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ME/CFS?/CFIDS Scandal UK
Wednesday, 5 May 2004
Jane Colby to the All Party Group of SMPs on ME/CFS
The Scottish Parliament

All Party Group of SMPs on ME/CFS

Speech : Jane Colby

Executive Director

The Young ME Sufferers Trust

March 2004

Twenty-two years ago I became a head teacher in Essex for the second time. I was young for a head teacher, pleased to be entrusted with a new school to open, my own staff to appoint. We set up a happy, thriving community of pupils, teachers and support staff. We specialised in dance, drama and the arts, we were well-known both for our stage performances and our design and technology. It was great. Wonderful. And like all new schools, we had ideals. We believed in hard work, happiness, fun, honesty. I had never heard of ME.

Within three years that was to change. A little virus in the polio family was the culprit - it totally altered my life and it is the reason I am here with you now. I still believe in hard work, happiness, fun - and honesty. There has been too little honesty in the world of ME. And today, I hope to put some of that right.

For example, we hear much of the new ME clinics that will be set up with the government's ?8.5 million. But there are great concerns about what these clinics will actually deliver.

Here in Edinburgh you have just had publicity for your own new clinic run by psychiatrist Michael Sharpe. There is huge concern in the ME world over the involvement of psychiatrists like Dr Sharpe, who may indeed appear sympathetic to the very real physical needs of patients. But we have heard much from psychiatrists of patients "illness beliefs". What do psychiatrists themselves believe?

In 1998, in a revised edition of their book "Chronic Fatigue and its Syndromes", Dr Sharpe and his colleagues Simon Wessely and Matthew Hotopf wrote: "Overall we believe that relevant psychological factors contributing to CFS in children [...] may involve a complex family dynamic of involvement, high expectation, limited communication on emotional issues, and previous experience of illness." The latest research in fact shows numerous physical abnormalities, particularly in the brain, which indicate viral damage.

It was because of psychiatrists' beliefs that the Royal Colleges' Report of 1996 vetoed home tuition for children with ME, which goes against both their legal right to suitable education and their human rights as sick children. And everyone else believed that all the Royal Colleges contributed equally to this report. A letter in my possession confirms that it was, in reality, the psychiatrists who led the way.

But to go back to how I came to be here. I still remember the moment when ME struck. The Housing Minister was coming to visit the school. As his car drew up I was waiting outside in the wind with strange pains in my back. "Bother," I thought, "I'm getting the flu." Over lunch with the Minister I realised that this was not the flu. It was far worse. My last memory at the end of the day was somehow driving myself to the doctor's surgery and saying: "I'm sorry, but I must see someone now. There's something terribly wrong." What followed is a blank.

My diagnosis came quickly. My recovery did not. At times I was bedridden, at times in a wheelchair. At times I forgot how to walk downstairs and simply fell. I lost a good deal of my vocabulary - which you would never know these days! I was in constant pain and my heart rhythm was affected.

After four years struggling to run the school despite all this, I finally decided to leave teaching to rebuild my health.

All I wanted was to recover. I certainly didn't intend to devote my life to my own illness - that was the last thing on my mind - it would have seemed too like navel-gazing. But not far away, two young girls who had also been suffering with ME started a small magazine for other youngsters like themselves, where they could make their voices heard and see their experiences and views in print. It was called The Young ME Sufferer - or TYMES, for short. It flourished, changed hands, developed an Advice Line and finally in 2000 became a national charity. And when the young co-ordinator and magazine editor who had achieved so much left, there I was again, this time entrusted with a new charity, my own staff to appoint - all volunteers.

So that is the history of The Young ME Sufferers Trust. But unlike running my school, running this charity has been a wake-up call. I have become aware of blatant injustice and discrimination against sick and disabled children, against the parents who care for them, and even against doctors who dare to defend them. And this is happening nationwide.

Who is doing this? Why are they doing it? Some of it is mere muddle and misunderstanding. Some of it is not.

Last year, The Young ME Sufferers Trust or Tymes Trust, as we are also known, published a report called "The Forgotten Children" and presented it, on ME Awareness Day, to No 10 Downing Street as part of a demonstration organised by Castleford Aid for ME, who support our Advice Line. This year we shall be there again. And I have to tell you that the injustices we listed in "The Forgotten Children" are still going on and some of them even appear to be increasing.

A good deal of this can be laid fair and square on the launch of the name "Chronic Fatigue Syndrome", and all who sail in her.

Prior to that, the illness was known to be neurological. It was called ME, or Myalgic Encephalomyelitis, and is listed by the World Health Organisation under ICD 10 G93.3 - a disease of the brain and central nervous system.

When the Royal College of Psychiatrists initiated the report I have already mentioned, they recommended that a recently invented name for research only - Chronic Fatigue Syndrome - with its woolly criteria, be adopted instead of ME. This was long before Tymes Trust was born. I had been asked by microbiologist Dr Betty Dowsett to produce Guidelines for Schools and was then asked onto the children's section of the National ME Task Force, which had produced its own report before that of the Royal Colleges. At a Task Force meeting I strongly advised the patient organisations to stand out against "Chronic Fatigue Syndrome". They did not.

What particularly worries us at Tymes Trust is that, ever since then, there has grown up a culture in the ME charity world itself of "Don't rock the boat".

This has actually now come to mean, "Don't tell the truth". Why not? Why are we in the ME world so scared of honesty? Tymes Trust believes that honesty must be the basis for our work with families and with professionals.

It might sound odd, even unlikely, to say that people in the ME world itself are afraid to tell the truth, until you start listing the examples. Which I firmly believe we now must do, despite the fact that it has been the tradition to close ranks and sweep such things under the carpet.

From its very first meeting, I was a member of the Chief Medical Officer's Working Group on CFS/ME. For some of that time I was working at Action for ME as their Children's Officer and I developed a questionnaire for the Panorama programme with reporter Matthew Hill. We discovered some extremely worrying statistics. You will all have heard of the many accusations against parents of children with ME - that they are harming their own children - Munchausen's Syndrome by Proxy, now called Factitious Induced Illness.

National Statistics show that this behaviour affects just one in 100,000 families. Yet Matthew Hill and I showed that 7 out of every 100 families surveyed, whose children had ME, had been subject to child protection proceedings and that 4 out of every hundred had actually been labelled Munchausen's Syndrome by Proxy. This was a national scandal.

As I prepared for my interview with Panorama I was told by Action for ME that I was not on any account to emphasise this, but I was, on the contrary, to announce that this phenomenon was extremely rare. I was aghast, and objected. This would be to deny the statistics themselves, which would be on-screen. It did not make sense. Nevertheless, a press officer was then assigned to me to ensure that I toed the party line, which put me, as an employee at that time, in an impossible position. My interview was not broadcast.

Since then we have had the publication of the Chief Medical Officer's Working Group by the Department of Health in 2002. Once again, during my three years on the Group, I saw the same fear, the same mechanism at work, to somehow placate the medical profession and suppress the truth.

I was, for example, taken aside by the first Chair of the Children's Group and asked to try and stop one of the parent representatives from putting difficult questions. He was, I was told, upsetting the doctors. I spoke with consultant paediatrician Dr Harvey Marcovitch about this, who assured me that he had no problem with this parent's questions. That was, after all, the role of the parent.

At another meeting, three psychiatrists were asked to make presentations. They were given substantial time each, taking the whole morning and over-running lunchtime. One was a member of the Children's Group. Yet I had previously been refused permission to make a presentation myself, concerning the educational needs of the children, which is my specialty, on the grounds that the only speakers allowed would be those from outside the Working Group.

The logic of choosing those with specialist knowledge to take part in the Group and then refusing to allow them to address it was never explained.

It so happened that two of the psychiatrists there had been involved with the production of the Royal Colleges' Report that severely discouraged home tuition for children with ME. Clearly my views would not be welcome. Later on in the process I was allowed to address the group, for approximately five minutes.

At the end of the three years deliberations, as we came up for publication, we suddenly received a last draft in which all the recommendations for distance learning and home tuition had been removed. Luckily I had already requested a final meeting between the Key Group and the Children's Group. We discussed the draft and I pointed out that Tymes Trust could not support the Report unless it improved the position for children with ME and at the moment this was not the case.

Action for ME immediately dissociated itself from my statement and made it clear that they did not support my stand. Why? What did they fear? In fact, it was the doctors who came to the rescue. Dr Nigel Speight and the late, great Dr Alan Franklin backed me up, the educational recommendations were re-introduced. Shortly after this, the psychiatrists resigned.

We at Tymes Trust are at a loss to see what possible advantage can be gained by refusing to face the reality of the dire things that are still happening to adult patients and to children.

In the last two months, apart from our usual calls for advice, we have heard from a young woman who was suicidal after no support was being offered to help her look after herself; a family who was being threatened with having their child made a Ward of Court; a father whose wife and child had fled abroad to avoid social services taking out proceedings against them - the child is, incidentally, much better now, out of all the stress and worry caused; a family whose child had been placed on the At Risk Register because they would not send her to school while she was ill.

In addition to this, on 29 December, when all the ME charity offices are closed, I received a desperate email from a mother who had just found our website. She needed information about what she could do to prevent child protection proceedings from being taken against her, since a case conference had been called for Monday 6 January, the first day that offices are open again in the New Year.

All hands went to the pump, duty lawyers were consulted, she was given advice on the law by email and sent documents urgently by post, which together resulted in a stay of execution while the medical diagnosis was confirmed.

Yet, despite the fact that these cases appear still to grow in number, the reality is denied by the very ME organisations who should be protecting the children and publicising what is going on. We find this extraordinary.

Perhaps one of the worst shocks for me came when the BBC journalist with whom I was working to get a large feature about this problem into The Observer magazine came on the phone to me and said that the Association for Youth with ME was very angry with her and had tried to stop her writing the piece.

They had, she said, refused to help, or to give a family the opportunity to talk about their own experiences if they wished. As a young reporter with ME herself, she found this incomprehensible and at first had even been inclined to disbelieve that these cases were, in fact, still going on, because she had been told that things were much improved. She soon found that they were not.

In our own work with doctors and teachers we do not find the need to hide unpalatable realities. We discuss them openly. And it is our fervent belief that only through the truth will we finally achieve a breakthrough in care. Most doctors and teachers with whom we work wish to do their very best for their patients. They do not need protecting from the fact that others in their own professions are letting them down. They themselves do not wish this situation to continue as it gives their professions a bad name with ME patients.

To return now, to the views of psychiatrists. What happens when they are faced by the reality of these cases when reported in the press? What happens when they read of extremely severe child cases, and when they themselves are faced by extremely severe child cases, and by the increase in their numbers? Are their beliefs altered?

Once again, I shall quote from "Chronic Fatigue and its Syndromes". "We think that this is the consequence, and not the cause, of the increasingly fevered atmosphere of the publicity in this area."

This is emotive language indeed. "Increasingly fevered?" I am amazed that families and press alike remain so sane in the face of a nationwide witch-hunt against the parents of sick children and against the children themselves. How is it that children all over the country, who do not know each other, nor read adult newspapers nor, on the whole, watch the news with much avidity, decide to copy the same, severe symptoms as others many miles away, symptoms that mean they will be confined to bed, scarcely able to move for weeks on end, possibly having to have a tube inserted into their stomach in order to be fed. How can anyone believe such nonsense?

