The Scottish Parliament
All Party Group of SMPs on ME/CFS
Speech : Jane Colby
The Young ME Sufferers Trust
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.
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.