The term ‘CFS’ (denoting Chronic Fatigue Syndrome) is a problem for various reasons. However, current attempts to completely separate it from ME in the medical and lay lexicon are premature, because:
1. Most important biomedical research on ME has actually used ‘CFS’ criteria. The International Consensus Criteria demonstrates this thoroughly. Clearly there are times when the term ‘CFS’ needs to be understood as synonymous with ME.
2. The World Health Organisation’s ICD-10 has CFS as synonymous with ME in the neurological chapter at G93.3. Clearly there are times when the term ‘CFS’ IS synonymous with ME.
3. Psychiatrists and others promoting psychogenic explanations for ME benefit from the insistence that CFS is not ME per se. It allows them to (incorrectly) conflate Chronic Fatigue Syndrome with Chronic Fatigue - a perennial problem/fallacy in the research literature! With ME out of the picture as far as CFS is concerned - the conflation with CF can become more entrenched. This also allows them to conflate CFS (even though it may denote an ME patient) with neurasthenia, something psychiatrists promoting psychogenic explanations for ME have been attempting to do for years, and was prevented from doing so by the actions of advocates in the early 2000’s, when psychiatrists claimed (incorrectly) in official forums that Chronic Fatigue Syndrome was classified in the mental disorder chapter at F48 (with neurasthenia) as well as at G93.3. It should also be noted that certain psychiatrists treat ME as if it were merely a belief system by patients and/or an archaic historical diagnosis. In addition, Peter White has claimed that PACE was not studying ME or ’CFS/ME’, indicating the psychiatrists are attempting to separate ME from CFS - but for their own reasons as above. By unilaterally insisting ME and CFS are NEVER synonymous, advocates facilitate the painting of ME out of the picture by psychiatrists - meaning patients will be given CFS diagnoses to be conflated, by doctors, with Chronic Fatigue, a different illness entity altogether.
4. The Canadian Consensus Criteria (Carruthers et al, 2003) are peer reviewed in their own right, validated in published studies (by Leonard Jason) and operationalised (used in published studies) so currently the most ‘progressive’ of the ME criteria (in a research context) to highlight the inadequacies of Fukuda, Reeves, and Oxford Criteria. To insist they must not be used, or that findings from them must be discarded because of the term ‘ME/CFS’, is cutting off the community’s nose to spite its face, in effect.
5. People with ME get given a diagnosis of ‘CFS’ by doctors, in the UK, US and elsewhere, whether they like it or not. Insisting the two are separate in the minds of the media will not stop doctors from using that diagnosis. It means people with actual ME will be treated more often as if they have CFS, as being synonymous with Chronic Fatigue! The connection in people’s minds will become more entrenched (currently advocates can point out that is a discrepancy). Patients will still not get a ME diagnosis in the National Health Service, for example, and even in the US, the evidence suggests (bar claims that patients have been able to demand an ME diagnosis there) that the vast majority of evidence suggests people get diagnosed as ‘CFS’.
6. By keeping the two together under the WHO ICD-10 rubric FOR THE TIME BEING, we ironically allow some breathing space for patients given a CFS diagnosis when they should have an ME diagnosis, while people like Carruthers etc. can progress the science (for example the discusssion and refinement of ICC ME and its relation to the CCC), and for work by Judy Mikovits etc. to continue, and for advocates (including supporters of the community) to press the point about the instabilities and confusions and problems inherent in the various CFS criteria such as Oxford, Fukuda (with the Reeves 2003 refinement), Reeves 2005, and even the use of the London criteria in PACE, as well as how research cohorts differ from clinic attendees.
7. With all the above happening, advocates will sometimes find themselves needing to use the term ‘ME/CFS’ and even ‘CFS’ to denote ME in order to make sense in their arguments. To be repressed from doing so will render many of us ‘paralysed’ or ’tongue-tied’ - unable to construct a coherent argument in our advocacy, either to each other, or to others.
It must be emphasised this is not an argument to ‘keep’ CFS synonymous with ME per se. No-one who understands the organic nature of Myalgic Encephalomyelitis wants to ‘keep’ the name Chronic Fatigue Syndrome. Many people (myself included) use the term ME on its own whenever possible. But unilateral repression of the use of the term CFS by the ME community at this time can lead it into bigger problems.
[I hope that Ange and readers, here, will appreciate that my post is not with any negative hostility to her conclusions but as a reaction to the points that she quite properly raises for consideration. I am grateful to her for providing the propositions and an intelligent forum in which to discuss them.]
ReplyDeleteI am pleased to see that, after her, "7 Reasons ME advocates cannot unilaterally discard the term ‘CFS’ (or ‘ME/CFS’) just yet!", Angela Kennedy says that she is not arguing in favour of keeping CFS or CFS/ME as synonymous with M.E.
There are two things, in particular, that concern me about the time before separation that she (and others) would approve: (1) There probably never will be a time when the individuals/institutions she names, elect or are persuaded not to prefer CFS or use CFS/ME after 25 years of clinging to it, especially if they have a career interest or profit motive in doing so. (2) Enduring CFS or CFS/ME when it is scientifically, logically and morally untenable because opposing it may "lead us into bigger problems" and only using, "the term ME on its own whenever possible," is tantamount to tolerating institutionalised bullying.
My view is that, it should never have been necessary, is long overdue and until we separate M.E. from CFS, we shall make no progress no only for M.E. sufferers but anyone else caught up in this indiscriminate bundle.
Best wishes
Dr John H Greensmith
ME Community Trust. org
Thanks John for your post and nice to hear from you.
ReplyDeleteMy concerns are actually around NOT tolerating the linguistic sleights of hand this community has witnessed for many years, but at the same time it is vital we do not back ourselves into a corner, especially when trying to use 'CFS' and its history in an explanatory context, in order to explain how irrationally this community has been and continues to be treated by doctors, researchers, the government, the media etc.
At present, the attempted repression of advocates from taking part in initiatives like supporting the Canadian Criteria, and talking about 'ME/CFS' or even 'CFS' in certain contexts, is itself a form of bullying, because it is leaving people tongue-tied, and without any tools to use to progress.
The issue, as I would hope my blog post showed, is actually pretty complex. I do disagree with you that we cannot endure CFS or ME/CFS at this time. I think we still have to sometimes use the terms until the science is more progressed, in order to fight our own corner as a community (whether patient or supporter) - and actually get that science to progress! Always an uphill battle.
Yes- I'm one of those uppity types that think we have a right to tell researchers where they are going wrong! Of course, both you and I are academic researchers in our own right - but that's not really relevant. If advocates are correct in the concerns they raise to researchers, then advocates are correct, whoever they are. I'm not one for irrational deference I'm afraid :D