It is not by sweeping such things under the carpet that we shall eventually prevent them happening. It is by bringing them into the light and by asking everyone in a position of political power to consider whether the medical profession should any longer be allowed to police itself when such abuses are going on.

There is a genuine feeling, I believe, amongst ME charities that only by working with those who put forward the views we have heard can we change those views. That is a valid argument.

But there is also the opposite argument - that merely by working with these people, we convince ourselves that we are getting somewhere. This does not follow. A union leader in Ireland has commented that working in a "partnership" between employers and unions gave the leaders a feeling that they too were running the state, but, he said, when it came to dealing with the government "they bang the table with a sponge".

We belong to the ME Alliance of charities and we would like to see it being more effective. We would like very much to be able to work with charities that uphold the truth about this terrible illness. We would like to encourage them not to fear the truth.

Many of the research studies we read about, study CFS, with its wide criteria. The Fulcher and White study that is so widely quoted actually excluded everyone with sleep disturbance - a classic symptom of ME. The new research being set up via the Medical Research Council into treatments for ME are again using wide criteria and are yet more studies into ways of managing the illness via psychological means. They can never cure the illness, nor throw light on its cause, and many patients are incensed that yet more money has gone into this kind of research by the same psychiatrists who have put forward the views quoted, and that their own patient groups are joining in, and lending them validity.

Earlier this week a mother telephoned us, distraught because she had discovered that one of the new clinics being set up in her area, supposedly for children, was to be run along psychiatric lines by someone who had made things very difficult for her own family. She had apparently read the announcement via a patient organisation and wanted assurance that Tymes Trust was not involved as well - "or else", she said, "I shall have no-one left to turn to". This is the reality of the parent's view.

An observation by Earl Howe in the recent House of Lords debate, reported in Hansard, perhaps describes the problem of ME best. Commenting on the Countess of Mar's speech, Earl Howe said: "In trying to summarise her concerns, I hope that it is not too colourful to say that we are looking at a doctors' battleground."

And this has been the real truth all along. The battle has not been about patients against doctors, it has been about doctor versus doctor.

This is also still going on, with those who are prepared to defend a child's right to be looked after at home and with suitable education also provided for them in their home being attacked and even reported for malpractice by their own colleagues. I heard of just such a case only yesterday.

From all that I have said, you might be forgiven for thinking that I have no time at all for psychiatrists. That is not the case. I was once in hospital during a bad bout of my ME and was asked to see a psychiatrist. I agreed. He was charming, sensitive, helpful, and talking to him helped me decide how to proceed when I left hospital. But he did not intervene, or try to manage my case, or tell me that he could make my ME better. He left that to my own good sense, and to my body and its self-healing properties.

I run many courses for teachers. I am often asked by Local Education Authorities to train their teachers in the needs of children with ME. But mostly, I am asked by those who run the home tuition and re-integration services. The teachers who work in schools are often in greatest need of information because - and perhaps I should have said this before - educational demands are a key cause of relapse in children. This is confirmed by paediatricians.

It is because of the extreme fragility of the child's brain and body, and no amount of willing it away will make it go away. As the Irishman said to the traveller asking the way (and I tell this joke as someone who is half-Irish myself!) "If I were you, I wouldn't start from here." Well, as I am always saying, we have to start from here.

There is nowhere else to start from.

March 2004

This speech has been distributed to all Members of the Scottish Parliament by Alex Fergusson, Convenor of the Cross Party Group of MSPs.. It was delivered in person by Jane Colby at the meeting of the Cross Party Group on 24 March 2004.

ME International

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Sunday, 11 April 2004
What is MEA hidding

Statement of concern by a member of the MEA to other members of the MEA and to the ME community regarding the MEA
From Ciaran Farrell

The MEA have issued a statement that is a blanket denial of the charge that the MEA is insolvent. The previous Board of Trustees issued a series of blanket denials and then in March last year they issued an urgent appeal for funds so that the MEA would remain viable in the medium term. The target for this appeal was #150,000, which would secure the viability of the MEA in the short to medium term. Only approx #67, 000 was raised. The MEA promised that if the appeal was unsuccessful it would return the money to the individual donors on the basis that the MEA was not viable. All the individual donors
were asked to sign a release so that the MEA could spend the money that had hitherto been held in trust by the MEA.

This presupposed the MEA to be viable, but the issue of insolvency and the short to medium term viability of the MEA had not in fact been addressed, nor has it been. There have been denials of the seriousness of the financial and organisational problems faced by the MEA by the previous Board and by the current one who are carrying on with the self same polices of refusing to discuss these matters, and to all intents and purposes to act as if there were no problem worthy of discussion.

This was despite the fact that a large number of statements concerning the financial and organisational health and fitness of the MEA in general and the Research Fund in particular had been made by a select group of individuals one of whom became a candidate for the Board of Trustees.

Such views and attitudes fly in the face of the events of recent history and the continuing question mark placed over the viability of the MEA by the emergency appeal and the reason for it in the first place, and it's lack of success. Yet the MEA have not engaged in any other major fund raising venture to reach the target that they set themselves to secure the future of the MEA. Nor has any white knight or benefactor come forward to save the MEA from its fate, and there has been no lucrative government grant to help out either.

In a statement in ME essential magazine Ann Campbell put the financial and organisational problems faced by the MEA in a nutshell by saying that it cost #40 per member to provide the services that the MEA offers to it's membership, whilst the MEA only received #15 from each member by way of membership subscription. Clearly if this state of affairs is broadly correct there has to be a pretty severe problem, if not why had the MEA's auditors asked the MEA to launch the emergency appeal?

Another factor that was completely apparent from this at the time was that is was not simply a question of an extra few quid to bail out the MEA so it could have some kind of future, there needed to be a radical overhaul of the entire MEA, root and branch, and a complete reorganisation of what the MEA does, and how it does it.

At the MEA AGM on December the 6th the then chairperson Ann Campbell stated no less than 7 times that it would be up to the new Board to decide if they should decide to wind up the MEA as they would be provided with extra financial and other information at the Board meeting following immediately after the AGM. The members of the new Board contend that no such information was forthcoming, and that no such decisions were arrived at, because they were not even discussed. The contention is that the meeting was taken up with routine financial and administrative matters.

Ann Campbell did not want, and tried very hard to prevent any form of discussion of the MEA's financial position and did not address the matter of the solvency or the viability of the MEA, she would not be drawn on the matter, as she said that it was for the new Board to decide such matters.

Thus members legitimate questions concerning the solvency and viability of the MEA went unanswered.

This has cast a long shadow over the viability of the MEA, which has grown ever longer from that day to this is due to the following :-

The argument between the MEA's auditors concerning the qualification of the last set of accounts. The MEA considered that the auditors were not to exercise their professional judgement on the matter of the viability of the MEA and took advice from a specialist insolvency practitioner concerning the exact definition of insolvency. This led to the curiously worded disclaimer in the full set of accounts that the MEA did not want members of the MEA to obtain either at all, or in time for the AGM. It is part and parcel of the audit that the question of viability is considered by the auditors, and it is enshrined in company and charity law that this must be addressed in the audit report. The MEA were not acting within the framework of the law when they tried to prevail upon the auditors to withdraw their recommendation on non-viability. I was sent certain material about this issue by the Charity Commission last year in response to my enquiries.

The MEA have completely failed to comprehend the financial fact that the disposal of their large fixed asset, the freehold property would have, and has had a very significant impact on their ability to implement their Strategic Plan which was drawn up in 2000 and to which the previous Board and CEO were over committed to the detriment of the financial and organisational health of the MEA. They pushed on regardless with their plans without due care for financial and organisation planning in the implementation of their master plan their strategic plan. They forgot a golden rule about such matters that is that any given plan can only be implemented as far as resources will adequately permit.

One of the many consequences of this is that the MEA changed from being an asset rich and cash poor organisation into an asset impoverished and cash strapped one. This has a profound implication for the way in which the balance sheet test for solvency / insolvency works. In theory if one has money tied up in a large fixed asset one can trade on the basis that if the worst should happen and the organisation becomes insolvent on a day to day basis due to the lack of sufficient day to day revenue income to meet expenditure, then the company has to be wound up. The company can 'fail safe' that is, creditors can be paid the money they are owed from the sale of the fixed asset. This might also pay some of the winding up costs, or so it could be argued. Thus it would be possible to obtain a bridging loan from the company's bank on this basis, which could be repaid, later from the sale of the freehold property. This means that only a small mergency contingency fund need be held as a safeguard against insolvency and the costs associated with winding up and closing down the MEA.

Thus the mere presence of the freehold property was in effect by default a buffer against having to meet the entire costs of winding up the MEA from the MEA's day to day revenue resources which would be insufficient to meet day to day expenditure let alone the additional costs of winding up the MEA and staff redundancies etc.

Thus the implicit and unacknowledged costs of winding up and closing down the MEA become explicit as monies to the value of these costs have to be
held against the possibility of insolvency in a very, very much larger contingency fund, which in any event did not really exist in actuality, hence the problem. This situation was made a great deal worse because the cost of the office move, new office equipment and a larger more highly paid workforce recruited to professional posts and paid on professional salary scales soon ate up all the profit from the sale of the freehold premises, and more besides. Some of these costs were one offs, so although paying for them left a "hole" in the accounts, this hole could be filled in from day to day income providing that source of revenue did not continue to drop as it had been forecast it would, and it did. The MEA took on even more staff, and this time the expenditure is year on year, increasing the base budget of the MEA above levels that were sustainable. This led to staff being laid off, some of whom continued to work as volunteers.

In order to fill the staffing gap the staff from the Scottish Office who were being paid for by a grant from the Scottish Executive were in effect redeployed south to Buckingham and the Scottish Office was run as an outreach from Buckingham. This led to conflict between the MEA and the Scottish Executive and the grant was terminated, although the MEA tried to salvage matters through negotiations about some alternative form of provision.

The old Board met and decided to make the post of CEO redundant. More staff left or were made redundant due to concerns about the viability of the MEA, and another member of staff left just before Christmas. These redundancies, especially that of the CEO have been very costly, and yet again there is another hole in the accounts that has to be filled in from day to day revenue income which is again continuing to fall both for underlying reasons, and for another reason. The MEA relies very heavily on membership subscriptions and the donations members make when they pay their subscriptions, and the donations from the families and friends of members. Because requests for membership renewals are not being sent out and processed promptly the cash flow of the MEA has fallen. This relates to the problems with the various computer systems, and to the problems the very small staff have in operating the systems concerned. They have in addition many other tasks that had previously been done by their colleagues who are no longer working for the MEA.

This raises two fundamental questions, firstly can those staff that are left actually hold the line and keep the MEA afloat on a basic organisational level so that there may be an opportunity to rebuild the MEA from the ruins of what it was as an organisation?

The second question now arises, which is given the strategic plan lies in ruins and there are now only 2 staff when there had been eight, how can the MEA reorganise itself to meet the changed circumstances in which it finds itself?

A third question arises from these two, which is if this opportunity to rebuild and reorganise is to be taken up, then it must be taken up quickly before the MEA dwindles down to being non viable nothingness in financial, organisational and staffing terms.

If the MEA and it's Board of Trustees does not come up with a cogent and meaningful new strategic plan to serve as a rescue package for the MEA, then the MEA will dwindle down to nothing, and cease to exist.

This is why the new Board have to act quickly, decisively and comprehensively to draw up a rescue plan that members, staff and potential funders can sign up to and have confidence in.

