ME (myalgic encephalomyelitis) is not chronic fatigue syndrome or SEID.

This table indicates the rate of symptoms of 420 UK patients who were classified as having myalgic encephalomyelitis. This is from ‘Myalgic encephalomyelitis–a persistent enteroviral infection?’, a report published in 1990, shortly after Dr. Ramsay’s death. It was the last thing he did.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2429637/

CFS and ME/CFS were introduced in 1988, after an outbreak of a fatiguing illness in the Lake Tahoe area. ME was already an established name for a particular disease. The new disease did not fit, so ME and the new disease were thrown together and conflated.

The Institute of Medicine has recently renamed ME/CFS to SEID, systemic exertion intolerance disease. The committee noted that ME/CFS did not feature myalgia (muscle pain), or symptoms of encephalomyelitis (inflammation of the brain and spinal cord).

Out of the 420 patients in the table, 383 had evidence of enteroviral infection. Only 3 had evidence of Epstein-Barr virus. ME is overwhelmingly an enteroviral disease.

Note that chronic fatigue is not even on the list. Muscle fatigue or weakness occurs in 100% of patients. Myalgia or muscle pain occurs in 80% of them. According to the IOM, all SEID patients have chronic fatigue, myalgia is not an important symptom, and muscle weakness is not mentioned.

Auditory phenomena occur in 69% of the patients. Tinnitus is very frequent, and deafness is mentioned. This is due to an infection of the central nervous system. Tinnitus is infrequent in SEID. Auditory phenomena occur at a rate three times that of orthostatic tachycardia in ME. POTS is much more infrequent than tinnitus.

Visual disturbances occur at a much higher rate than with SEID. Hyperaethesia, or sensory hypersensitivity, occurs at a very high rate.

It is clear that ME is an infection of the brain and spinal cord, which affects the muscles, and is an immune deficiency disease that allows the infection to persist. Enteroviruses spread by infecting neurons. High rates of neurotransmitter activity, primarily serotonin and glutamate, are brought on by the immune condition. The receptors that these neurotransmitters bind to are infected by the virus.

ME is a very serious disease. SEID was never ME, and the conflation of the two completely different diseases has brought harm to ME patients, and is continuing to do so.

The IOM’s renaming of ME/CFS to SEID is welcome for ME patients. And it is timely because there is currently an epidemic of enterovirus 68 that is infecting children in the US and Canada. Many of them may develop ME, not SEID.

I demand that all Facebook groups, ME associations, websites, blogs, and other entities that use the name ‘ME’ or ‘ME/CFS’ immediately change their names, unless they are devoted specifically and only to myalgic encephalomyelitis.

12 thoughts on “ME (myalgic encephalomyelitis) is not chronic fatigue syndrome or SEID.

  1. SEID or chronic fatigue syndrome is primarily caused by Epstein-Barr viruses, or other viruses of the same type, HHV-5, 6, and 7.

    ME is a polio-like disease with neurological complications.

    The authors saw the mistake in conflating ME with other infections in 1990. They were not heeded.

    “Differentiation ofthe ME syndrome from other forms of post-viral debility

    In our opinion, two major errors are responsible for the present confusion surrounding the case definition, aetiology and diagnosis of ME. First, there has been a failure to distinguish the syndrome from post-viral debility following Epstein-Barr mononucleosis, influenza and other common fevers. Compared with ME, these lack the dramatic effect of exercise upon muscle function, the multi-
    system involvement, diurnal variability of symptoms and prolonged relapsing course. Laboratory tests can distinguish chronic mononucleosis and other infections which, as our results show, may occasionally co-exist with ME and, by their immunosuppressive effect, precipitate relapse.

    Second, there has been a failure to recognize the unique epidemiological pattern of ME, which, from earliest accounts, has lead to confusion with non-paralytic poliomyelitis.”

  2. EV-D68 appears to not be limited to children though, i would respectfully add. A British Columbia man apparently died of the viral infection about six months ago, as previously noted elsewhere on this very informative site.

    Quote: “The BC Centre for Disease Control said the case is a reminder that adults are not immune to complications that can occur from EV-D68”
    http://www.ctvnews.ca/health/b-c-man-dies-after-contracting-enterovirus-d68-1.2058816

    Quote from above: “I demand that all Facebook groups, ME associations, websites, blogs, and other entities that use the name ‘ME’ or ‘ME/CFS’ immediately change their names, unless they are devoted specifically and only to myalgic encephalomyelitis.”

