# Sad news on the UK's ME Association (updated)



## Susan Purry (Nov 6, 2001)

I'm so disgusted! These were posted to the Co-Cure email list (www.co-cure.org) which sends out a lot of very helpful information on ME/CFS and Fibromyalgia. From Dr Charles Shepherd:


> quote:MAY BE REPOSTEDAs I assume that the MEA will not be making any form of public announcementabout the fact that they have sacked their only Medical Adviser withimmediate effect, I suppose I will have to do this for them......These are the relevant paragraphs from a letter sent to me by solicitorsacting for the MEA last night:'We are instructed by the ME Association (MEA) and refer to your internetpostings of 2nd, 5th, 7th, and 11th May 2003.You provide consultancy services to the MEA under a contract dated 1stOctober 2001. The contract was for an initial period of 12 months afterwhich it was to be renewed. It contained provision for immediatetermination if you should "do anything to bring the good name of the MEAinto disrepute". Further it contained a confidentiality clause.On 22nd April 2003, Val Hockey wrote to you to offer a three month periodof consultancy from 1st May to 31st July 2003, to provide certainconsultancy services at a monthly rate of ï¿½500. The offer was made subjectto drawing up of a formal contract, and it was agreed by you.In your internet postings, you have made statements which have brought orare likely to bring the MEA into disrepute. Some of your statements havealso been defamatory of the MEA and/or its officers and staff. Forexample...(I won't repeat them here)Further, your statements have breached the duties that you agreed to theMEA as its consultant, including the duty of confidence.MEA asked you to desist, but you have continued to publish untruestatements and statements about confidential matters.As a result of your behaviour, we hereby give notice on behalf of the MEAthat your consultancy agreement with the MEA is terminated with immediateeffect. You may no longer describe yourself as the MEA's Medical Adviseror purport to speak for or represent the MEA.You must not make any further statements in breach of confidence or thatmay be defamatory. If you act unlawfully and/or in breach of the legalrights of the MEA and/or its officers and staff MEA may bring action in theHigh Court against you in defamation, without further notice, and may seekan injunction and/or damages.MEA's trustees are willing to consider any legitimate concerns that you mayhave as to the future of the MEA and/or its management. If you do wish toraise any concerns, please send them to Ann Campbell in writing only, whowill respond (if a response is necessary) in writing.MEA hopes that you will see that, whatever you think of the MEA, itsofficers and staff, its work and fundraising will be impaired if youindulge in open criticism, and you are encouraged to support rather thanundermine the MEA'.At this state there are four important points that I wish to make to MEmembers:1 I am standing by my decision to reveal the fact that 3/7 trustees,including the former Company Secretary, resigned nearly two months ago. Andhaving been assured by the former Company Secretary in a communicationreceived only yesterday (14 May) that 'I congratulate you on your attemptsto challenge what is going on' and that the MEA statement concerning thecircumstances in which the three resignations took place is 'plainlyrubbish', I am not deviating from my interpretation of these events. Ibelieve there is now an urgent need for the MEA to make a statement on theconcerns that have been expressed by these trustees, as well as what hasbeen described last week in another ME charity publication as the'financial difficulties' facing the MEA. Members will then be able to makeup their own minds.2 The issue of money raised for research in the Ramsay Research Fund (RRF)is also becoming the subject of legitimate public concern. And having beencontacted by Louie Ramsay, Dr Melvin Ramsay's daughter and Patron of theMEA, only this morning (after she had been informed of my dismissal), Iknow that she, too, is extremely concerned about the future of the RRF. Ihave therefore written to Peter Stewart (MEA Treasurer) and Val Hockey(Chief Executive) to enquire whether this money is unambiguously'ring-fenced' for research purposes. And if it is not, whether it couldever be used for other purposes if the MEA is, indeed, experiencing the'financial difficulties' that have been referred to elsewhere. I believethat both MEA members and the Ramsay Family require some urgent reassurance(if this can be given) on this matter. And if this money is not (or cannotbe) 'ring-fenced', then I believe that urgent consideration must be givento transferring any money that is currently in the RRF to a body such asthe Melvin Ramsay Society (a move which would be fully supported by LouieRamsay) in order to ensure that it is only ever used for research purposes.3 In view of the many concerns being expressed by myself, other doctorswho advise the MEA such as Dr Anne Macintyre, members of the MEA Scientificand Medical Advisory Panel, and the members themselves, the Board of theMEA must now call an urgent EGM so that staff and trustees can answer themany perfectly legitimate questions that are being asked. I also believethat there is an urgent and moral duty on the Board to consult with themembers on the future of the MEA if it is indeed in the 'financialdifficulties' described by other people - a statement which has not,incidentally, been denied by the Treasurer or Chief Executive.4 A number of people from local groups have kindly come forward andoffered to set up a 'Legal Defence Fund' should the MEA decide to use itsmembers money to take action in the High Court. A fundraising appeal willbe launched next week, if necessary.Having been introduced to the MEA by the late Dr Melvin Ramsay, I haveacted as their Medical Adviser/Medical Director for the past fifteen years- much of which has been carried out in a purely voluntary basis orsubsidised from my other (fairly limited) sources of income - and believethat I have carried out my work in an extremely diligent and conscientiousmanner. I am obviously very upset to have to leave this post by beingsacked - a decision which I do not believe carries the endorsement of thevast majority of MEA members (who haven't actually been consulted aboutit). But having given a lecture to a packed audience in Gloucester lastnight, at which nobody who spoke to me had a good word to say about the MEA(and in particular its new magazine), I do have a sense of relief at nolonger being connected to a charity that is currently disliked or ignoredby so many of the people it is supposed to be helping. If, however, atsome stage in the future MEA members express a view that they want to see achange in direction at the MEA, and would like me to return as a medicaladviser, then I am more than happy to do so.Dr Charles ShepherdMEA contact details:4 Top Angel, Buckingham Industrial Park, Buckingham MK18 1THTel: 08707 44 30 11 and 08707 44 29 26Chief Executive, Val Hockey:<mailto:chiefexecutive###meassociation.org.uk>chiefexecutive###meassociation.org.ukCould I thank everyone who has been in touch with me over the past fewweeks as this has obviously been a difficult time for myself and thefamily. And can I assure everyone that I am not going away!Charles Shepherdï¿½*