It was clear to the MEA a year previously that they were sailing into financial trouble with the medium term viability of the MEA as is clearly shown in the previous year's accounts and Directors Report. In these documents the MEA Treasurer specifically made mention of this danger and warned against the MEA being too complacent about this matter. One has to
ask why the MEA did not heed it's own warning from it's own Treasurer?

Prominence was given in that report to a fundraising drive that would bridge the growing budget gap, and thus solve the anticipated future problems. There is no evidence that any significant or meaningful fundraising drive actually occurred in reality, why was this?

That 2 part time accountants left the MEA in March last year and this and other staffing issues meant that there were problems with the accounts being kept and with the computerised membership and accounting packages being updated. There were very severe problems reported in these areas in the Full Directors Report that the MEA tried not to make available to members either at all, or for the AGM. These issues themselves have histories and go back several years.

That a year previously another member of staff had walked out, and this person was gravely concerned about the general and financial management of the MEA was being conducted. This individual had introduced the various new computerised systems into the MEA following the mess left by the MEA when it divested itself of its local groups. The problem was that there was a single general purpose bank account which could be used by the local groups and the central MEA, so nobody knew what was what, as no proper or adequate records were kept of financial transactions.

The main issue was that if most of the money were ascribed to the central MEA which laid claim to it, then this would render the local braches non viable and bankrupt them. If on the other hand most of the money was ascribed to the local branches as they wanted, the central MEA would not be viable and would probably be rendered insolvent. In the end the local branches were able get the better end of the bargain struck between them and the central MEA.

The real casualty of the name change and the adoption of a completely new Mem and Arts back in 2001 was the central MEA. This was because it had decided that it did not want to have any branches, and would not be a resource for the local branch network it had been supporting, but it had not decided what it actually wanted to be, or do. The MEA drew up a new Strategic Plan that was not shared with the membership, and the membership were not consulted on it. This was because the relationships between the branches and the central MEA had become a conflict zone. The MEA decided that it was not going to be the servant of the membership again and began constructing a "Berlin Wall" between them and the local groups. The MEA decided that it wanted to get away from the culture of being a member run and led organisation and that it would become a professional organisation who would employ professional who would concentrate on a narrower range of services that the MEA would provide which would principally be turning the MEA into a research and educational charity. The things that the membership considered to be important like advocacy, benefits advice and other practicable help to ME sufferers were to be divested from the MEA portfolio just as the local groups had been. The MEA staff were to be made up from professionals who unlike volunteers would not be able to attend various internal meetings and engage in ME politics, such activities would now be off limits for staff.

A new Chief Executive was brought in, and she helped draw up a new Strategic Plan to enable this vision of things to be turned into reality. The Board decided that it would delegate a very considerable amount of power to the CEO who would have absolute control over all matters involving and relating to the implementation of the Strategic Plan. This was a mistake as the MEA Board had decided to take the "change or die" view of the implementation of their Strategic Plan as all of the MEA's activities and resources were bent into achieving the objects continued in the plan. This focussed more and more power in the hands of the CEO, and in the end Board members were forced to take a back seat.

For a period of time apparently the books of the MEA were not actually being kept, until a firm of accountants were brought in to perform this function. The MEA's auditors qualified the MEA's accounts on several occasions due to the local groups problem. Even after the split the MEA could not rely on being able to call upon the large balances that were being held in their bank account, as these were the subject of protracted negotiations with the local branches. Thus it was hard to obtain external funds from funders such as the lottery, or various government agencies etc. Another problem was that the MEA had decided what it was not, but not what it wanted to be, only that it wanted to be a professional outfit comprised of professionals.

There was not the in house expertise to conduct the required financial and organisational planning in order to rearrange and reorganise the current staff into an establishment that was fit for the rather ill defined new purpose in life. No such expertise was sought externally for this purpose. This resulted in the lack of a coherent organisational structure with properly defined posts of responsibility defined by a job specification and a person specification. It was not so much a question of square pegs in round holes it was a question of amorphous pegs in amorphous holes.

Thus the MEA lost it's way and forgot what it was here for, because it was determined to walk away from being a support organisation run by volunteers for it's members, and defined itself by what it was not, and not what it wanted to be.

This led to the problem that the MEA did not realise that it was not delivering the services it had chosen to provide either efficiently or effectively, and certainly not cost effectively. The very costly exercise of replacing volunteers with highly paid professional was a financial and organisational disaster. The MEA had made the mistake of thinking that just because volunteers are not paid and may not have the qualifications that might be expected of a professional in the role that their volunteer staff were of poor quality and low calibre. The skills and knowledge the volunteers had gained over many years proved to be invaluable in providing the service that members actually wanted from the MEA.

The other thing that was not appreciated by the MEA was that if one wants a highly trained and highly salaried professional staff, then they must be paid for, but one can only afford the staff one pay for. Had the MEA actually done the basic work around just how many people they really needed to run the core activities of the MEA plus some project work and development work, instead of simply building up as large a body of professional staff as possible, it would not have gone so badly wrong.

Financially speaking the MEA were way over establishment because the base budget of the MEA could not support the salaries of its workforce. Now most of those staff are gone, and some of them have been replaced by volunteers, we have the same problem but in the worse situation of those who are left having to become ever growing omnipotent amorphous pegs which must fit into many amorphous holes simultaneously in order to run the MEA in the short term.

Given the problems with the computer systems and the lack of financia expertise it is very doubtful that the computer with the accounts package has been regularly updated with all the relevant financial information, bills, involves, membership etc. Even if it were what is on that computer is only about half the story as the accounts package cannot produce a full set of management accounts, let alone the SORP accounts required by the Charity Commission.

That the MEA completely failed to understand the split of responsibility between either their own in house bookkeepers, and the firm of auditors engaged in the auditing of the MEA's accounts. That is, the same company cannot legally perform both tasks because of the contradictory roles and responsibilities. This continues to be the case, as far as I know or understand matters within the MEA.

There is the question of if the MEA actually has appointed any auditors and if so they will need to audit a set of accounts that the MEA will need to produce for this purpose. The audit process can take 2 1/2 to 3 months and can be quite costly. Has the MEA actually made proper preparation for these factors in terms of its proposed AGM date for this year?

That as many people will remember 3 Trustees including the Company Secretary resigned in protest at the general and financial mismanagement of the MEA which sparked an internet campaign for a new era of openness and transparency at the MEA. One of them was the Company Secretary. This position of responsibility was taken over by the then CEO against protocol, custom and practice and legal requirements that involve consulting the Charity Commission about the matter. The Directors report that was sent into the Charity Commission by the MEA, and forwarded to Companies house has to be signed by a director of the company who is a trustee. The report was signed by the then CEO who was not a Trustee or a director of the MEA, and is dated the 19th of September 2003. One has to ask how valid the contents are given that it was not signed by a person who possessed the relevant authority to do so. This matter is one of the reasons why the Company Secretaryship should not pass directly from the hands of a Trustee on the Board to the hands of an employee of the Board.

That the last set of accounts that are existence are the ones lodged with the Charity Commission and Companies House. These were prepared by the MEA's auditors for a period to December 2002 from December 2001, since they needed to be lodged with these bodies within a specified timescale the financial accounting information contained within the accounts was extrapolated to cover a period several months beyond the period of accounts actually examined by the auditors. This is in contravention of custom and legal practices.

A financial analysis of the MEA's solvency has been conducted by a professionally qualified member of the MEA community based on these figures, and that analysis shows that the MEA is not solvent.

It is extremely doubtful any other set of accounts have been produced since then, so then how can the MEA actually know if it be solvent or not?

What value should we place on the denials of the current Board that the MEA is not insolvent?

Given that it is the legal duty and responsibility of the Trustees of the Board and the Board as a whole to insure that they are not insolvent, it is unlikely given the current situation that they actually know, and can prove that their denials are indeed worthy of serious consideration?

That there is no evidence based on the information held by the Charities Commission that the MEA went through the correct and proper procedures within the MEA Mem & Arts to obtain the necessary consents and permissions required to dispose of the freehold property the MEA owned, and how the funds locked up in the property were then released for revenue spending. There may also be an issue surrounding the switching of restricted income streams connected with this. There is no evidence that the MEA followed the various procedures for this as set out in the Charity Commission booklet,"Disposing of Charity Land" CC 28, as a number of matters would have needed to be reported to the Charity Commission for their approval, and in any event should have quite rightly, and legally been reported in the Directors Report for that year. No such evidence exists as there is nothing on file with the Charity Commission to this effect, and there is no such entry in the Directors Report and the proper referenced entries are not made in the accounts.


That the MEA does not, and as far as I can tell has not properly or systematically made use of properly drawn up quarterly or monthly management accounts to provide financial monitoring information and routine financial controls as would be necessary and prudent in any form of business including a charity. This means that prior to the period when the move to new premises was being mooted and implemented that proper financial controls, management accounts and financial planning never really took place as the MEA were trying to pick up the financial and organisational pieces after the local groups debacle in which the MEA divested itself of it's local groups.
Producing these accounts and discussing them at Board meetings is recommended by the Charity Commission in their booklet, "Internal Financial Controls for Charities" CC 8.

This financial information not only can be used to monitor expenditure, it can be used as a tool to identify areas of the organisation's work that are not performing according to expectation because financial activity mirrors organisational activity. More important still, these accounts can provide the basis for sound financial planning for both organisational growth in terms of projects to be undertaken, and grants applied for, it can become a backstop to plan cuts if need be. One has to ask on what basis would grants from government or other funding bodies be sought when the ability to put together the sound financially costed proposals that funders require is absent?

Another question arising from this is, even if or where such grants wereapplied for and obtained how can the MEA provide a proper management and financial account for the money granted to the MEA for a given project or piece of work which these days is an absolute requirement of such grant / contract funding?

Yet another question follows on the heels of the last one, given the above, how can the MEA research prospective services for it's membership, consult on them with the membership and where approval is given obtain the necessary funding from the various funding bodies, and then implement the required decisions and turn them into services for MEA members?

The absence of this sort of financial and organisational skills and knowledge base, and the lack of the organisation culture that goes with it raises a number of deeply disturbing issues :-
A] The operation of the ME Connect support system that is financially supported by a grant, and how this is funded and how the grant is accounted for, and what the lines of accountability are for the service, and how the service meets or fails to meet it's operational policy, assuming there is one?

B] The lack of clarity and muddled thinking surrounding the MEA Research Fund's operation in financial, organisational planning an reporting terms. Who decided what research to fund, and on the basis of what kind of policy, and who draws up the brief for a research project? Who decided who is awarded funds and on what basis, and when the research is complete what kind of report do the MEA get in return for their money? Who decided if the research has been a success against the brief originally given? It is clear from reading the new ME Essential magazine and before it the Medical and Scientific Bulletin that there is no direct reporting of the results of MEA sponsored research specifically as such in contravention of the MEA's Mem & Arts.

There has been a culture of a number of prominent ME scientists or clinicians who have received funding from the research fund whilst they have some sort of involvement with the decision-making and advisory processes of the operation of the MEA research fund. There was also an involvement of the Melvin Ramsey Society, or a number of it's members or past prominent members in these matters which should be properly crystallised in organisational terms and regulated through proper procedures put in place by the MEA Board together with proper separation of the client and contactor functions to enable financial and organisational probity and clear and unambiguous reporting lines so as to avoid or minimise conflicts of interest, as set out in the Charity Commission booklet, "Charities and Contracts" CC 37 and "Charities and Trading" CC 35.

