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 on my site’s sidebar, you’ll find this, which I’ll repost:
“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.” (United States Centers for Disease Control and Prevention, 2010)
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, and distinct from that of CFS. The best definition for M.E. is Ramsay’s definition, 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” (Ramsay, A. . Myalgic encephalomyelitis and postviral fatigue states: The saga of Royal Free Disease. [2nd ed.]. London).
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 chronic fatigue as a symptom. The only thing any of these people have in common, is that they are very tired, and are very sick; some of them are dying due to misdiagnosis.
“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” (Jason, L., Najar, N., Porter, N., & Reh, C. . Evaluating the Centers for Disease Control’s Empirical Chronic Fatigue Syndrome Case Definition. Journal of Disability Policy Studies, 20, 93-100. doi:10.1177/1044207308325995).
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. There’s much debate over if other pathogens can trigger M.E., but it’s usually described as having a viral onset and is classified as such by the World Health Organization under “post-viral fatigue syndrome”; it is known to be contagious in the beginning stages. Cort Johnson wrote that Dr. Byron Hyde, a world authority on M.E. and contributor to the ICC, mentioned having “reports of over sixty” M.E. outbreaks from just 1988 to 2003, which were “no longer figured in the literature” and “were not given any mention in the ICC”. Additionally, these criteria have 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?
I strongly believe 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 dysfunction 24-48 hours after activity? “…[T-cell function] will depress for 12 to 24+ hours after exercise, but then rebound” (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 this 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 represents a greatly detrimental misunderstanding on their part, and to their efforts. You cannot afford to not understand something that shares so many symptoms with the disease you are studying. 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 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, 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.
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 you don’t experience rapid muscle fatigue. Your brain experiencing cognitive dysfunction in response to continued use isn’t the same as your muscles becoming weakened and eventually paralyzed with continued use.
I don’t know of many chronic illnesses in which you wouldn’t become more exhausted and ill after strenuous mental activity. But there isn’t a single other disease entity with the specific pattern of muscle fatigue exhibited by people with myalgic encephalomyelitis.
In addition to the obvious overlap with Lyme disease: In my own family I have people with ill-defined chronic disease who become extremely mentally fatigued as the evening wears on, and if someone used these new international criteria, they would qualify as having M.E. (or this new term of “atypical M.E”) despite absolutely not actually having it. I see first-hand where these criteria will be a problem in the future. But it’s at least a step, right? Comments are welcome.
♥ a rainbow at night