Change all the labels you want, those who want to misuse the terms will continue doing so. Those who promote the idea we have a dysfunctional belief system will say ME is just psychosomatic no matter what we call it - or what the World Health Organization calls it. They have been doing that for decades despite clear evidence, don't expect that to change. Its only easier because of the word "fatigue" in CFS definitions - they will spin any of it as psychosomatic. Fibromyalgia is claimed to be psychosomatic; Multiple Chemical Sensitivity, Irritable Bowel Syndrome, anything that is not generally believed by nearly all doctors is physical is being claimed as psychosomatic. If there is no "known" physical cause, they "reason", then it has to be psychosomatic. The other possibilities are never discussed by them. The hypothesis is essentially an old Freudian one revamped with modern bells and whistles - "cognitive" is one of the new buzzwords.
Governments listen to these "experts" too. So don't expect any lobbying over names to be received very well.
We can change the name twenty times or universally adopt ME instead, and this will not change. There are only two ways to deal with this problem - thoroughly debunk the Dysfunctional Belief Model (DBM) and its parent diagnoses Conversion Disorder and Hysteria; or prove another mechanism or cause. The latter also gives us opportunities to research treatments or cures at the same time.
There is one sense in which a widespread adoption of ME would be better than the use of CFS: it would be a symbolic victory. It is hard to ascertain just what impact that would have, but it could still be important.
What about those researching biomedical CFS? Fukuda in 1994 (or soon after, it was an interview I vaguely recall reading) wanted to subgroup CFS. It was never intended to be a universal catch-all diagnosis according to him - it was simply to cast a wide enough net so that we could then identify subgroups and research those. The initial group that coined the term CFS on the other hand clearly wanted to reject an ME diagnosis - they ignored two expert opinions. This is a fact, but it is still unclear as to why it was - the current explanations could all be right but are unprovable with current information.
Careful subgrouping solves all the research problems put forward by ME advocates, and by adding similar groups and increasing the potential patient group size it is possibly easier to get funding. The problem is first, that subgrouping is not happening much; and second that when it happens it tends to be modified and unvalidated diagnostic criteria that are used, like in the PACE trial which used a modified version of the London criteria for ME.
Subgrouping may well lead to a very specific division of CFS and ME. This does not have to come from an ME biomarker either - any group of CFS patients that is split off using a biomarker creates a distinction.
What we need to discredit is the idea that subgrouping is optional. Very strict definitions of ME are probably fine (though its very likely subgroups exist within even strict definitions) but broad definitions of CFS like the Oxford definition are problematic. The proponents of the Oxford definition avoid studies into subgroups despite the fact that this is the only way for them to demonstrate the validity of the Oxford definition. If they can show that all subgroups are essentially the same no matter how we are studying them (and I think that is probably impossible for them to do) then they have validated the Oxford definition.
The PACE study made a half-hearted attempt to do this. They did use their modified ME criteria, and got more-or-less the same pathetic results they did for Oxford defined CFS. A strong study would have taken blood samples, created a detailed patient database, and been able to re-analyse the data using any criteria. So post-study analysis could go back and rework the data for Ramsay defined ME patient for example. They failed to do this, thereby missing a huge opportunity.
These days there are many leading biomarkers that biomedical ME and CFS researchers are interested in. Every patient in a really good study would be tested for every one of them, and the study results could then be analyzed subgroup by subgroup. This is not happening. Some of these biomarkers are very new. Funding is also a huge part of the problem, but I think recognition of the opportunity is also lacking. The recent move toward establishing biobanks is a step in the right direction but what we need is going to keep changing as the science advances.
Why is this relevant to ME? If ME is two or three different but similar diseases, then by ignoring subgroups we risk a problem that many ME advocates are worried about in CFS research. A non-homogeneous study cohort will confuse the data and they still may not get anywhere.
The only real way to avoid this is to only study epidemics, and each epidemic cohort should not be mixed with cohorts from other epidemics. This could have been done decades ago - now it would be very hard to do. If we get new epidemics that opportunity will arise again though.
The whole ME versus CFS label debate is mostly a distraction. It would improve community and government understanding if we got rid of any label that includes the word "fatigue", and that might have a follow-on effect on funding and abuse of patients, but I can't be sure about that. If we change the labels then those pushing for psychogenic explanations will just change their definitions. It cannot be fought that way. Indeed they love new labels. Just look at the forthcoming Diagnostic and Statistical Manual of Mental Disorders-V (DSM-V) and their fascination with the word "functional". "Functional" is the psychiatric code for crazy.
We need larger, better funded, multicenter studies that can do different kinds of analyses and subgroup patients properly. We are now seeing the formation of research networks that connect research in many countries. We are seeing the rise of systems biology that will cluster biomarkers into subgroups for study. These are all good.
Blog entry posted by alex3619, May 11, 2012.
About the Author
I am a long term ME patient with many complications. While I have pushed research advocacy since 1993, I became political around 2009. My current project is a book called "Embracing Uncertainty". Uncertainty in medical science seems anathema to too many doctors. "I do not know" is something more doctors should be honest about.