    Seconded.

    How many more will be debilitated as so-called doctors ignorantly demand a regiment of exercise to their victims (er .. patients)?

    People generally make mistakes (some liberally). People generally tend to repeat the same mistakes. Some learn from their mistakes, and others may learn from the mistakes of others … Most don’t seem to give two hoots, until they are affected. Mainstream Media doesn’t seem to help. After all, they apparently know almost nothing about everything…

    Title: “Phosphatidylserine Vesicles Enable Efficient En Bloc Transmission of Enteroviruses” http://www.cell.com/cell/abstract/S0092-8674%2815%2900075-6
    (“Received 2 October 2014, Revised 13 December 2014, Accepted 12 January 2015, Available online 12 February 2015 Published: February 12, 2015”)

    MSM couldn’t be bothered to reveal that link above. http://www.nbcnews.com/health/health-news/enteroviruses-gang-infect-research-shows-n306066
    (i like the local King5 NBC affiliate, as they are independantly owned, iirc, and willing to expose Hanford’s willingness to expose workers, residents, wildlife, etc)

    [OT] Doc demands a prostate exam & dons his gloves. I turn & ask him mid “procedure” (5yrd penalty in CFL) “Isn’t there a protein test for this instead?”
    (… paging Doctor Baird … paging Doctor Baird … you left your tennis racket in surgery)
    “Doctors bury their mistakes. Architects have ivy planted.”[/OT]

    Go get ’em, Mr. S! You to are a gentleman and a scholar, imhpo.
    Too many others seem to have elected to throw the ball instead of handing it off to their DB (whom could have been MVP) with 3 downs remaining, or thrown it to a receiver in a end-zone corner, so-to-speak. D’oh.

    • The IOM report should make the psychiatrists take exercise out of ME and SEID/CFS. It is equally harmful to both. For me, the effects of exercise are delayed for 24-48 hours, when it hits me like a ton of bricks. Not fatigue, but neurological symptoms.

      I’m sure this is true for ME in general. Muscles release TGF-beta 24 hours after exercise. This is in the muscle-strengthening phase. Myostatin is reduced, follistatin is increased. That means interferon-gamma is flowing into the muscles. The reduction in IFN-gamma in the bloodstream is setting off the symptoms because it is already disastrously low.

      I don’t know if this happens in SEID. Immediate symptoms after exercise, which subside in 24-48 hours, indicates an autoimmune disease, not an immune deficiency disease.

      • I remembered some of the first-person experiences relayed by those enduring M.E., including yourself, and how it is harmful and not helpful. Is 24-48 hours the latency period for the immune response to degrade neural conductivity sufficiently, am assuming, for symptoms to increase substantially to hit one “like a ton of bricks” (or blocks)?
        Today is the first time i have heard of SEID, but then again i had not heard of M.E. until reading of your experiences many moons ago, and my understanding of such detail is as-of-yet very limited. It seems interesting how SEID has a latency period of similar time-frame, though if i have read that correctly that is how long it takes for symptoms to subside. The immuno-deficiency may have been drastically affected by Fukushima, WIPP’s “Valentine’s Day Massacre” (and ongoing presumably), Pantex, Honeywell Metropolis Works, etc.
        I can relate to how many feel when i try to relay some computing concepts.

        Quote: “IFN-gamma is a dimeric protein with subunits of 146 amino acids.”
        http://www.copewithcytokines.de/cope.cgi?key=IFN-gamma

        That site name reminds me of “cytokine storm”.

        What if IFN-gamma doesn’t fold properly while synthasized?
        Is it possible that there are multiple potential errors that lead to a wide spectrum of disorder? (am thinking of Lorenzo’s Oil, in that answers might flow when people care enough to take time to study & ask questions, even if not initially competantly educated. I would try the “Ms. PacMan effect”, but that would be a cruel.)