Full, proper and meaningful accounts of the Research Fund have still not been produced which tie the projects funded to the actual spending that occurred have yet to be produced.

C] There is the lack of clarity concerning the trading subsidiary of the MEA. It is quite right and proper that a charity company can engage in trading in order to generate funds for it's main charitable activities.
However, the way in which the stock and stock taking and stock levels are managed are causes for concern, together with the way in which staff time is ascribed to the activity of trading. There does not appear to be the sound practice in place as required by the Charity Commission as set out in their booklet "Charities and trading" CC 35. There is also an issue concerning what assets are the preserve of the Trading Subsidiary and what are the preserve of the MEA that owns the subsidiary.

The above are some of the issues that I can identify that the new Board should have been getting their teeth into. These are just a few of the reasons why I feel as I do about the MEA and the events of the last year or so, and the period from the AGM to the present in particular.

It is a lot to take in, and a lot to think about. I ask that the members of the Board of trustees consider this statement carefully at their next Board meeting and decide how they are going to address the issues I have outlined, before they decide to paste up any more dismissive cliches on their website.
I would also like them to consider the old saying that the first step in solving a problem is to acknowledge that there is a problem there to be solved.


Once this step has been taken, then as John Lennon said, "there are no problems only solutions".


Ciaran Farrell
_____________________________________________________
ME International

Posted by peter200015 at 2:32 PM EADT
Updated: Sunday, 11 April 2004 2:33 PM EADT
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Sunday, 4 April 2004
Myalgic Encephalomyelitis
http://news.scotsman.com/uk.cfm?id=366892004


Children with ME 'wrongly taken into care'

TANYA THOMPSON HOME AFFAIRS CORRESPONDENT


YOUNGSTERS suffering from ME are being taken into care and their parents accused of child abuse because doctors are wrongly diagnosing their condition, experts have warned.

Leading figures in the field of ME, also known as chronic fatigue syndrome,claim that dozens of parents are facing court action for harming their children because of a failure by doctors to accept a physical diagnosis for the illness.

Jane Colby, the head of a national charity on the illness, said a number of doctors insisted patients are suffering from a psychiatric disorder.

Ms Colby said: "Many of these children are being treated like their parents are harming them. Children are being taken into care and parents are being threatened with child- protection issues.

"The scandal is that these things are being swept under the carpet by ME organisations that don't want to rock the boat."

ME, or myalgic encephalo-myelitis, affects about 15,000 people in Scotland and is characterised by extreme disabling fatigue made worse by physical or mental exertion. Critics say sufferers are often dismissed as hypochondriacs, with some doctors refusing to accept that ME, exists.

With no cause established for the illness and no effective treatment available, many sufferers are referred to psychiatrists for therapy.

Many parents whose children suffer from ME are accused of having Munchausen's syndrome by proxy, a largely discredited theory where parents fabricate illness in their children to draw attention to themselves.

Ms Colby, who is the co-author of a major report on the illness, claims that seven out of every 100 families surveyed whose children had ME had been subject to child-protection proceedings, and that four out of every hundred had actually been labelled as having Munchausen's syndrome by proxy. As many as 5,000 children in England and Wales are said to have been taken into local authority care over the past 15 years on the strength of this diagnosis.

Ms Colby, the executive director of the Young ME Sufferers Trust, said doctors are breaching guidelines set down by the chief medical officer which stress that the illness is a neurological rather than psychiatric condition.

She alleges that a number of organisations, including Action for ME, pressurised her into playing down the statistics.

She added: "Psychiatrists seem to have a monopoly on the whole thing. The children are seen as suffering from psychiatric illness. A lot of psychiatrists believe ME is a cultural phenomenon. They do not believe that it is a medical condition."

Last night, Alex Fergusson, the convener of the Scottish parliament's cross-party working group on ME, said he is aware of cases in Edinburgh where children were taken into care in relation to ME.

He said: "I know of two cases where the parents were accused and the children were the subject of child-protection cases.

"They were forcibly removed from their homes and the mothers left traumatised."

GPs are being advised on the best treatments for the estimated 240,000 ME patients, as growing numbers of young people become affected with the illness once dismissed as "yuppie flu".

The latest research suggests that viral infections may be to blame. However, it is feared that ME clinics continue to concentrate on the so-called psychiatric features of the illness.

Last night a spokeswoman for the charity Action for ME claimed parents had been wrongly accused of abuse.

She said: "There were some horrific cases where children were misdiagnosed.

"We do not support the view that it is a psychological illness."

Ms Colby, who recently gave a speech to the parliament's cross-party group on ME, will contact every MSP this week to highlight her concerns.

ME International

Posted by peter200015 at 2:20 PM EADT
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Tuesday, 30 March 2004
Myalgic Encephalomyelitis Pace trials (what use?)
Peter White and Simon Wessely are the psychiatrists running the PACE trial. Wessely's name is on the PACE protocols document sitting on my desk. Wessely is in fact directing it. No doubt and no debate.

I give you verbatim:
PACE TRIAL IDENTIFIER ---------------------
"4.1 What are the arrangements for day to day management of the trial? The trial will be run by the trial co-ordinator who will be based at Barts and the London, with the principal investigator (PI), and alongside two of the six clinical centres. He/she will liaise regularly with staff at the Clinical Trials Unit (CTU) who themselves will be primarily responsible for randomisation and database design and management (overseen by the centre statistician Dr Tony Johnson), directed by Professor Simon Wessely, in collaboration with Professor Janet Darbyshire at the MRC CTU."
Jane London UK

-------------------------------------------------------

Alison Hunter Memorial Foundation

Re UK Medical Research Council funded PACE Trials White, Sharpe, Chalder et al

The American Association for Chronic Fatigue Syndrome Newletter August 2003 (Workshop summary by Editor Daniel Clauw, MD, from notes by Eleanor Hanna) Scientific Workshop,sponsored by the NIH Office of Research on Women's Health June 12-13 2003, Bethesda, Maryland

Presentation of Peter White,MD CNS and ANS Responses to Exercise in Patients with CFS Excerpt:

" He( Dr White) focused on the fact that CFS patients view exercise as being more exhausting than controls, and that this could be evidence fora more widespread abnormality in enteroception in CFS. Re: appropriate models, Dr White explained that the cognitive behavioural model of CFS posits that the symptoms and disability of CFS are perpetuated predominantly by dysfunctional illness beliefs and avoidant coping. Beliefs associated with a poor outcome in CFS include that exercise is dangerous or damaging, that the cause of CFS is a virus, and that CFS is a physical illness."

The UK multi centre studies of PACE by using broadly defined patient cohorts will have serious and long-term implications worldwide for the management of people with ME/CFS.

What precise measures will be used to assess benefit from these trials? For instance ? improved swallowing, less abdominal pain and distension, less vomiting, improved gastric emptying, reduced diarrhoea, weight gain, able to cease nasogastric tube feeding, or headache eased, rolling over in bed unaided etc.

Will such patients be classified as somatoform disorder and therefore excluded? Will the beliefs of the researchers be strongly associated with / reliably predict the trial outcomes?
"Truth is the child of time, not of authority" - Bertold Brecht, Life of Gallileo

Christine Hunter
chunter@ahmf.inspired.net.au
Alison Hunter Memorial Foundation

Posted by peter200015 at 2:03 PM EAST
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Monday, 15 March 2004
ME/CFIDS/CFS/FM more UK


THIS IS A STATEMENT OF PUBLIC INTEREST

>
Conflict of Interest : Dr Charles Shepherd, Trustee of the UK ME Association


A Conflict of Interest is defined as: "a situation when someone, such as a lawyer or public official, has competing professional or personal obligations or personal or financial interests that would make it difficult to fulfil his duties fairly."

I am in regular contact by various means with many members of the ME/CFS community all over the world. We have increasing concerns over the Conflict of Interest that has arisen as a result of the renaming of the UK ME Association to the "Myalgic Encephalopathy Association".

Like several other associations worldwide, the ME Association now goes under the name of an illness that has no World Health Organisation category. This presents dangers not only for the ME Association but possibly for other ME/CFS organisations in the US and elsewhere, in that any illness with no official categorisation is open to abuse, and/or to inappropriate and damaging treatment.

As used by the World Health Organisation, the term ME is listed in full (along with Chronic Fatigue Syndrome) as "Myalgic Encephalomyelitis" under category ICD 10 G93.3 - a neurological categorisation. The term "Myalgic Encephalopathy" is not recognised by the WHO and therefore has no categorisation.

Herewith arises the Conflict of Interest which so concerns us in the UK.

This suggested term for the illness is being actively and publicly promoted by Dr Charles Shepherd of the UK ME Association. Dr Shepherd is not an ME/CFS specialist, he is a general practioner. He lists various scientific justifications for the position he has adopted. However, internationally respected ME/CFS experts such as Dr Byron Hyde and Dr Elizabeth Dowsett disagree strongly with him, also with scientific justification. The Canadian Criteria consensus panel disagree also.

Since there is potential danger in jumping the gun and pre-emptively adopting a term that has no categorisation by the World Health Organisation (and which could if adopted by the WHO be categorised under F14 - mental illness) why should there be such a drive to promote it in a propaganda blitz such as is happening now in the UK?

The entry on the UK Charities Commission Register of Charities officially lists the ME Association's new name as THE MYALGIC ENCEPHALOPATHY ASSOCIATION. Their Objects as registered with the Commission also contain it.

Therefore the MEA no longer conforms either to the World Health Organisation's listing of the illness, or even to that of the UK Government. Our Health Minister Lord Warner recently and unequivocally referred to the illness by its WHO term: "Myalgic Encephalomyelitis".

One must now seriously question whether the main motivation behind Dr Shepherd's increasingly anxious promotion of the new term is this: If the MEA is to have any credibility at all after its ruthless attempt to single-handedly force this new term into public use, Dr Shepherd has to win the argument.

Such a Conflict of Interest throws doubt on a Witness Statement in any court of law. When Dr Shepherd gives medical reasons for his promotion of a new term for ME/CFS, he ignores other medical information supplied by ME/CFS experts Dr Byron Hyde and Dr Elizabeth Dowsett and also the information in the Canadian Criteria in the Journal of Chronic Fatigue Syndrome. This fact in itself should alert us to the presence of the Conflict of Interest.

To summarise:

Under Dr Shepherd's medical leadership, the name of the MEA itself was changed FROM the designation of the illness used by the WHO to one of Dr Shepherd's own personal choosing. The MEA members voted for it, since they trusted Dr Shepherd.

The ME Association is now in a quandary. It has no option but to promote this new term for the illness.

It is locked into promoting a term not used by the World Health Organisation or the UK Government and which, therefore, carries serious dangers for ME/CFS patients if it should ever be adopted. Categorisation could be influenced by the psychiatric lobby who so recently tried to get away with listing ME/CFS as a mental illness and has had to back down.

Dr Shepherd is actively trying to get the MEA's new term for the illness into use by our Department of Health and by the medical establishment. Are we to think that these factors are completely unrelated and that he, as an MEA Trustee, is not influenced by the MEA's need to justify its name?

IMPLICATIONS

In political circles, if such a Conflict of Interest arises, it has to be publicly declared in any debate, so that any hidden influences are revealed. If a Conflict of Interest arises amongst the Trustees of a Charity, the Trustee concerned has to withdraw from any debate concerning that issue.

