I must declare an interest as Dr Myhill's patient who needs her evidence to help me get recognition at benefits assessment. I have been badly misassessed twice now and am still in the process of appealing the second having overturned the first with Dr Myhill's help. She is the only doctor in the UK I have found willing to help me like this, so its important to me that her constructive intent is understood by others in the ME community.
One doctor told me "that doesnt happen" another "I dont know you well enough". Dr Myhill was upfront and practical from the outset and helped me out in a difficult time. I had previously been homeless with raging ME CFIDS with recurring viruses undiagnosed for ten years. I have had the illness 30 years now.
I have consulted with Dr Myhill since 2003 and have always taken it that Dr Myhill is foremost a clinician and deals kindly with the people who turn up on her doorstep asking for help and as best she can. So she does not necessarily express herself following a research paradigm when addressing the broad church of her allies.
Conditions like Lymes, peripheral hypothyroidism which are often a serious problem causing CFS are sometimes diagnosed as ME/CFS because of the problem we have with criteria. Likewise organophosphate exposure which is of particular significance to the Countess of Mar since that was the source of her CFS. These are conditions which Dr Myhill deals with and can be helped with progressive therapies, but they are not really ME CFIDS proper, if only we knew what that was.
So I think her statement does make sense from a perspective of a broad selection of subtypes and the clinical approach she follows, within a busy surgery.
If you read what she wrote its obvious that this is what she means.
2. Such abused patients have organised themselves into support groups. These groups have lobbied valiantly but have failed to achieve proper recognition for their disease. These groups include: Gulf War Veterans, carbon mon-oxide poisoned PWME, Sheep Dip flu PWME, Aerotoxic pilots, 9/11 fireman, survivors of silicone PWME, sick building syndrome, mercury amalgam poisoned PWME, Lyme disease and co-infections and many others at home and abroad.
And when she says the BSEM and others spearhead helpful techniques I believe she is referring to things which help these kinds of CFS, which is credible, bearing in mind what we all know, that ME CFIDS, whatever it is, has no cure at this time.
For example that vitD is helpful has recently been taken on by mainstream NHS GPs, which seems a fairly credible kind of development and Dr Jenny Goodman is saying that the BSEM have been recommending this for a while now, which seems to be a valid recommendation.
https://www.theguardian.com/society...beneficial-its-a-necessity?CMP=share_btn_link
So I think much depends on interpretation and to construe that the good doctor's statements are nonsense may be a misunderstanding of what I perceive to be the genuinely good intentions which created them.