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:
- 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.
- 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”–while as of right now, as I’ve said many times before, that makes as much sense as saying “lung cancer/chronic cough sydnrome” or “HIV/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