Should Dr Shepherd now withdraw from any public discussion of this matter? Despite publicly announcing the new name of the MEA, he has, to our knowledge, never declared openly this obvious Conflict of Interest. In such a situation, how can we accept his medical arguments as being without bias?
The ME/CFS community needs to seriously consider this matter. This debate is NOT about what might or might not be a good term for the illness in the future. It is a debate over an official categorisation that protects patients and about the integrity of the information we are being fed.


Jane Bryant

The One Click Group


ME International

Posted by peter200015 at 6:07 PM EAST
Updated: Monday, 15 March 2004 6:39 PM EAST
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Monday, 8 March 2004
ME/CFS more UK
For many weeks, Dr. Shepherd has refused to answer questions posed to him by both members of the MEA and by the wider ME/CFS community. Dr. Shepherd has campaigned on the internet for change within the MEA; that full and frank dialogue must take place. Unfortunately, this has not been forthcoming to date. For many years Dr. Shepherd was Medical Director/Adviser for the MEA. I would ask you please to consider the questions and facts below.

1. Precisely what was Dr. Shepherd's involvement in the 1990 ME/CFS Cambridge Symposium?
2. Why did Dr. Shepherd sanction the psychosocial stance of the Myalgic Encephalopathy Association (MEA) for two years or more as Medical Director/Adviser of this charity before he spoke up? Why did he only go public in regard to his so-called `concerns' when his hours and income were cut, not before?
3. Why has Dr. Shepherd refused to provide to date the transparency, accountability and required information in regard to the MEA doings -both past, present and future prospects - that he campaigned for so assiduously out on the internet so that MEA members (both extant and potential) and the wider ME/CFS community can make an informed decision as to whether to support this currently failing charity or not?
4. On what basis does Dr. Shepherd liaise with Professor Simon Wessely (psychiatrist) as has been illustrated and evinced by the statement issued by the previous MEA Chairman, how often and why?
5. What is Dr. Shepherd's precise involvement with Action for ME (AfME), over and above the work that he already does for AfME/Westcare and his work with Colin Barton (AfME Affiliate) of the Kent & Sussex ME Group over the production of his new Guidelines?
6. Precisely what discussions have taken place between Dr. Shepherd and AfME regarding the sharing of premises between the MEA and AfME and the possible merger of the two charities amongst other issues? What was said and proposed during these discussions?
7. It is highly possible that the MEA charity will have to close due to the lack of income and the insufficient number of Trustees required on the Board to run this organisation. The other ME/CFS adult's charity in the field, AfME, is currently the subject of a public investigation due to the concerns raised over its psychosocial stance, policy and workings that are not condoned by subscribers. AfME has not held an Annual General Meeting that has involved its subscribers for the last eight years, since 1996. AfME subscribers have been completely disenfranchised. Why does Dr. Shepherd refuse to rule out the possibility that the MEA will be merged with AfME? Is this because Dr. Shepherd hopes to gain lucrative employment as a Medical Adviser from AfME in the future - a charity that he is currently working with part time already?
8. Why does Dr. Shepherd, together with the psychiatric lobby, continue to sanction, promote and employ the term Myalgic Encephalopathy that has no disease classification anywhere in the world over and above the nomenclature of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome that has international neurological disease classification under ICD 10 - G93.3?
9. Does Dr. Shepherd not recognise that to change Myalgic Encephalomyelitis (ICD 10 G93.3) to Myalgic Encephalomyelopathy to please some doctors - the majority of them psychiatrists - is dangerous and not in the interests of patients? Especially since this is precisely what occurred when the 1996 Royal Colleges report came out with the subsequent labelling of CFS (with Myalgic Encephalomyelitis being subsumed under this umbrella term) as a mental disorder by those very same psychiatrists?
10. Why is Dr. Shepherd as Trustee of a supposedly patient focussed organisation not only colluding with the psychiatric lobby in their adoption of the term Myalgic Encephalopathy to the detriment of patients, but making the most determined of efforts to ensure that the psychiatric lobby and the Department of Health adopts it?
11. Why does the very mention of Dr. Shepherd's involvement with HealthWatch and Professor Wessely result in a blizzard of letters and threats of litigation? If Dr. Shepherd has nothing to hide, why is this issue so clearly very sensitive?
12. Why do any comments or questions posed in relation to the conduct of Dr. Shepherd both in the past and in the present, immediately result in a blizzard of litigation threats?

BACKGROUND INFORMATION

? Dr. Shepherd took the personal initiative to have the Myalgic Encephalomyelitis Association renamed as the Myalgic Encephalopathy Association.
? The MEA went down the psychiatric/psychosocial route and lost all the confidence of its members. It has insufficient funds and not enough Trustees to currently continue operating.
? As Medical Director/Adviser of the MEA, Dr. Shepherd proactively sanctioned and promoted the MEA and therefore the psychosocial stance of this charity for many years.
? It was not until Dr. Shepherd's hours and income were cut by the MEA that Dr. Shepherd made any protest whatsoever over this stance.
? Dr. Shepherd then campaigned on the internet and called for change and a palace revolution within the MEA. His manifesto stated that if he was elected Trustee, the affairs of this charity would in the future be conducted with transparency and accountability as is required by the Charity Commission of England and Wales.
? At the MEA Annual General Meeting (AGM) before Christmas, the MEA Chairman Anne Campbell resigned together with other of the Trustees. Val Hockey, the CEO, was made redundant.
? Dr. Shepherd was then appointed a Trustee, Mr. Chris Ellis was appointed the new MEA Chairman, two other new Trustees were appointed also and two remained from the existing Board. No full and frank disclosure of information was given to MEA members at that time.
? On the 26th January 2004 the MEA Chairman issued a statement that clearly illustrated that the Board of Trustees was and still is in complete disarray, that the financial affairs of the charity are in chaos, no cogent information was forthcoming and that Dr. Shepherd was seeking to hold formal talks with the charity Action for ME (AfME). This news was greeted with considerable dismay by MEA members and the wider ME/CFS community because AfME has also lost the confidence of its subscribers and is currently undergoing investigations by the Charity Commission. AfME is also the subject two written questions posed in the House of Lords.
? On the 27th January 2004 Dr. Shepherd issued a rebuttal statement to counter the statement made by the MEA Chairman the previous day.
? On the 18th February 2004 the MEA Chairman issued a statement to say that he has resigned. He cites irreconcilable differences between the Trustees; that he cannot work with Dr. Shepherd; that Dr. Shepherd liaises frequently with Professor Simon Wessely (psychiatrist); that Dr. Shepherd has suggested that as the MEA Chairman, he should do the same; that Dr. Shepherd is motivated purely for his career interests and not those of patients and acting as a Trustee of a patient focussed organisation; that Dr. Shepherd has been in touch with AfME regarding the sharing of premises between the MEA and this discredited charity; that a formal meeting between AfME and the MEA had been suggested by Dr. Shepherd presumably to discuss a merger between the two charities.
? On the 22nd January 2004 in the House of Lords debate led by the Countess of Mar, the classification issue of Myalgic Encephalomyelitis/Chronic Fatigue syndrome is brought into high relief. The Health Minister Lord Warner is forced to subsequently apologise over the fact that CFS has been erroneously classified as a mental disorder by the WHO King's College Collaborating Centre (Home of the Wessely School of Thought) and that he has been incorrectly briefed. The WHO Geneva issues information that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is confirmed as a neurological illness under ICD 10 - G93.3.
? The WHO Collaborating Centre King's College is forced to issue erratum slips and make website amendments due to their mal classification of CFS as a mental disorder.
? Instead of welcoming this triumph for the patient community, Dr. Shepherd, the Myalgic Encephalopathy Association Trustee, shifts his focus away from the MEA difficulties and goes into high gear over his promotion of the term Myalgic Encephalopathy that has no disease classification whatsoever. Dr. Shepherd's friends and colleagues in the psychiatric lobby with whom he liaises greet the ME-opathy term with high delight and begin to use it in the media. Dr. Shepherd's rationale for adopting the ME-opathy term is that the use of this term makes his friends and colleagues in the psychiatric lobby feel more comfortable.
? Dr. Shepherd then announces in public that the term Myalgic Encephalomyelitis with its international neurological disease classification is "ridiculous" despite the fact that this is the term that is used by expert clinicians who work in the field worldwide including Dr. Shepherd's previous mentor, Melvin Ramsay and the ME/CFS community both in the UK and worldwide.
? Massive dissent in the ME/CFS community is caused by Dr. Shepherd's insistence that the term ME-opathy be adopted in order to make his friends and colleagues in the psychiatric lobby feel more comfortable. Highly respected charities such as Tymes Trust refuse to adopt it and state that to change the name of a disease that already has neurological classification to one that has nothing simply in order to temporarily please certain doctors is exactly the same thinking that led to the WHO Collaborating Centre Kings College action over the dual classification of CFS.
? It is still the case that no full and frank disclosure or the provision of the required information to MEA members both extant/potential and the wider ME/CFS community has been given in order for the patient community to make an informed decision as to whether to support this charity or not.
? The Charity Commission of England and Wales states that it is mandatory for any charity to conduct itself with transparency and accountability. In the case of the MEA, nothing has changed. It still conducts itself with utmost secrecy and attempts to do deals in private behind the scenes such as the collusion by Dr. Shepherd with AfME as has been illustrated by the previous MEA Chairman in his statement.
? The resignation of the MEA Chairman now leaves only five Trustees on the Board. This means that the MEA charity cannot currently operate because the minimum constitutional requirement is seven Trustees.
Dr. Shepherd must now answer these most legitimate of questions in full raised by MEA members and the wider ME/CFS community with no further prevarications.

Jane Bryant
The One Click Group

ME International

Posted by peter200015 at 10:43 PM EAST
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Sunday, 29 February 2004
ME/CFIDS/FM/CFS Support
Byron Hyde MD
The Nightingale Research Foundation

I am in an unusual position among ME/CFS disabled individuals. I am probably the only one in North America who has certain curious qualifications.
(1) I have been studying the disease processes leading to this illness since 1984 like Dr. Bell and a few others.However, there is more. Due to the curious health systems in the world,
(2) I and physicians in Canada can access any medical test available in Canada without cost to the patient. There are a few exceptions and these in the area of Neuropsychological testing that costs circa $1,500 and QEEG that are computer driven EEGs but we do access these at no cost for native Canadians and those whose cases I aminvestigating for unions. Patients involved in court cases can also get their costs back if they win and I usually win in court if I find sufficient grounds to take on the case. Other Canadian physicians can do the same think but few have the time in on investigation and in addition you simply cannot earn a living in this type of work. So no other Canadian physicians have done what I have done simply due to the fact they would be bankrupt. I makemy funds by winning legal cases for my patients. Believe me it doesn't make much money in Canada and any school teacher would be paid more than I am. However the work is fascinating and I wouldn't leave it for any money. The Americans are blind sided to some degree since they cannot write the tests on every patients that I do since their private and government insurances simply do not allow this. In addition, it is my belief that most clinical research is performed in the US with patients who are on welfare, who have no insurance and who claim they have ME/CFS to obtain free medicine. Many of these people are depressed or mentally aberrant and so this skewers the US figures. I worked for one day in a very prominent US clinic that produces an enormous amount of CFS paper and literally none of the patients had been accessed to any degree and most were depressed or suffering from obvious problems that it serves no purpose in getting into.

