Why I think the new Myalgic Encephalomyelitis International Consensus Criteria are not much better.

I’m sorry I haven’t posted with my IGeneX results, yet. But right now I feel like talking about the new International Consensus Criteria for Myalgic Encephalomyelitis. And no, I’m not one of those people who tries to find something wrong with everything. I just wanted one thing, and I didn’t find it…

First, none of this will make sense if you don’t understand this fact: Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (M.E.) are two distinct entities. If you look to the right of my blog, you’ll find this, which I’ll repost:

CDC agrees that M.E. is not the same as CFS:
“Various terms are often used interchangeably with CFS. CFS is the preferred term because it has an internationally accepted case definition that is used in research and clinical settings.

The name chronic fatigue and immune dysfunction syndrome (CFIDS) was introduced soon after CFS was defined; there is no case definition for CFIDS, and the name implies an understanding about the pathophysiology of CFS that does not currently exist.

Chronic active Epstein-Barr virus (EBV) infection (chronic mononucleosis) was thought to be the cause of CFS during the 1980s, and this association is now known to be rare.

However, post-infection fatigue syndromes have been associated with EBV and other infectious agents. The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.” — Centers for Disease Control and Prevention (CDC), US

This brings us two points:

  1. CFS has an internationally accepted case definition. This definition is based upon the symptom of fatigue without a known cause. All other neuroimmune symptoms are secondary and non-essential for diagnosis. So, if you have unexplained fatigue with sore throat and lymph nodes, headache, and post-exertional exhaustion, while another person has unexplained fatigue with poor sleep and memory, with muscle and joint pain, you both have the same illness as far as “CFS” is concerned, despite fatigue being the only thing you have in common.
  2. Myalgic encephalomyelitis also has a distinct case definition, accompanied by neurologic and muscular signs. The best definition for M.E. is Ramsay’s definition of 1986, which describes the key feature being “muscle fatigability, whereby, even after a minor degree of physical effort, three, four or five days, or longer elapse before full muscle power is restored and constitutes the sheet anchor of diagnosis.” He goes on to write, “Without it, I would be unwilling to diagnose a patient as suffering from ME, but it is most important to stress the fact that cases of ME of mild or even moderate severity may have normal muscle power in a remission. In such cases, tests for muscle power should be repeated after exercise.” [A. Melvin Ramsay, M.A., M.D. Myalgic Encephalomyelitis and Postviral Fatigue States: The saga of Royal Free disease (London, 1st ed. 1986, 2nd ed. 1988).]

After several outbreaks of what was undoubtedly M.E., the CDC did a mediocre investigation (if you can call sending one person to collect a few blood samples then announcing “mass hysteria” an investigation) and invented this “new” syndrome of chronic fatigue. Over the past 30 years, it’s become a catch-all group for anyone suffering from fatigue for which no cause can be found, which includes anyone with undiagnosed cancer, hypothyroidism, depression, Lyme disease, myalgic encephalomyelitis, and various other physical and psychiatric disorders that have fatigue as a symptom. The only thing any of these people have in common, is that they are tired, and are very sick; some of them are dying due to misdiagnosis. In the most recent paper (which I’ll source a few paragraphs down), this is written:

“In a study of the Reeves empirical criteria [for CFS], Jason et al reported that 38% of patients diagnosed with Major Depressive Disorder were misclassified as having CFS and only 10% of patients identified as having CFS actually had ME.

Needless to say, it’s a very, very poor category to fall into when you’re sick and trying to cling to life. I’ll leave the conspiracy theories out of this, though nearly everyone has an opinion about how it came to happen that a deadly neuroimmune disease got classified as the same thing as a syndrome with “general unwellness and fatigue” as the main symptom. Ultimately, several “specialists” went into a room and decided upon the name of CFS for all the “new, unexplained” outbreaks (which they really did think was mass hysteria) even when knowing-virologists walked out, refusing to take part in classifying a viral-induced illness that was killing people as a “fatigue syndrome.” There’s much debate over if other pathogens can trigger M.E., but it usually has viral onset, and is contagious in the beginning stages. If you wish to know more, please see the links on the right of this blog.

Now, the real specialists we admire (no sarcasm there) have nearly succeeded in making a new, international definition for M.E…. You’d think I’d be happy (and I almost am), but they’ve completely left out the MAIN SYMPTOM, which is an abnormally delayed muscle recovery after doing trivial things.  The core symptom of M.E. is in the muscles. How is this new international definition any better, if this main symptom is not the focus?

If you ask me, people with chronic Lyme disease are still going to be misdiagnosed with this new definition, which still focuses on “physical and/or cognitive fatiguability in response to exertion.” It includes “neuroimmune exhaustion,” now, but did you know that Lyme disease also causes an immune system activation 24-48 hours after activity (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses, Joseph J. Burrascano Jr, MD. September 2008.)? I’d imagine other chronic infections can do this, too. In the new paper, they source the recent CFS study about spinal proteins which claims to distinguish CFS patients from “Post-treatment Lyme disease,” but the fact that they are even mentioning the phrase “Post-treatment Lyme disease” is horrifying, as such a category doesn’t exist: Ongoing infection (which has been proven) is the cause of so-called “post treatment” Lyme symptoms, and to not acknowledge this shows a huge misunderstanding on their part, which will be greatly detrimental to their efforts. You cannot afford to not understand something which shares so many symptoms with the disease you are studying, and also, how can you possibly quote a study that uses the same flawed definition of CFS you’re trying to protest, as a support for your paper?! That is a circular argument, and just.. completely unsound!!

