Former ME Association Chair, Chris Ellis, writes to Chair, APPG on ME
Mr Ellis, who resigned as Chair and Trustee of the ME Association Board of Trustees in February 2004, wrote to Dr Des Turner, MP, a few weeks ago, after reading the Minutes of the December meeting of the All Party Parliamentary Group on ME.
Mr Ellis has kindly given permission for his letter to be published on ME agenda and Co-Cure mailing list and is to be commended for speaking out so passionately in support of those members of the ME community who struggle to attend these meetings and who represent the interests of those unable to participate.
Des Turner MP
APPG ON CFS/ME
House of Commons
08 February 2010
Dear Mr Turner
You are to be commended for your courage in taking the chair at any meeting concerning ME. Obviously you must have been aware previously that there is a sizeable bone of contention between certain factions of those people who are focused on progressing the interests of M.E. sufferers. That such a rift exists, reflects the wide variations in the severity of the condition (a variety mentioned by the Minister himself) and is a considerable factor behind such bitter disagreement.
From the minutes of the last APPG meeting it seems patently clear to me that you (and the Countess) do not acknowledge a similar act of courage to your own from ME sufferer Mr Paul Davis and some of his supporters given the severity of the condition encountered by these people. Merely attending the meeting is in itself an ordeal which prevents others with similar problems from playing any part in fighting their corner. Mr. Davis’s efforts are truly Herculean and the Chair, whatever the difficulties, must recognise this and, on all occasions, give respect, at least, to his views. Mr Davis and his supporters are fighting for their very lives and this cannot be said, with the best will in the world, in respect of the “professionals” who represent the large charities. Mr Davis does indeed carry the hopes of many sufferers of severe ME who, however, are effectively disenfranchised by the fact that government and the APPG meetings both operate from a far corner of the UK so that, given their debilitating illness, they find the time and distance to be problems which they are completely unable to endure. Let this never be forgotten.
Quite frankly, your treatment of Mr Davis was nothing less than appalling and revealed a complete lack of skill for anyone acting as Chair. You openly admit, as reported in the minutes, that AFME and MEA were the only groups consulted, a fact which needed to be brought to attention at the outset. Your “reason” for carrying out this act of impartiality being “because they are the only people who assist with the running of the Group” (APPG) is completely outrageous and does not bear thinking about. (I trust that this is not a usual Parliamentary practice). Given the widely known polarised views on M.E., this impartiality is a blatant slap in the face for Mr Davis and his supporters in RIME.
To the injury supplied to Mr Davis above you then had the audacity to add insult. Your recorded stab at Mr Davis “I know you feel that you represent MILLIONS of patients” was unacceptably contemptuous. (It is, however, pertinent to state what the Minister himself said, that the number of M.E. sufferers is not actually verifiable, which is a comment in itself about the progress made with M.E.). To cap it all, the minutes record that, in repost to a supporter of Mr Davis that “important points” had been made by Mr Davis and his colleagues, you retorted “I have yet to hear one.” Bias, Mr Chairman? You supply any synonym you like.
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Turning now to the APPG report itself, the hotly disputed subject of CBT and GET treatments receives a bias which is unacceptable to the RIME faction I would think The minutes themselves show that the Minister himself has some reservations when he says “concerns have been expressed about the acceptability, efficiency and safety of several treatments including CBT and GET”. The report finds that these objections “might relate to the fact that they are not being delivered by properly trained healthcare workers”. Indeed a plausible concern and yet the obvious possibility that they just do not work and are dangerous when applied to M.E. sufferers (as distinct from the CFS hotchpotch) is not expressed. (Could it possibly be that I might be able to use the Psychiatric terminology that some people are “in denial” about such a hypothesis?). I would like to have been better informed about the submissions behind the report’s words “in part due to the fixed attitudes about causation by some health professionals”.
I would like to think that a more sympathetic manner will prevail towards Mr Davis and RIME in the future. I do believe that it is quite possible to remove most of the rancour if one simple action is taken.
And now I must offer you MY OWN APOLOGIES for the vehemence of the above words addressed to yourself. As the father of a young woman who, in her early twenties, contracted ME, who has continued to suffer a variety of severe symptoms (chronic “fatigue” indeed) for around 15 or so years AND has had to bear the “yuppie flue” stigma and the outrageous statements made by certain so-called eminent psychiatrists in the early years, I ask for your forgiveness. Yours is not an easy job, indeed.
Let us rid ourselves of much of the disputation at APPG meetings; let us achieve a more unified approach by ME organizations; just one simple and, what is more, virtually costless manoeuvre might well do the trick. Let us take the SPECIFIC application of the psychiatric initiatives out of the SPECIFIC ME equation. Let us simply re–name the local area clinics and associated baggage, which have hitherto been designated to ME, and let the new name reflect a comprehensive application of psychiatric treatments to any number of appropriate medical conditions. Given that it must be assumed that the medical profession approve of the likes of CBT and GET and must also be satisfied of the cost effectiveness of the present setup, surely it cannot be that such treatments would not benefit the recovery in a wide variety of illnesses.
Once removed from the equation SPECIFICALLY currently applied to ME, the hotly disputed psychiatric contribution to the subject would no longer be pivotal in causing such havoc in the realms of ME politics. You and the APPG would have a far quieter life, the Minister would have a much smaller angry postbag, the medical establishment would not I feel be terribly aroused and the cost would be minimal. Any mileage in this?
C R ELLIS
RiME response to APPG on ME Legacy Paper
Minutes and Verbatim Transcript meeting of the APPG on ME held 2 December 2009