A recent item circulated by Greg Crowhurst under the title There is a place beyond anger published here
on ME agenda and also on the Co-Cure email list, and several other ME message boards and forums, included a contentious reference to the regional ME support group – M.E. Support-Norfolk.
I have offered John Sayer, Chair of M.E. Support-Norfolk right of reply on ME agenda and Mr Sayer’s comments can be read below:
Mr Crowhurst had written:
3. when I wrote to my local group, ME Support Norfolk, and asked them to tell me exactly what they are doing for the severely affected and they responded:
“This question cannot be answered directly, since “the severely affected” is an abstract concept.”
Right of reply from John Sayer
There is a place beyond anger alright, one where people put selected out-of-context quotes like this on the internet!
Greg did not write to “M.E. Support-Norfolk” with his question, but to one of our committee members. The above quoted answer to that question came from me, which I then had to elaborate in a follow-up e-mail, since Greg, in his response to me, had clearly misunderstood what I meant: “Yes, I realise that by “the severely affected” you mean “severe M.E. sufferers”. I wasn’t trying to be facetious (if that’s what you thought), only pointing out that your question was too abstract to be answered in a direct way: we do what we can for individuals, with their individual needs.
“As for the general picture, we follow our constitution’s Aims and Objectives, which are ‘to provide information and support to people with M.E., their carers, families and friends; to raise awareness of M.E. locally within the media, health care organisations and the general public; and to campaign for more recognition, research and better care and benefits for people with M.E.’
“I can’t go into many specifics here because I can’t remember them all and I would need to go through all our committee minutes, correspondence and back issues of MEMO (our newsletter) to compile a comprehensive list.
“Off the top of my head I can refer to the talks by Dr Carruthers and Prof Hooper we sponsored in 2005, along with the DVDs produced from those talks and distributed to health centres and surgeries throughout Norfolk; the various speakers (eg Betty Dowsett, Jane Colby, Nigel Speight) we have had following our AGMs over the years; leafletting campaigns we have conducted, usually in M.E. Awareness Week; putting our literature in hospitals and surgeries; informing the county’s MPs; lobbying various departments within the health service, including the PCT; issuing press releases and writing to the media; and challenging the DWP, NICE etc.
“I don’t know that we’ve done anything specifically for the severely affected as such, any more than we’ve done anything specifically for the mildly or moderately affected. We just do what we can, when we can, on behalf of M.E. sufferers generally. Of course, in day-to-day individual practical terms, that means for our members, since we are obviously not in contact with non-members so don’t know what their specific needs are.
“I was helpless, bedridden and almost praying for death in the first few months of becoming ill. Thankfully, I improved gradually for a year or so (and honestly believed at the time that I was ‘recovering’ and would soon be back teaching). However, since first reaching a peak back in 1995 I have slowly but steadily declined and live with the realistic possibility that I will regress back to that earlier hell. If things continue as they are, it is only a matter of time before I am unable to continue producing MEMO, serve on our committee or do anything at all on behalf of myself or other sufferers. In the meantime I (as do the other members of the MES-N committee and individual members of our group who are able and motivated enough) keep at it, and it consumes the major part of my life.
Best wishes to Linda, with whom I fully empathise.”
Since Greg’s response to that e-mail was, “Thanks John. Very best wishes,” I was absolutely shocked to read his “ME -there is a place beyond anger” posting, especially when he lumps together “MES-N”, the psychiatric lobby and AfME: “What hope is there of getting proper medical tests and treatment or validation for this severely disabling, multi-dysfunctional, neurological disease, when these are the attitudes and views of the people who represent ME to the world ?”
Greg should hang his head in shame. (Or at least join one of the Norfolk support groups, if he thinks he can do any better).
Chair, M.E. Support-Norfolk