In my investigations of ME/CFS patients I find pychiatric disease but only in 3-4% of patients investigated and this is clearly less than the amount of psychiatric disease found in the general public. Why should this be. Cleary my population of ME/CFS patient have achieved considerable academic or financial advancement in relation to the general public prior to their falling ill. To achieve these goals one has to be not only bright but also must have less depression or other limiting psychiatric diseases. Over 15 years we reviewed some 2000 of our patients and what we found was that the biggest incidence of illness by profession per 10,000 population and this was among lung assessment technicians, all in constant contact patients with chronic or acute infectious diseases.
The group of ill patients in sheer numbers were those in the health and teaching professions. Front line workers in infectious disease. Among these two groups, the individuals who had the highest levels of illness were health care workers and teachers involved in residential schools and hospitals for the mentally ill or chronic disabled children. In both environments, areas of rapidly spreading infectious disease and those with decreased cleanliness caused by their disability and proximity. Then again there are the multiple epidemics, several that I have studied personally. One has to come to the conclusion that we are dealing with the consequence of infectious disease.

Who among these groups actually fall ill since not all of them do. That too has become increasingly clear.
(1)_ Individuals with previous significant head trauma so that the blood brain barrier is probably injured and allows infectious disease more ready access to the brain,
(2) individuals who have prior immune dysfunction
illnesses or conditions and more likely to become involved in autoimmune diseases,
(3) patients who have an employment where work & home conditions allow them to become chronically over exhausted such that these individuals cannot react to routine infections with a normal immune response,
(4) patients in the first few weeks after receiving Recombinant Hepatitis B immunization where some may be immune depressed at the time of immunization and some may encounter a neurotropic infection immediately after immunization.
Recombinant Hepatitis B immunization is manufactured to form a sequence of the surface antigen of Hepatitis B and although this sequence is not infectious nor can it apparently be reproduced in the body, the surface antigen of Hepatitis B is known to paralyse the immune system temporarily and allow minor neurotropic infections to become chronic and recognized as self during this period of immune paralysis.

I don't believe that those pushing for a psychiatric identity for ME patients have ever done any in depth investigation of their patients.
Psychiatric definitions tend to be made on a shoot from the hip basis in which the physician acts on total faith of their own mythology and simply has turned their backs to the wealth of investigational tools that we have today. As you also know, many physicians and psychologists who have attempted to state these patients are primarily or in a large part psychiatric are supported by the pharmaceutical industry or insurance companies in various manners.
This connection also gives these individuals vast abilities to access the medical medias of publication of "scientific literature".

Byron Hyde MD
The Nightingale Research Foundation
121 Iona Street
Ottawa, Canada, K1Y 3M1

Posted by peter200015 at 11:03 PM EAST
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Thursday, 19 February 2004
ME/CFIDS/CFS/FM more UK
Why did Chris Ellis resign?

Reposted from Chris Ellis:

I have waited sometime before coming forward with my own statement on my resignation as Chairman of the MEA. The counter punch is always easier.The Board, however, nearly spiked my guns by deciding, very wisely, to cite "irreconcilable differences" as the reason for my departure, a most apposite phrase. Certainly, it was in complete contrast to an earlier draft statement which was unaccountably sent to me and which was loaded with " it was all agreed" all over the place- an obvious travesty of the truth.

Unfortunately, the authors could not resist the luxury of a littleput-down which gives me an excuse for replying in the same vein. Afterall, Sir Thomas More, later a saint no less, said that "let a person step on your toe in the morning and by evening (he) will be stepping onyour face. Or, if you would "nemo me impune lacessit" -ah you can always tell the old Grammar School boys.

It is this "acting" Chairman bit. A few weeks earlier, the final MEA proclamation of intent had been produced (and not by me) over a clear "Chairman" etc. authority. On resignation, I appear to have been demoted .Well now, "reluctant" yes but "acting" I will not have. I seem to remember single-handedly setting up and organizing the unning of an open-ended E-mail Board Meeting from mid-December onwards to enable actions to be taken by an otherwise paralysed Board. At the Board Meeting on 20th Jan, I seem to have been the only trustee to have taken the trouble to arm himself with the relevant details of current bank accounts, expected income flow on a monthly basis and figures related tto immediate liabilities.

If one wanted to apply the word "acting" one might do so to the previous Board from whom the parlous state of the MEA was inherited and, in particular to the Treasurer for the past two years, who remains uundaunted as Trustee. I hold no personal rancour since I have only met the man once and spoken to him on the telephone twice only but the record speaks for itself. At that meeting on 20th Jan, called essentially to discuss the financial viability of the MEA his sole suggestion was that we use an Auditor's report dating back nine or so months i.e. before the Appeal made by the MEA and before the Val Hockey redundancy package all of which had some little bearing on the matter under discussion.(Incidentally, as it turned out, the Appeal Fund might well be named The Val Hockey Redundancy Fund). When the "acting " Treasurer for the past 2 years was unable to tell the Board which monies in a particular account were available to cover immediate expenses and which part of same were reserved for research then all calculations became absurd.

Before continuing, I wish to make one thing clear. Insofar as the new Board are having to tackle the horrendous problems left by the previous administration they deserve everybody's support. However, insofar as their initial steps or lack of them to solve the problems are concerned then herein lies my reasons for resigning. Why are the two remaining members of the old Board left to obstruct progress? Can you see a new Tory government continuing with Gorden Brown and John Prescott in tthe Cabinet? Starting in December, with their wrangling over certain proposed articles in the Magazine and then on to their opposition to the newly proposed policy for the MEA, the two members of the old regime are allowed to continue with a policy of resistence. As predicted by me in my previous E-mail they are fighting word by word and I know this because, yet again unaccountably, I was sent an E-mail outlining opposition to the need to update MEA literature in line with the new direction of the Association.

One really upsetting factor for me was to find the prodigal spending of the Association in respect of premises. The business which I owned prior to retirement occupied one tenth the area and yet had six times the turnover, three times the staff and paid the equivalent of a fifth of the rent. Why Buckingham? Well it was near the home of the then Chief Executive and given the importance of this function, not an unjustifyable choice when stated alongside the reason that "rents in Milton Keynes are more expensive". However, for the new Board to contemplate staying because of "valued staff" and because "Buckingham is cheaper than Milton Keynes" yet again, seems to me absurd. Is this a national charity or what? Is Milton Keynes a national first alternative or what? Do not many members have to pay for all this out of meagre Benefits? I give up.

So there it is and yet I would have stayed on if only I had had just one solid supporter. Dr Charles Shepherd? I am sorry to say I think not. As our good correspondent, Robert Napier has succinctly put it, the medical profession is run on an hierarchical basis and Dr Shepherd is compromised by his need to act accordingly if he is to make progress in his career. Notwithstanding this realisation, I had always kept Dr.Shepherd in good regards and just before 20th Jan when the Hooper Report came out, I had written to him offering him my support against his accusers in that document. Then came the Board Meeting, on the way home from which the penny dropped. Three separate remarks by Dr Shepherd came into fusion. Firstly,I remembered that Dr.Shepherd had floated the possibility of sharing premises with AfME when the question of the MEA lease was being discussed. (Unthinkable as the two lady comrades themselves expressed to their credit whilst the two old guard looked on amazed at the opposition.) Secondly, he advised that he had been speaking to Chris Clarke and reported that a meeting with him and his Chairman had been discussed. I was left to decide the venue. Finally, in an aside, he told me conversationally that he often talked with Simon Wessley and "if only he had half an hour to spare I could ...." and here we were back in the Board discussion. On the train home it came to me that he had been about to take on the position of apologist for Simon Wessley. You know, the sort you have all heared before. The sort that runs ...Hitler was not all bad. He built the Autobahns, you know. He rebuilt the German economy. Well, dear readers, make what you like of the above. I have formed my own opinion.

I may well be back in true Arnie fashion. All that is needed is six good men/ women.Good and true.

CHRIS ELLIS ( FORMER CHAIRMAN OF THE ME ASSOCIATION)

Posted by peter200015 at 11:23 PM EAST
Updated: Thursday, 19 February 2004 11:33 PM EAST
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Friday, 13 February 2004
ME/CFIDS/CFS/FM more UK
Montague and Hooper reply to Dr Shepard and HealthWatch

Part 2 Continued from Feb12(part1)

Re: HealthWatch



1. ????? In his letter of 11 July 2001 HealthWatch Chairman and solicitor Malcolm Brahams of Messrs David Wineman (Craven House, 121 Kingsway, London WC2B? 6NX)? states that the Montague / Hooper paper? "makes a number of statements about HealthWatch which are completely inaccurate and are almost certainly defamatory".? In his subsequent letter of 13 July 2001 enclosing a submission (which Dr Shepherd states in correspondence he asked the HealthWatch Press Officer Michael E Allen to prepare), Malcolm Brahams further states: "There are no grounds whatsoever for suggesting either that we are funded by drug companies or that we were set up to serve their interest.? Your assertions to that effect are unjustified and are an insult to the highly qualified and hard working people who make up my committee".



2. ????? In the accompanying submission? (the one which also appeared on the HealthWatch website), it states:



(i) ????? ? "HealthWatch is funded in the main by membership
subscriptions.? In the distant past, small sums have been received from Pharmaceutical Companies".

(ii) ????? ?? "HealthWatch has issued a number of Position Papers which contain views endorsed by the committee....we have looked at all these
and cannot find the? phrase represented as if a quotation:? `Diagnoses...that may encourage unnecessary treatment for non-existent diseases'"

(iii)?? "Some of our members are opposed to various methods of treatment "

(iv)? "Membership of HealthWatch is open to anyone who agrees with our constitutional aims".



3.? In his various correspondence Dr Shepherd states about HealthWatch:



(a) ????? "It is untrue to say that HealthWatch is funded by drug
companies"

(b) ????? "It is untrue to say that the clearly- stated aims are to promote pharmacological interventions and oppose all forms of alternative and complementary forms of therapy.? No such statement exists"

(c) ????? It is untrue to say that HealthWatch is specifically opposed
to specific interventions such as homoeopathy, acupuncture, dietary modulation etc. Recent speakers at HealthWatch meetings have included John Diamond (the distinguished journalist who recently died from cancer)

(d) ????? It is untrue to say that membership is only open to those who promote the pharmaceutical industry



Shepherd categorically states :? "There really is no evidence to support these highly derogatory allegations about HealthWatch".???? We respond to these various points in conjunction with each other.



4. ????? re: Healthwatch being funded by drug companies.????? We note the admission by the Press Officer of HealthWatch that in the past,
the organisation has received money from Pharmaceutical Companies.? In our belief that this was indeed the case, we relied upon the book Dirty Medicine, which states



???????????? "In 1992, the minutes of the Campaign Against Health Fraud? (the name of the organisation before it changed its name to HealthWatch) Annual General Meeting disclosed that in the year 1991-1992 the Campaign received a grant from the Wellcome Foundation.? Other granting bodies included medical insurance companies and other pharmaceutical companies".



????? The book also makes it plain that it was public knowledge that
the Campaign was? funded by the Wellcome Foundation.?



