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ME/CFS?/CFIDS Scandal UK
Monday, 15 March 2004
ME/CFIDS/CFS/FM more UK


THIS IS A STATEMENT OF PUBLIC INTEREST

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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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