Tuesday, 10 January 2012

7 Reasons ME advocates cannot unilaterally discard the term ‘CFS’ (or ‘ME/CFS’) just yet!

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.

Sunday, 8 January 2012

Gerwyn's concerns about the Lipkin Study

Gerwyn - ME advocate - has written below some key concerns about the Lipkin study. I think these are very interesting points which bear consideration, so am reproducing below:

"We all know that  a  mrv is only detectable by for a short time in the blood following innoculation thereafter it is readily found by PCR in lymphoid tissue notably spleen lymph nodes tonsilluar tissue lung tissue and intestines. We also know that for complex reasons the antibody response fades and also becomes undetectable.This is typical of the behaviour of many other gammaretroviruses. They infect B cells in the lymph nodes first and then spread to other secondary lymphoid tissues. They infect a class of B cell which ultimately resides in the peritoneal cavity..They also infect recycling CD20 B cells because those cells pass through the spleen and a very low percentage of them will become infected.The trouble is that these cells quite literally burst after a few  days. Memory B cells are also a target for infection but after a short time in the blood they home in on lymphoid tissues again. The basic message is that  multiple samples at multiple time points need to be taken from an infected patient to have any sort of chance of detecting a MRV in  blood samples.The lipkin study involves  samples taken from a patient on the same day.

 We also know that the people have been"trying" to find a MRV in people with ME have set their tests to dectect a synthetic clone which does not exist in nature.Obviously they have no chance of detecting  a real MRV in infected patients.They are going to be using this method again in the Lipkin study. Lipkin knows that XMRV does not exist in nature so 75% of the researchers will be using tests which have no chance of working.This will leave Dr Mikovits and Dr Ruscetti attempting to  detect a mrv in blood samples taken from chronically tired people on the same day!!.They are both brilliant scientists but contrary to their detractors views there is no evidence that they have magical powers!!Even if  by some incredible feat of ingenuity they are able to detect some virus in some people the difference between the number of ME positives and the numbers of CONTACT controlls is certain to be obscured. Either way we lose. Excellent design for governments and corporate interests but a dire design for people with ME."

APK-Papers Yahoo site

My complaint to the Lancet regarding the PACE trial (and related correspondence) is viewable now in full on the following Yahoo group:


This includes full complaint to Charles Warlow, and recent correspondence with Richard Turner.

I keep a number of responses, letters, short articles etc. I have written on that group for public access purposes, as well as records of key email correspondence such as the complaint to the Lancet, correspondence relating to the defamation I suffered on Wikipedia, etc.

Ange's blog.

I've started this blog as a place to share stuff, basically.

Twitter is too short. Facebook is too limited in what one can put up or write.

This is NOT a place for me to pour out my inner most thoughts, my take on every little thing, though I am still likely to write small articles here and there sometimes.

People who know me will know the things I am concerned about. People who don't and find themselves interested in one or more issues will come here and hopefully find something useful.

I'm pre-moderating comments - the reason for this is likely to become clear in time.

Not much else to say really! Yet.