?????? We further rely upon Hansard (Lords) 28 April 1993:364-382, which records a debate in the House of Lords in which the Earl Baldwin of Bewdley said:



"Drugs company money has gone into Healthwatch, the body that has set itself up to expose unacceptable practices in medicine (but unacceptable, one may ask, according to whose agenda?)...
I know of examples where highly promising lines of research into? complementary medicine are being stifled by the influence of drugs company funding....Vitamins and minerals cannot be patented".





?????? We also rely upon Hansard (Lords) 10 May 1995:66-68, which
records another? debate in the House of Lords in which the Countess of Mar said:



???????????? "Is the noble Baroness? (the Minister of State, Home Office) aware of the activities of an organisation - formerly the Campaign Against Health Fraud and now called HealthWatch--which has been systematically destroying the reputations of people working in complementary medicine, particularly those in nutritional medicine??????????????? The information which HealthWatch has provided to the media has subsequently been proved false...."



??????? The Minister of State replied:



??????????????? "The noble Countess is right in saying that HealthWatch has been subject to investigation....if any organisation uses its funds in order to campaign against another organisation on the basis of flawedresearch,the Charity Commission will be concerned".



???????? The Countess of Mar said:



??????????????? "Does the noble Baroness approve of the fact that the organisation is supported by the Wellcome Foundation and by Private Patients Plan, amongst other pharmaceutical and insurance companies?"



?????? On the basis of the above, we cannot accept either from Dr
Shepherd or from the Chairman of HealthWatch (acting in his dual capacity as a solicitor in the firm of Messrs David Wineman) that what the paper stated about HealthWatch was ? defamatory. Moreover the information upon which we relied was already in the public domain.

?

5. ????? re: the claim by HealthWatch that no statement exists which
says that the organisation? opposes "Diagnoses...that may encourage unnecessary treatment for non-existent? diseases".??? We note the acknowledgment by the Press Officer of HealthWatch (Michael E Allen) in his Submission which accompanied a letter dated 13 July 2001 to Professor Hooper from the Chairman of HealthWatch that? "we have looked...and cannot find the phrase represented as if a quotation: `Diagnoses...that may encourage unnecessary treatment for non-existent diseases' ".



???? The information upon which we rely comes from the HealthWatch organisation itself.

???? It is the HealthWatch Subscription form for 1990, a copy of which we possess.? That document gives a contact telephone number (then given as 01-673-4401) and the document clearly states the campaign's aims as being? " To promote...Better understanding by the public and the media that valid clinical trials are the best way of ensuring public protection.?? To oppose...Diagnoses that are misleading or false, or that may encourage unnecessary treatment for ...non-existent diseases".???? Quite certainly Simon Wessely unceasingly promotes his belief that despite it being? formally classified since 1969 in the WHO International Classification of Diseases as a neurological disorder, ME is a non- existent disease? (for example: Microbes, Mental? Illness, the Media and ME: The Construction of Disease.? Simon Wessely.
The 9th Eliot Slater? Memorial Lecture, London, 12 May 1994;?
Eradicating ME: Report of a meeting held on 13 April 1992 at Belfast Castle. Pfizer / Invicta Pharmaceuticals:4-5).



???? The HealthWatch document also states:


?????????????????? "The Campaign Against Health Fraud (`Quackbusters') exists to combat the growing problem of quackery.It was formed by a group containing doctors, lawyers, journalists and others who are worried that quackery has acquired a veneer of respectability and has worked its way into otherwise respectable news media. It plans a programme of public
information..."



?????? The same HealthWatch document also states (in bold type) "Leading members of? the Campaign include.... Professor Iain Chalmers.... Dr David Pearson....Dr Chris Bass....Dr Simon Wessely" (amongst others).



????? We therefore retain our belief that we made no "false or misleading allegations"? about HealthWatch.



6. ????? re: HealthWatch being opposed to alternative and complementary medicine?????? We note that in the Submission prepared by the HealthWatch Press Officer, it is acknowledged that some of the Campaign's members are opposed to various methods of treatment.



?????? It is known that HealthWatch members appear generally to be opposed to the use of? non-pharmacological interventions, especially treatments which are referred to as ????? "alternative and complementary" such as dietary modulation and nutritional supplementation.?



?????? This often-stated position of HealthWatch members is clearly of some relevance in the organisation.? It becomes even more relevant when members or associates of HealthWatch sit on Government advisory committees.



?????? In the past, HealthWatch members (including Dr Charles
Shepherd) have been involved in a number of cases where medical practitioners were brought before the? Court, professional tribunals and media regulators.? Members of the charity have also been involved in public and highly critical media exposure of medical practitioners ? who practise alternative and complementary medicine.



?????? We refer to the fact (mentioned in correspondence by Dr
Shepherd) that the late John? Diamond was a speaker at HealthWatch meetings.? In this respect, we recall that ?????? John Diamond received the HealthWatch `journalist of the year' award and that he was well-known for his regular articles in the Saturday Times Magazine and in other media outlets (including television) in which he attacked alternative and complementary therapies.



????? In view of the above, we retain out belief that we have made
no "false or misleading allegations" about HealthWatch.



7.?? re: membership of HealthWatch



???? We here rely on our knowledge that membership of HealthWatch has been refused to those who promote `natural' medicine. Further, whilst professing that " Membership is open to anyone who agrees with our constitutional aims", the organisation's own literature states "Applications are subject to approval by a Membership committee".





With the above in mind, we retain our belief that no-where in the original paper did we make "false and misleading allegations" about Dr Shepherd or about HealthWatch, nor did we make a "personal attack" upon either Dr Shepherd, Professor Pinching or Professor Wessely.? On the contrary, we simply presented factual information.



We confirm that the original paper has been amended accordingly.



We also confirm that a copy of this document will be sent to Professor Liam Donaldson (Chief Medical Officer); to Professor Allen Hutchinson (Chairman of the CMO's Working Group on CFS/ME); to Professor Peter Fidler (Vice Chancellor, University of Sunderland) and to Ms Alison Steel (Head of Corporate Affairs, University of Sunderland).? A copy will also be sent to Dr Shepherd.



The known correspondence which Dr Shepherd has sent concerning the Montague / Hooper paper is listed in Appendix (3) to this present document.






Sally Montague

Malcolm Hooper?

Part3 tomorrow Feb14

Posted by peter200015 at 10:35 PM EAST
Updated: Friday, 13 February 2004 10:38 PM EAST
Post Comment | Permalink
Thursday, 12 February 2004
ME/CFIDS/CFS/FM UK Scandal
Montague and Hooper reply to Dr Shepard and HealthWatch


Part 1

Without prejudice          For information



Response by Montague and Hooper to criticisms about their paper dated 1st May 2001 (Concerns about the forthcoming UK Chief Medical Officer's Report on Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS), notably the intention to advise clinicians that only limited investigations are necessary) raised by Dr Charles Shepherd and by HealthWatch





Introduction



In May 2001 Professor Malcolm Hooper and Sally Montague produced a draft discussion paper entitled "Concerns about the forthcoming UK Chief Medical Officer's Report on Myalgic encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS), notably the intention to advise clinicians that only limited investigations are necessary".  The paper was sent to a few concerned individuals for their comments.


The arguments expressed in that paper fell into two main categories:
firstly and most importantly were our concerns about the fact that certain members of the Chief Medical Officer's Working Group on CFS/ME were advising that only limited clinical investigations are necessary in cases of ME/CFS.  Such advice contrasts with a key concept which emerged from the Fifth International Research and Clinical Conference of the American Association of Chronic Fatigue Syndromes held in Seattle in January 2001, namely that basic laboratory testing is not sufficient for patients with this complex disorder and that advanced immunological tests including immune
function and antibodies to the neurological system are needed.



Moreover, compelling evidence was presented at Seattle which demonstrated that contrary to the belief of some members of the CMO's Working Group, there is no relationship between the number of
medically unexplained symptoms and psychiatric disorder;  specifically, psychiatric disorder is not a core aspect of CFS/ME. 
These findings were set out in the Montague / Hooper paper.



Secondly, concerns were expressed in the paper about the affiliations and involvement of some members of the Working Group with HealthWatch, a charity which has campaigned against alternative and complementary medicine, and against concepts of food allergy and
chemical sensitivity.



No-one associated with the Montague / Hooper paper is opposed to orthodox pharmaceutical intervention when appropriate.  Our concern is that in ME / CFS, not only are many patients unable to tolerate
such interventions but also that food and chemical sensitivities are an integral component of the disorder.  There is an extensive literature on this point. (For illustrative references 1984 - 2000,
see Appendix 1 to this present document). 



This being so, we believe that given the current lack of useful pharmacological intervention, complementary and nutritional management options should be given fair consideration.



Our concern was (and remains) that an inappropriate psychiatric model of management will be recommended in the forthcoming CMO's Report on CFS/ME as the treatment of choice, and that such recommendations will militate against comprehensive investigation in a clinical setting.



Inevitably, if such management approaches are recommended in a Government report, they will become approved NHS policy for such patients.



Furthermore, we remain concerned about the apparent determination of some members of the CMO's Working Group to deny the existence of ME and to insist that it is synonymous with CFS.



On this point we are mindful that since 1969, ME has been classified in the International Classification of Diseases under disorders of the nervous system (WHO: ICD 8: code 323, page 173) and that ME is
still thus classified  (ICD 10: G.93.3). 



By direct communication, the World Health Organisation has confirmed to the authors that there are no plans whatsoever to remove ME from its formal classification as a neurological disorder and to re-
classify it in the psychiatric section in the next ICD (Version 10.2) which is due in 2003.



Specifically, we have been advised by the WHO that when considering the correct classification for ME /CFS, the syndrome should be regarded as neurological, and that fatigue states which are
classified at section F 48 as "Behavioural and Mental Disorders"do not relate to ME  ( a claim which has frequently been made by some members of the CMO's Working Group).



ME has been documented in the medical literature since 1938.  It used to be known as "atypical poliomyelitis" and neurological deficits are an integral component; it was accepted as a nosological entity by the Royal Society of Medicine in 1978. 



By comparison, "CFS" did not exist until 1988 and its case definition was based on the symptoms of glandular fever.



Whilst we accept that ICD classifications change over time as medical knowledge expands, we and many others are increasingly concerned that, under sustained pressure from a group of psychiatrists known colloquially as the "Wessely School" (ref: Hansard(Lords): 19 December1998:1013), the CMO's forthcoming Report regards the two distinct conditions as one and the same. On this point we are
profoundly concerned that some members of the CMO's Working Group believe that the matter of distinguishing between those with ME and those with CFS (or between subgroups of CFS)  "may be considered a matter of semantics and personal philosophy".



It is perhaps worth remembering that the American term  "CFS" has come to reflect those patients who are likely to have ME rather than a psychiatric disorder as described by the 1991 (Oxford) CFS case definition (much used by psychiatrists of the Wessely School, who were participants in its formulation).  That case definition of CFS specifically includes those with psychiatric illness and has thereby led to considerable obfuscation which possibly underlies the differing response to different management approaches. 



Having provided a summary of why the authors of the Montague / Hooper paper considered it necessary to voice their concerns, the authors here address the criticisms levelled at them personally and at their
paper by Dr Charles Shepherd and HealthWatch.





re: Professor Malcolm Hooper



1.       Professor Hooper was one of the authors and as is recognised practice, his name and mail address at the
University of Sunderland were quoted on the front page of the document.



