The following letter is from Campaigning for Research into ME (RiME), to the NHS Services Inquiry. As it has been the subject of a bulk mailing, I consider it to be in the public domain, and thus there is no copyright infringement.
What concerns me, deeply, is that this letter refers to the 1969 WHO definition of ME as neurological but, as I pointed out here that definition is no longer valid, and hasn’t been for years. Why are people so lazy that they can’t take two minutes to verify a reference?
Dear Dr Turner,
The document ‘APPG Inquiry on NHS services provision for people with ME, Draft, Terms of Reference’ was distributed at the APPG meeting April 1 2009. It is not signed but since it begins ‘APPG Inquiry … ‘ it would seem reasonable to assume that you are responsible for its contents as Chair of APPG on ME. The questions below, accordingly, are to you. Time is short, so I will confine my comments to Para. 2:
…. M.E. is classified as a neurological illness under the World Health Organisation classification (ICD G93.3). However the NHS largely uses the term Chronic Fatigue Syndrome instead of M.E. or else adopts the hybrid CFS/M/E. in diagnosing and treating patients. Terminology is a contentious matter. It has some bearing on this inquiry because to use only the precise WHO classification of M.E. above will impede access to information from the NHS that is crucial to the success of this inquiry…..
It is poorly written and difficult to understand. Let’s break it down sentence by sentence:
1. M.E. is classified as a neurological illness under the World Health Organisation classification (ICD G93.3).
Correct. We understand that.
2. However the NHS largely uses the term Chronic Fatigue Syndrome instead of M.E. or else adopts the hybrid CFS/M/E. in diagnosing and treating patients.
ToR 2 trace the 13 CNCCs and 50 LMTs back to the CMO Report 2002. The CMO Report, of course, was never about G93.3 ME (note that a number of ME organisations wouldn’t sign up to it eg the 25% Group wouldn’t sign primarily because it didn’t recognise G93.3). Instead it used a composite term ‘Chronic Fatigue Syndrome/Myalgic Encephalomyelitis’ (‘CFS/ME’). ‘CFS/ME’ is an artificial construct with no diagnostic or research criteria and no scientific precision. What the Government did was to fudge G93.3 ME with a host of other illnesses that would fit a loose definition of CFS; ME, consequently, gets skewed and diluted (1).
So, can you tell us please: Since the APPG on ME recognises G93.3 why is it leading an inquiry on something else?
If the APPG had integrity, should it not (1) distance itself from any services inquiry (2) be critical of the ‘CFS/ME’ Services (3) fight for biomedical ME Research?
3. Terminology is a contentious matter.
It shouldn’t be, unduly. That is, if the powers to be adhered to the ICD G93.3 classification of ME, and the illness described by the Canadian Criteria – a neuro-immune-endocrine-vascular illness.
4. It has some bearing on this inquiry because to use only the precise WHO classification of M.E. above will impede access to information from the NHS that is crucial to the success of this inquiry.
This fourth (final) sentence is very hard to make sense of. It seems to contain a number of confused and conflated points:
It has some bearing on this inquiry
In other words, it is secondary to the inquiry?
Trying to understand the whole paragraph: The inquiry (about ‘CFS/ME’) is the all important thing and mere matters of classification and nomenclature must not be allowed to get in its way?
Again, if the APPG had integrity should it print such a statement? Should it not fight to keep ME separate from loosely defined CFS?
the success of this inquiry. Those words would seem to indicate (well, this is how it is being interpreted by some) that those involved in writing the document predict a successful outcome; that is, a report that concludes favorably on existent ‘CFS/ME’ services in England? I refer you to RiME’s response to ToR 1.
I ask that you answer each of the four questions (underlined) please.
Organisations are asked to submit suggestions re. surveys by May 5.
If the surveys use artificial constructs such as ‘CFS/ME’ then it will render the Inquiry invalid (see above). Moreover, will the Inquiry team approach providers who supply Chronic Fatigue Services; here, the ME disappears altogether. For example, will you approach the Chronic Fatigue Clinics in Kent? Do they not exclude persons with neurological illness via Section 5.4 of their Admittance Criteria?
If you were to, let’s be clear as to what you would be doing: You as Chair of the APPG on ME which recognises G93.3 ME, would be investigating services which exclude patients with neurological illness, yes?
Could you please also answer this fifth question.
Yours Sincerely, Paul Davis RiME firstname.lastname@example.org www.rime.me.uk
Of course, much of that depends of the WHO saying ME is a neurological illness, which they no longer do, and it pisses me off that people who represent the interests of the ME community can be so sloppy.
I have, of course, emailed RiME, as under:-
A document headed:-
Campaigning for Research into ME (RiME)
NHS Services Inquiry
RiME’s Comments re. Surveys for Services Inquiry was sent to Dr Turner today 29/4/09 (below).
has been forwarded to me today. I am very concerned that the writer, in referring to WHO ICD G93.3, is unaware that this definition has drastically changed, at least as long ago as 2004, which is as far back as I’ve been able to trace the change (https://ronsrants.wordpress.com/2009/03/18/mecfs-the-who-what-has-gone-wrong/ ). It no longer lists ME as a neurological condition.
The same out-of-date definition was also, apparently, used in the abortive NICE judicial review**. None of this fills me with confidence. It seems that ICD G93.3 is repeatedly trotted out without anyone bothering to do what I did – simply check that the 1969 definition is still valid. Really, you know, that’s not good enough.
**The website http://www.nicemecourt.co.uk/ included the same incorrect reference in the item “Message from Kevin Short & Doug Fraser, (the Claiments)”. I emailed them, pointing this out (politely) and, overnight it was re-written without comment and without the WHO reference. I never did get a reply, though.
Ron Graves (ME for 24 years)
Will I, I wonder, get a reply to this one? If I do, you can be sure I’ll post it here. Watch this space…