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Musical Labels

Blog entry posted by alex3619, May 11, 2012.

Part One

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.


Subgrouping

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.
alex3619

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.
  1. Don Quichotte
    I personally " experienced " the very dysfunctional way in which (some) neurologists use functional.
    (so am possibly emotional about it, as I don't fancy people risking my life for no good reason).

    It is meant to be a deceptive term, but I think it eventually managed to confuse even them.

    It is true that there are some psychiatrists who are happy to adopt this diagnosis as a psychiatric one, but many don't and didn't for many years.

    There has been a long debate about it, since the time of Eliot Slater (it was then called " hysteria" ).

    And those patients were really left in no-man's land (they had severe and even disabling neurological symptoms, but they were not physically ill, nor did they have a psychiatric condition).

    I think it was indeed Wesley that found a " mine of gold" in those neglected patients, and as opposed to other psychiatrists was ready to adopt them.

    I believe that his (quite unexpected) success with a very poor and badly constructed study led to his enthusiasm to continue this. He then had quite a few followers who were glad to share his success.

    With time (and better studies) it became obvious that those patients have no psychiatric symptoms, but this minor issue didn't bother this group to continue with what they did.


    This diagnosis is a diagnosis of exclusion in disguise.

    It is made by neurologists (because the main criteria are that the patient will have neurological symptoms and that it will not fit with anything the neurologist knows), but it is a psychiatric diagnosis (even though it has no psychiatric symptoms).

    This is a sort of mad hatter's tea party logic, but it seems to work surprisingly well for a significant number of seemingly intelligent people.
  2. alex3619
    Hi Don Quichotte, I am aware of several meanings in the medical literature of "functional". There is a push in psychosomatic circles, including from Wessely, to use "functional" as a description for presumed psychiatric conditions. This has been going on for a long time. He wrote a paper on it recently.

    I am currently researching this and may have more to say next year. One of the issues I will be raising is the deliberate use of words that have multiple meanings, it is far too easy to change the implication of things in doing this. A sentence like "CFS is a psychiatric disorder." can be "true", false or a nonsense question depending on what is meant. Its a highly deceptive statement. By using "functional" the statements about psychosomatic presumptions can appear to be related to neurological issues for example.

    Neurologists vascilate on their use of the term from my reading. The word is too ambiguous.

    When I use the word "functional" in normal usage, I mean pertaining to operation, how it works: that is, how it functions. So saying something is a functional problem, from my normal usage, is saying its not working right. Such a statement does not directly imply a structural problem. Indeed the system in question could be structurally intact and still not working right if it is not being properly regulated or is being influenced by a pathogen using mimicry, for example. This just means the real problem is elsewhere.

    I still think that CFS is the most over-used and deceptive term involved in this, especially if its confused with chronic fatigue.

    I do agree that logic and reason rarely reach people who have made an emotional committment. Its not them you have to convince - you probably can't anyway. Its everyone they are influencing who have not yet made an emotional committment who have to be reached. These people can still be reached through reason.

    Bye, Alex
  3. Don Quichotte
    The point is that those decisions (like many other human decisions) are not driven by logic or science but by emotions and irrational behavior. Therefore I am doubtful that logic and science will fully correct them.
    Merry likes this.
  4. Don Quichotte
    "Functional" is the psychiatric code for crazy.

    No, it is the neurological code for- I don't know, I can't admit that I don't know, because if I don't know what is wrong with half of my patients what kind of a physician am I? So, I better find a place to TURF them (a term from the house of God), and psychiatry seems an ideal place. (It's really great that those ***are ready to have in their manual a diagnosis that only based on my inability to know what the heck is wrong with my patient)

    This is the way it is defined by the experts in the field- "These are genuine (neurological) symptoms which relate to a problem in nervous system functioning rather than disease. "

    Ha?????

    In fact, by the same logic Diabetes causes genuine symptoms which are related to problems in the functioning of the pancreas, not a real disease.

    So, should it also be included in the DSM-5?