2.       The paper was not submitted to any journal for publication and no deceit has taken place by the use of a pseudonym.   The reason for the collective name was made public on 7 July 2001. It is because some of the contributing authors are themselves severely affected by ME and are not well enough to deal with the anticipated critical onslaught which, in the event, has come from both HealthWatch and Dr Shepherd.



3.       As Emeritus Professor, Malcolm Hooper does not fall within
the jurisdiction of the University of Sunderland so the University takes no position in this matter.



4.       The authors did not put the document on the internet and no
responsibility is accepted      by them for any amendments by unknown others which have not been authorised.

       The authors have no responsibility for or connection with any website.





re:  Dr Charles Shepherd



We note that Dr Shepherd has not addressed the fundamental issues in the Montague / Hooper document. He fails to address the wider concerns set out by Montague and Hooper and instead he has concentrated only on what he considers to be his personal position.



1.       "In our view, as Medical Director of the ME Association, Dr Shepherd is supposed to be representing members of the ME Association and he therefore has an obligation to represent the best interests of all members of the ME Association who have to rely on his advocacy"



      On reflection, we have clarified this to read:



       "Dr Shepherd is Medical Director of the ME Association; in this role, he is charged with representing the medical interests of Association members".



2.       "We believe that this should involve actively pressing for the setting up of research units and specialist clinics within the National Health Service for ME/CFS sufferers, certainly not concurring with the psychiatrists' recommendation and advising that only limited investigations are necessary for such patients "



       On reflection, we have clarified this to read:



      "The approach which Dr Shepherd takes to the diagnosis and
treatment of ME in respect of the ME Association is entirely a matter for him and the members of that  Association.  Dr Shepherd has over the years shown himself to be committed to the cause of ME.  We, however, are of the opinion that any Government review of this disorder should advise the setting up of research units and specialist clinics within the NHS.  We also believe that the best interests of patients are not served by following a psychiatric or behavioural model of evaluation which suggests that only limited investigations are necessary for such patients. As mentioned in the original paper (reference 58), UK researchers looked at the common neuroendocrine tests (which are often normal in ME/CFS) and concluded that the tests were inadequate for ME/CFS patients. We are strengthened in our belief by the fact that in July 2001 the American Medical Association issued a statement explaining that 90% of CFS/ME patients show normal test results on basic investigations and that studies designed for specific subgroups are needed. Professor Anthony Komaroff stated:
"Researchers are already using imaging technology to measure brain hormones and are examining the function of the immune system.

There is considerable evidence already that the immune system is in a state of chronic activation in many patients with CFS".  (ref: AMA, Co-Cure, 17 July 2001).



3.       "Dr Shepherd's own private beliefs are a matter only for him, but at present his private beliefs seem to be influencing his professional obligations to the patients he represents and to be adversely affecting decisions which are being made on behalf of those patients".

      On reflection, we have deleted this sentence from the paper.



4.       "We believe that such advice is at variance with good medical practice and that assessment of these patients should be particularly thorough; we are not alone in this view, because US Professors Fred Friedberg and Leonard Jason make the point in their recent book (8), noting that "Some physicians make the odd assumption that we know all we need to know about these illnesses, thus obviating the need for further research and greater understanding of these patients".



     On reflection, we have clarified this to read:



     "As we will show in this paper, it is clear that best clinical
practice in this area is increasingly being understood to involve a comprehensive battery of sophisticated tests to facilitate a better understanding of this complex disorder.  US Professors Fred Friedberg and Leonard Jason make the point in their recent book (8), noting that  

      "Some physicians make the odd assumption that we know all we need to know about these illnesses, thus obviating the need for further research and greater understanding of these patients".



5.       "In our opinion, for the Medical Director of the UK ME
Association to advise that no RNase L investigations are necessary defies reason".  "From these illustrations, we believe it may be appropriate for the Medical Director of the UK ME Association to be required to supply a credible explanation as to why he recommends that investigation of urinary markers in ME/CFS is `unnecessary and unproven".



      The matter of these sentences seems now to have been resolved by Dr Shepherd himself in his letter dated 17 July 2001 to the Chief Medical Officer.  In his letter Dr Shepherd states  " I acknowledge that I have opposed the inclusion of testing for RNase L (an antiviral marker) and CFS urinary markers ( a test which is advocated by a group of Australian researchers)....One of the major problems with both of these tests is that all the published information so far comes from researchers who have a financial interest in their promotion - a situation which involves a clear conflict of interest".  We will now include this explanation in the paper.



6.       In correspondence to the CMO, Dr Shepherd claims that "I have been singled out for particular criticism on the grounds that .... I have exerted undue influence in persuading my colleagues on the Key Group to arrive at their conclusions in relation to the process of diagnostic assessment".  Nowhere in the paper does it state or imply that Dr Shepherd has "exerted undue influence" over his professional colleagues on the Key Group.  The paper states simply that Dr Shepherd has advised the Key Group that only limited investigations are necessary.



7.       In correspondence, Dr Shepherd makes the point that the concerns expressed in the paper should first have been directed to a representative of the CMO's Working Group.  In fact those involved with the paper made substantial attempts to do so but were repeatedly thwarted.  Correspondence has gone unacknowledged, including correspondence sent personally to the Chairman, Professor Allen Hutchinson. Letters sent directly to the CMO have been forwarded to Leeds to be dealt with by the NHS Executive.  Written submissions to Key Group members remain unacknowledged and appear to have been ignored.  Moreover, by letter dated 14 March 2000, Mrs Helen Wiggins of the NHS Executive stated:  "Regarding contacting members of the CFS/ME Working Group...as a result of numerous requests...and correspondence, a decision was made to stop facilitating these requests so that Working Group members would not be inundated with unsolicited correspondence".



8.       Dr Shepherd may have overlooked the fact that, as its title makes plain, the paper deals entirely with concerns about the intention to advise clinicians that only limited investigations are necessary in suspected cases of ME/CFS.  Concerning Dr Shepherd, therefore, the paper relates only to his advice to the Key Group on this one issue. 

      The paper does not question any other aspect of Dr Shepherd's
professional advice or ability.



9.       In correspondence, Dr Shepherd states that no attempt was made by the authors to check the way in which members of HealthWatch may be involved in the preparation of the CMO's report on CFS/ME.  No assertions whatsoever are made in the paper about the influence of members of the CMO's Working Group who are also members or associates of HealthWatch upon the preparation of the CMO's report on CFS/ME.



10.       In correspondence, Dr Shepherd states that the paper provides an inaccurate representation of some of the views of Simon Wessely on the cause and management of ME/CFS, specifically that  "It is untrue to state that Professor Wessely believes CFS is amenable to antidepressant medication " .  We refer to Appendix (2) to this present document, which provides illustrations of Professor Wessely's published views on the use of antidepressant medication in ME/CFS. 

It is upon those published views that the authors of the Montague / Hooper paper relied.



11.       In correspondence to Professor Hooper dated 10 July 2001, Dr
Shepherd states "It is untrue to state that the most influential members of the CMO's Working Group are all members of HealthWatch.  Apart from myself, I am not aware of anyone else on the entire Working Group who is a member of HealthWatch....the organisation has no influence whatsoever in the operations of the CMO's Working Group.  I shall be asking Professor Allen Hutchinson, Chairman of the Working Group, to also write to you to refute this allegation".  On reflection, we accept that the word "all" should be removed from the original document. We point out that Dr Shepherd must surely be aware that Professor Simon Wessely is a member of HealthWatch; Wessely has been a member of the organisation since its inception in the UK in 1989, and in HealthWatch's own literature, Wessely is listed as a "leading member of the campaign". It cannot, we believe, be in doubt that Professor Wessely is most influential on matters relating to ME/CFS.  From the sheer volume of his publications (which number over 200), it can be seen that his influence is phenomenal.  Wessely is a named member of the CMO's Working Group.  It is a matter of
public record that it was Wessely's own personal database of reference papers which formed part of the systematic review of the literature on the management of ME/CFS  carried out by the York-based Centre for Reviews and Dissemination. The CRD is a sibling of the Cochrane Collaboration, the body set up to prepare an international database of what its members consider to be the best management strategies for all medical conditions. Professor Wessely is said to be responsible for the section on ME/CFS. The Chairman of the Cochrane Collaboration is Professor Sir Iain Chalmers who, as Wessely, is listed in HealthWtach's own literature as being " a leading member of the campaign ". 

      To mention that Charles Shepherd and Simon Wessely are members
of HealthWatch does not, in our view, constitute a "very personal accusation", as claimed by Dr Shepherd, especially when that information is already in the public domain.



12.  In correspondence, Dr Shepherd states that the paper claims that HealthWatch is " running " the CMO's Working Group on ME/CFS.  This is misrepresentation on the part of Dr Shepherd: nowhere in the paper do the authors make any such claim. 



       The paper merely notes that the Working Group's most
influential members are members or associates of HealthWatch.





re: Professor Tony Pinching



1.       Dr Shepherd states in correspondence that the paper makes "false and misleading allegations"  about Professor Pinching.  The paper refers specifically to Professor Pinching's " involvement " with HealthWatch: it does not state that he is or was a member of HealthWatch.   It is a matter of indisputable published record that Professor Pinching has been closely involved with HealthWatch members. We have in mind his involvement as a member of the committee which produced the Royal College of Physicians' 1991 report   "Allergy: Conventional and Alternative Concepts" in the compilation of which leading members of the HealthWatch campaign were instrumental, notably Dr David Pearson and Caroline Richmond.  We are mindful that the draft version of that report was withdrawn on the grounds that Fellows of the College found it to be "wildly inaccurate" and misleading, and that it required amendment before being officially released.  We also have in mind Professor Pinching's association with the journalist Duncan Campbell (listed in HealthWatch's own 1990 literature as the organisation's  " Writer" and as a "leading member of the campaign");  our information in this respect comes from the book Dirty Medicine  by Martin J Walker. We note that in correspondence, Dr Shepherd refers to this book as  " a scurrilous  publication which should have no place in the referencing of a scientific paper ".  We are aware that book sold over 7000 copies and that it gathered outstanding reviews in a number of influential journals and papers, including the Guardian Saturday magazine. In correspondence, Dr Shepherd states about Dirty Medicine that it is  " a  book which  has quite rightly been withdrawn from sale".        That statement is untrue. The book was not withdrawn from sale.



2.       In our belief that Professor Pinching holds views common to

those of Dr Shepherd concerning the advice that only limited investigations are necessary in ME/CFS, we rely upon a paper entitled Chronic Fatigue Syndrome   by Anthony J Pinching published in Prescribers' Journal 2000:40:2:99-106.  In this article, of which Pinching was the sole author, he states  "over-investigation can be harmful....causing (patients) to seek abnormal test results to validate their illness".  Whilst no-one could dispute that "over-investigation " is counter-productive, few would go so far as to suggest that patients actually seek "abnormal test results to validate their illness". 

      It is this particular view which causes us to believe that Professor Pinching, like Dr Shepherd, considers that only limited investigations are necessary in ME/CFS.

      Our belief is further strengthened because in his article Professor Pinching also states " Complementary therapists....reinforce unhelpful illness beliefs.     Cognitive behaviour therapy...can substantially optimise rehabilitation.     The essence of treatment is activity management and graded rehabilitation ".



3.       Consequently, we retain our belief that neither of the
references to Professor Pinching   in the paper constitutes either "false or misleading allegations"  or a "personal  attack" as claimed by Dr Shepherd.




THEONECLICKPROTEST

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