and, again from Dr Shepherd:


> quote:MAY BE REPOSTEDBy pure co-incidence, at around the same time that my last message wasposted, the MEA have announced an URGENT APPEAL on their website(<http://www.meassociation.org.uk>www.meassociation.org.uk) for ï¿½150,000(yes, ï¿½150,000) in 60 days. And '...unless the minimum required amount canbe raised urgently the organisation will face the real possibility ofclosure'. So the trustees were correct....Dr Charles Shepherd


Also Dr Abhijit Chaudhuri has resigned from their Scientific and Medical Advisory Panel (he's a consultant neurologist).More from http://www.meassociation.org.uk/


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## Clair (Sep 16, 2000)

Oh Susan this is terrible news







I dont really understand all the manouvrings - not very good at reading long paragraphs - but the loss of such a good prominent Doctor! it sucks. Dr Shepherds book on ME has been like the bible to me - everytime I get frustrated and upset with my illness and the sutuation around it - I flick through and read and it cheers me up every time.Perhaps we could send a message of support to him? what do you think?


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## M&M (Jan 20, 2002)

What a nightmare!


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## plasmon (Sep 29, 2001)

Unofficial updates on the situation are likely to be found in a newsgroup like this one .Having re-read Dr Shepherd's second point, I wonder if/when the details of the financial accounts are published...


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## Susan Purry (Nov 6, 2001)

Posted to the Co-Cure email list (www.co-cure.org)


> quote:*Announcement of a Petition for an MEA EGM*A petition for an EGM of the ME Association is now available for signing bymembers of the ME Association.The petition can be signed on the Internet or alternatively it can bedownloaded by people who wish to collect handwritten signatures. There isan address available where handwritten petitions can be sent too.There is an e-mail address available for anyone who wishes to contact thepetition organisers.To sign the petition and for details of the above, visit: http://votexegm.users.btopenworld.com/ MAY BE REPOSTED ANYWHERE~~~~~~~~~~~~~~ http://votexegm.users.btopenworld.com/coverletter.htm letter that explains the reasoning behind this petition--------------------------------------------------------------------Call for an Emergency General Meeting of the ME Association'The current regime... appears to show no compassion norinterest in the community the MEA is supposed to be for.The MEA in its present form is an insult to its founders and earlypresidents - including people such as Dr Melvin Ramsay, Dr BettyDowsett.I believe it should have a good look at itself, and either change orfold.'Dr. Anne Macintyre, 6 May 2003'...it has become clear to me that the MEA no longer adheres tothe ideals and principles of a democratic organisation. I believe thatthe new MEA does not represent the majority views of the MEsufferers.. 'Dr. Abhijit Chaudhuri, letter of resignation from SMAP, 15 May2003.``````````````````````````Dear ME Association member,There have been increasing concerns voiced in the last fewmonths at the direction the ME Association has been taking.These concerns have included the psychologisation of ME andthe direction that the research strategy was taking - announcedin the winter edition of Research and Scientific Bulletin, andrevealed in the online questionnaire survey which asked aboutChronic Fatigue and not ME or even CFS. These concerns haveincreased recently with the resignation of 3 members of theBoard of Trustees, possibly over miss-management. Adding tothis is the manner in which the ME Association have dealt withthese resignations (in keeping them hidden from themembership), and the way in which they have dealt with publiccriticisms. The situation has become increasingly urgent with afinancial crisis now threatening the very existence of the MEAssociation. Urgent questions have also been raised, and notsatisfactorily answered, over the security of the RamsayResearch Fund.Far from addressing the concerns of its membership, the MEAssociation have been dismissive of them and has attempted tohide the truth from them. They have fired Dr. Shepherd for goingpublic with his concerns. (This action has led to the resignationof Dr.'s Abhijit Chaudhuri, Dr Nigel Speight and Professor MinaBehan from the Scientific and Medical Advisory Panel inprotest). They have also hired solicitors to threaten Dr. Shepherdand various websites for hosting his letters. These actions onlyconfirm what Dr. Anne Macintyre had earlier termed the'increasingly autocratic manner of administration.' The alienationof the membership seems to increase daily, and recentcomments by the Research Manager, including 'The MEA knowsthere are ME patients who are radically opposed to anysuggestion that ME is 'all in the mind'. The ME Association holdsno opinion on this..' , have caused outrage.The only option left to the membership in trying to get satisfactoryanswers to questions, and reforming the ME Association, is tocall and Emergency General Meeting. To this end this petitionhas been set up to be circulated and which needs to be signedby at least 5% of the membership. It is hoped that this EGM willhelp set the ME Association back on track as an organisationthat truly represents patients with ME.~~~~~~~~~~~~~~~~


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