Diagnostic criteria for M.E. CFS and variants (was Re: [worcsme-network] M.E. Community Trust.org)

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Hi ,

The Government is advised by the Medical establishment. In the UK, since

2007, governments of all political persuasions have accepted the NICE

Guidelines. These are the only " official " ones issued to doctors. But

far from clarifying the matter, they starkly illustrate the problems

because these guidelines refer to M.E. (Myalgic

Encephalomyelitis/Myalgic Encephalopathy) AND CFS, singly and combined.

I do not think one can deduce from this a universally agreed outcome

that any government wants.

You probably won't ask the same question, you asked me, of people who

are far more influential in shaping policy, researchers, such as

Wessely, Crawley, Newton etc. and Organisations purporting to represent

M.E. sufferers (ME Association, AfME etc.) or their opposite numbers in

other parts of the world, such as , Klimas, Komaroff etc. and their

respective organisations for CFS, PVFS, CFIDS etc. - who have different

medical establishments and political systems - but, if you did, you

would undoubtedly get a variety of answers (or, in some cases, be ignored).

The conundrum is that Chronic Fatigue Syndrome (CFS) cannot be used in

the singular, yet researchers of reputation and influence still refer to

it as " This illness ... " No one ever answers why, if M.E. and CFS are

" exactly " the same, they do not, for clarity, drop M.E. altogether. Nor,

if they persist in retaining M.E. do they define what they mean by it.

Perhaps we should insist on, " when I say CFS, I mean version x, " or " By

M.E., I mean version y. " Otherwise, in plain layman's terms, you are not

comparing like with like and you may be trying to apply conclusions from

research to people who were not in the study, possibly with harmful

consequences. These are the people to whom your questions should be

directed, .

But I will give you an answer. Since I assert that M.E. can be diagnosed

without inclusion of " fatigue " and its bookends " chronic " and

" syndrome " , I use as a starting point, M.E. as defined by the World

Health Organisation ICD-10 G93.3 and the International Consensus

Criteria (Incidentally, I wonder if anyone can explain to me why those

who favour the Canadian Consensus Criteria would not now prefer this

version?). Notice I say starting point because I believe that, even with

the greatest care, there is likely to be some unwanted weakness or

contamination in experimental design and subject selection and we should

regard no authority as infallible or variable as sacrosanct - not even

the name Myalgic Encephalomyelitis itself - but seek the best yet in our

quest for a solution. Even from this starting point, our subject sample

has rid itself of the contamination of CFS so, for example, one could

re-run studies, which used a variety of CFS and CFS/ME criteria and

design new ones with this purer subject sample, obtain quite different

results and draw quite different conclusions for practice. I see no

better option than this offered by anyone else and only the flawed CFS

and contaminated variants, which have impeded progress, not only for

M.E. sufferers but all patients caught up in this indiscriminate bundle

and maintained people ill for the 25 years since it was created.

We must be prepared to continually refine our criteria based on the

results we obtain. As in all areas of science you have to carry not only

your peers with you but gain general approval based on the best

scientific evidence of the time.

I should make the point, , that having asked this question of me,

you (and this applies to everyone else too) should have an answer

yourself. Whatever it is, you should know what you believe. Even if it

is, " I agree with what so-and-so says, " you ought to be confident that

they have a good scientific basis for their view, which you are endorsing.

Incidentally, whether pursues it or not, I might ask these

questions myself of the people I mentioned above and I invite anyone who

would like to share the workload - possibly with a view to publishing

the outcome as a paper - to contact me.

Best wishes

drjohngreensmith@...

Dr H Greensmith

M.E. Community Trust.org