Thanks to a link at THE NICEGUIDELINES BLOG, I’ve been able to view the full paper that was ultimately published in the Journal of Internal Medicine. I recommend you visit there and read the paper for yourself, but here is the proposed new definition, via photo:

All of that said, I really do think this new definition is a huge step in the right direction. We’ve all been begging for a new definition for years. I’m a big fan of the Nightingale definition, but it’s not commonly used. I believe the Canadian Consensus Criteria were developed in 2002? It’s been almost a decade since we’ve seen any new definition, and if it had to be anything, I’d surely choose this one over the mockery of “CFS/ME” definitions that exist in other countries, and “CFS” definition we have here in the United States. It will help eliminate some of the other misdiagnoses, especially of psychiatric origin. If THIS becomes the new “CFS,” it will make sense to use terms like “CFS/ME” and “ME/CFS,” which, as of right now, as I’ve said many times before, make as much sense as saying “lung cancer/chronic cough” or “AIDS/chronic sinus infections.” In other words, none at all, and it’s extremely offensive to those who have it.

And at least the definition does focus more on the rapid loss of energy that occurs, physically, which does include the muscles… I just highly, highly dislike the “and/or cognitive fatiguability” part, which means you can still be included even if your muscles aren’t the part that’s weakened. Your brain isn’t going to be paralyzed; your muscles can and will, with continued use, if you have M.E., and that’s a major part of the diagnosis that needs to be considered, as Dr. Ramsay said back in 1986 before he died. I have a family member who becomes extremely mentally fatigued as the evening wears on, and would qualify as having M.E. (or this new term of “atypical M.E.”) if someone used these new international criteria–yet they in no way qualify as having the same disease I have. So I definitely see where this will be a problem in the future… But at least it’s a step, right? Comments are welcome.

a rainbow at night

11 responses to “Why I think the new Myalgic Encephalomyelitis International Consensus Criteria are not much better.

  1. Thanks for your thoughts on new international consensus definition..
    I have long had severe ME, Ramsey and Hyde definitions, and do not believe this new international consensus will be any use in discriminating ME patients. What it does is summarise the voluminous disparate findings of the CFS investigators in their diverse patient populations. Scientifically, one absolutely cannot base a definition on a group of patients with CFS and then call it a definition of ME. ME has perfectly good definitons, Ramsey and Hyde, and a few, fine doctors have been working with these for years in their medical practices.
    Good luck and enjoy your rainbow,
    A fellow ME patient..

  2. Thanks for covering this. Having been classified long before M.E. became recognized as any kind of entity in the US, I’m stuck with the label CFS both in my medical records and in my disability record.

    That said, I think that there are probably many like me, who fit the definitions of the tightest descriptions of the neuro-immune impairment.

    Another complicator is the fact that in my case, EBV was documented when I got hit – off the charts. So my brain fog is accompanied by even more definition fog – the so-called “rare” viral association, the neurological components, the immune activation…

    …well geeze, just where am I? What am I?
    I’m a person with a disabling disease. Whatever time the so-called authorities want to spend arguing, people like me are spending just trying to carve out a life.

    I’m gettin’ older – it probably won’t make any difference in my life except for the humiliation factor – but I feel for those who are younger than I and for whom there is more reason for insistence on being recognized and respected.

    Peace.

    • Sorry to post twice. I just went through the definition list here for M.E. again, have to chuckle – albeit with a dark humor – w-)herever it says at least one, or 3 out of 4, etc, I don’t have to worry about picking out symptoms that apply, they all do.

      So I guess I’m a mislabelled M.E.’er who got it post-virally.

      say that 3x fast!
      ;-)

    • I too am “stuck” with CFS (well, CFIDS) in my medical and disability records, however, from 2007 onward I have and continue to inform all doctors of what M.E. is and why I have it. Thus I at least have four years of papers stating that as my medical condition in my medical history. My neurologist likens it to a type of myopathy.

      I agree that there are many like you! I have another friend who fits the post-EBV scenario. After all, M.E. is classified as a post-viral state. And I, myself, do not care to argue over what is what, most of the time, for I have not the energy for it–the facts are out there if people want them, and you certainly can’t force them on anyone. It’s mainly important when it comes time for treatments, doctors, and in research settings.

      Researchers MUST use specific criteria or research will get no where, as it hasn’t for the past 30 years since CFS was invented. Doctors MUST understand that CFS is a category instead of a disease, so they’ll stop putting people into it whenever they can’t figure out what’s wrong with their fatigued patients. And people and organizations alike MUST understand that the dangerous graded-exercise therapy studies that “prove” it helps “CFS” did not in ANY way include any M.E. patients, so the government will stop trying to force this fatal “therapy” onto people with M.E. So yes, it is extremely important in certain settings, but not something we have to remind ourselves of in every day settings.

