For completeness, here is the full text of Dr Margaret Macdonald's very strange article in the November 2003 edition of the MEA's Research & Scientific Bulletin in which she set out why she was resigning as ME Research Manager and Trustee:
The saboteurs of M.E. research – the work for people with ME will continue, but not here!
by Dr MARGARET MACDONALD
who has quit as MEA Research Manager and Trustee to found a new international group to research ME.
IN THE UK, we ought to be in the best position possible right now to make progress in obtaining solid research results into ME. The CMO’s report in 2002 stated categorically that ME needs to be taken seriously. The MRC strategy group of eminent scientific researchers produced an excellent report indicating their recommended way forward, and the MRC and others have made money available for research to begin.
However, the research effort is being totally undermined by particular individuals without the necessary expertise, experience or knowledge who are determined to bring the entire subject of ME research into disrepute.
Who are these individuals and what are they doing? Well, they are self-publicists who are continually in print expounding opinions on subjects in which opinion is not valid.
At The MEA, huge amounts of time have been spent dealing with them as we have a policy of fairness. But they know what they are doing – preventing any progress.
There follows a list of the issues about which these individuals never cease producing misinformation, half-truths and, worst of all, attacks on individuals whose only actions have been to support or carry out work on ME to the best of their ability and in the face of much easier options.
1 The name of the disease is NOT of any importance whatsoever as we do not know whether ME is one or 50 diseases. We have still no understanding of the disease or any clear indications as to what physiology or psychology is associated with it.
To go on interminably about preferred names is totally meaningless, wastes everybody’s time and brings those individuals and the disease into disrepute. Perhaps it helps them feel important to invoke World Health Organisation classifications but it does nothing to benefit progress in understanding the disease.
2 The conviction that ME is a ‘physical disease’ and not a ‘mental disease’ is another meaningless ‘opinion’, showing those who insist it is the ‘truth’ to be ignorant and bigoted. In reality we do not know whether ME is physical, psychological, or any combination of the two.
To object to a psychological approach is an insult to all those with classical ‘mental health’ problems. To use this as a way to refute accusations that patients with ME are malingerers is ridiculous and cannot be supported. Those who suffer back pain are also accused of malingering. People with influence who say publicly they feel certain it is a physical disease and spread propaganda in supposed support of this are a danger to patients and to the research effort. Modern medicine increasingly does not distinguish between mind and body and the terms psychological and physical are in the process of losing meaning in this context.
I restate we do not know the defect in ME and until we do all those people relying on their own ‘feelings’ or ‘convictions’ should keep them to themselves and not broadcast them to add to the distress and misery of those affected by the disease.
3 That only people with the disease are entitled to act on its behalf or have some superior knowledge is ridiculous. If this were generally true then research would stop dead. Help and support (which includes research) needs to be done by healthy, active, powerful expert people. People with cancer do not insist that only someone else with cancer can help them, but rather the opposite.
How does this propaganda harm all ME research? – by making ME an unpleasant subject area in which to carry out the research. This is achieved by producing a barrage of interference and propaganda aimed at scientists whose research does not support the individual’s prejudices; by demonising and abusing these scientists and doctors because they do not support the views described above.
Research can and must be challenged but this must be done constructively and by encouraging more (better) research. ME research is probably one of the most difficult research topics known to man as a result of its variability, intangibility and subtlety. However, there are many exciting avenues in disease research that both established and up-and-coming researchers can choose to work on. At the moment, ME is far from one of them.
Sadly, I can no longer continue with the research programme at the MEA as a result of this perpetual external interference, notwithstanding the support and enthusiasm of the organisation’s board, and chief executive. The MEA was far ahead in its vision for research but has been brought down by people bent on their own self-promotion acting as unelected, unaccountable and non representative spokespeople.
The involvement of top scientists, including Nobel Laureates, which had been underway, has had to be abandoned and cannot possibly succeed in the present climate within an MEA under perpetual attack by these same individuals.
This prospect has recently worsened by individuals aspiring to join the board of trustees of the MEA; individuals whose sole stated purpose is to establish all or some of the above dogma. I shall therefore regretfully be tendering my resignation as trustee and research manager.
Instead I intend to continue to work tirelessly (and unpaid) for the true understanding of ME by founding a new international research foundation dedicated to ME and named the M.E.D. Foundation [M.E.D.F.] If there are people reading this who, like me, believe that true understanding of ME can only come from research and who wish to support an intensive programme of ME research then I urge you to join me in this new venture. It is featured in a paid-for advertisement on page 2 of this Bulletin. It will also be appearing in other ME–related magazines.
This organisation is independent of the MEA. It will be totally free for anyone to join M.E.D.F, and we shall stand for promoting the highest calibre research into ME involving the most eminent of scientists drawn from all disciplines, a stringent peer review process to prevent accusations of preferentialism and self-funding as well as detailed involvement of interested people affected by ME.
Please send for more information if you are interested. If, however, you are one of the troublemakers then I urge you to consider carefully the damage you are doing, as you need to know that I firmly believe evil flourishes when good people do nothing.
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Special appeal thanks
THANK YOU to all those who have so speedily returned the disclaimer form giving us final agreement to use money from the May appeal. Thank you also to all those who have sent cheques with their forms. We are most grateful.
If you have received a letter asking you to sign a disclaimer and you have put it to one side intending to deal with it later, or to avoid the postal strikes, would you please return it as soon as possible to release the funds for use. Many thanks.
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As I've already posted upthread, the MEA and the Charity Commission were contacted about this apparent new charity and it came to nothing. The MEA published a notice in ME Essential assuring them that any cheques sent would be reimbursed.
She had claimed to me in a phone call that in the region of 3,500 people had responded to her advertisements and that the sheer volume was the reason why these were taking a long time to return. Whether everyone who had sent money had it refunded is unclear.
They were "interesting" times.