      • You make very valid points! I had not thought about some of the impact regarding research and government that you make clear.

        I admire your efforts with doctors to get the correct thing into the record. Perhaps I have been too lax in that regard. I do try to make sure they know that I am not “only” fatigued, that it’s not chronic fatigue, but is rather the outcome of a documented major viral hit with a constellation of signs indicating damage and continuing change.

        But, though I have said the label is ridiculous and completely non-descriptive, I have not insisted on another – figuring I’d only alienate the docs.

        You’ve given me not only important information, but much to think about.

        Thank you!

        Peace.

  3. I don’t know how you can seriously believe that CFS/CFIDS and ME are two different illnesses! Just because the CDC says something doesn’t make it true. This definition, not the CDC’s, should be the baseline of all future research. The inadequate definitions of the past should be discarded. This is an advance on the Canadian Clinical Definition (which was the best until now, involving many of the same people).
    These are two slightly different definitions of the SAME illness. I like the formulation ME/CFS because it emphasizes this fact. I find the new definition of ME to be superb and to be the most accurate definition of the inappropriately named CFS ever. I have virtually all of the symptoms mentioned and their grouping into categories is the simplest and most biologically explanatory view of the illness ever – what a great summation of the research of the last 50 years!
    If only this kind of clarity had been around when I first got sick 40 years ago!

    I find the explantion of “post-exertional malaise”, in which they point out this is way beyond “malaise”, the best part of the new definition. I used to have terrible muscle pain, but fortunately it is not as severe now. The worst sympton is the cognitive dysfunction resulting from BOTH mental AND physical exertion. This, as I think they say, is the “CARDINAL” symptom. I can’t see how this could be confused with depression. I would say, at least for me, the cognition dysfunction is more disabling than the physical dysfunction (if it is possible to separate them, which I doubt.)

    Mark Elliott

  4. You know when I was totally bedridden for nine months during the Very Severe Category I could not talk. I don’t see that mentioned. If I did attempt to speak it came out a jumbled mess of syllables. I could not comprehend what people said on the phone or in the drive through for a few years. The Severe category lasted five years and I am currently classed as moderate now 16 years into it, yet early on in the illness because I was still moving like a steam train I may have been categorized as mild yet I could hide many flaws but two years into the illness after memory loss and concentration and pain took hold I forgot how my previous life felt and no longer had any wherewith all to function anywhere near there. At least by gathering people in the very early stages I believe viruses with be located that mutate. I feel this was my experience two years in. Just before the VSC set in. The very first sign was a massive headache then water rattling around in my head. Today I function with about the capabilities of an eighty year old woman. I think eventually we will discover several different pathways to similar symptoms but which will become categorized as about three different diseases or illnesses. It is interesting to note Gulf War Syndrome will not be named Gulf War Disease though it has a pathway which is immunization. Who will be brave enough to stand up and speak against Big Phama when it could lead to connections being cut off they require to get drugs approved and distributed?
    Much gratitude to all who are working with integrity.

    • I agree that if we keep pursuing along these lines, we might eventually discover that we’re dealing with different illnesses. Dr. Kerr actually proposed 7 different subsets for the “CFS” we are dealing with today:

      Subtype 1 * This is one of the more severe subtypes. Effects are cognitive, musculoskeletal, sleep-related and anxiety/depression.
      Subtype 2 * This is one of the more severe subtypes. Effects are musculoskeletal, pain and anxiety/depression.
      Subtype 3 * This subtype has the mildest symptoms.
      Subtype 4 * This subtype is dominated by cognitive issues.
      Subtype 5 * Effects are musculoskeletal and gastrointestinal.
      Subtype 6 * This subtype is dominated by post-exertional malaise (extreme crash after exercise or exertion.)
      Subtype 7 * This is one of the more severe subtypes. Effects are pain, infections, musculoskeletal, sleep-related, neurological, gastrointestinal, neurocognitive and anxiety/depression.
      (The 7 Genomic Subtypes of Chronic Fatigue Syndrome)

      The recognition of the “severe” category is possibly the only thing good about the NICE guidelines… However, they recommend some very risky forms of “therapy,” and are otherwise very hated amongst true M.E. sufferers.

      I understand what you are saying, having gone in and out of severeity levels, myself. I am not really waiting on the government to come up with the answers, because whenever we make leadway, it gets trampled by some organization due to the global confusion of what “CFS” and M.E. really are… But if it happens, I’ll be elated. For now we can only hope to find those rare doctors that offer antivirals, antibiotics for opportunistic infections, and alternative treatments like Low Dose Naltrexone.

  5. Oh PS. I forgot to mention I was in a coma for a time. How long I’m not sure. No one was looking after me. I recall attempting to call out to my children. I could not move anything. Not my eyes inside my eyelids nor my little finger nor open my mouth. I lay there unable to change the rate of my very slow breathing and my very slow heart rate. I went back to sleep.

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