  3. IMHO, when it comes to disorders of the nervous system, the medical establishment is pretty much stymied. After all, nerves are in the entire body. After months of tests, I was diagnosed with NCS (neurocardiogenic syncope), but personally I don’t think the doctors have a clue. NCS is called an “autonomic failure of the sympathetic nervous system”. I won’t bore you with the details except to say: (1) Based upon my circumstances, and the fact that radiation often first affects the nervous system, I believe my condition was/is caused by radiation, and (2) when a doctor tells me to exercise , I now just stare at him like he is a crazy person. I can barely walk across the room without panting. Going up or down the stairs causes my blood pressure to fall so low that I gasp for air and fall down. Exercise? What a laugh.

    • OMG weez… this is common in ME but especially SEID (formerly ME/CFS)…. viruses, either new ones you catch, or old ones lingering in the tissues, are activated when radiation affects the immune system. They infect the brain, nervous system, or the immune system itself. I had just a little of what you have early on in my illness. Now, walking is difficult, because my legs are turning into a painful blob of rubber.

      • Really? I wondered about SEID because your symptoms sound very similar to mine. I am so very sorry, Bobby, that your illness has become progressive to such a debilitating extent. It’s awful. There are no words for all the suffering, loss, and grief that radiation is causing in this world. I will continue to read your blog everyday, like I always do, because it is utterly informative and caring. Maybe you or someone will discover something that helps. For myself, I take Gabapentin for the seizures and Seratrine to cut down a bit on the blood pressure plunges. If I discover anything else I will, of course, let you know. The last doctor I went to said the only thing I could do was to have “a lifestyle change”. Duh, definitely already doing that.

        • Here are the new criteria. Now, if you have anothe disease diagnosed, it would override it:

          Diagnosis of ME/CFS requires that a patient have the following three core symptoms:

          A substantial reduction or impairment in the ability to engage in pre-illness levels of activities that persists for more than six months and is accompanied by fatigue—which is often profound—of new or definite onset, not the result of ongoing excessive exertion and not substantially alleviated by rest

          The worsening of patients’ symptoms after any type of exertion—such as physical, cognitive, or emotional stress—known as post-exertional malaise

          Unrefreshing sleep

          At least one of the two following manifestations is also required:

          Cognitive impairment

          The inability to remain upright with symptoms that improve when lying down—known as orthostatic intolerance

          These symptoms should persist for at least six months and be present at least half the time with moderate, substantial, or severe intensity to distinguish ME/CFS from other diseases.

        • See, I have post-exertion malaise too… but it means something happens to my brain, not my heart, and is delayed 1-2 days after exercise.

          • Oh yes, I definitely have all of those. This is my fifth year of illness. I hate the cognitive impairment. I try very hard to avoid motion and stress because of that and the many other symptoms. Flying in an airplane, any higher than normal altitudes, not having the ability to lie down and rest in a social situation, and emotional stress may bring on mental and spatial confusion. Thanks ever so, Bobby!

  4. The Institute of Medicine encapsulated the whole syndrome of ME/CFS in 3-5 criteria.
    It renamed the syndrome systemic exertion intolerance disorder- and as usual, it advised against extensive testing.
    So if you have severe fatigue for longer than 6 months, unrefreshing sleep and post exertion malaise, plus orthostatic intolerance and brain fog, you would qualify for this debilitating disorder.
    The Achilles Heel of all the guidelines is the strange advice against testing.
    The best protocol I have ever seen is that of Dr. Shirwan Mirza, and endocrinologist and an expert in the field located in Auburn, New York, USA- who approaches the whole body in one visit and he goes against the guidelines doing exactly the opposite. He would see a patient for ~ 2 hours and examines the patient from head to toe and then he orders tests to address every subtle disease that can be easily missed; he challenges the reference ranges of many laboratory tests and goes extra miles to uncover hidden, or subclinical disorders. He basically does everything he can to put you in the “exclusion criteria” because if you check 5 symptoms and you meet 4 of them, your life would be under the rubric of a disease that has no treatment and your life as you know it would be over. His office has just started seeing international patients. His book has been awaited by the ME/CFS community for years and he has launched a web site for his book. He has published many articles on ME/CFS including an extensive one in the British Medical journal. (Google: Shirwan Mirza, MD and fatigue).

    https://www.facebook.com/MECFSmetabolicapproach
    I would rather do tests to be under exclusion criteria than be labeled as ME/CFS or whatever the new name is “SEID”.

    • My disease has something in common with only of the worst Epstein-Barr ME/CFS cases. The neurological, muscle, and immune phenomena are much stronger than the typical ME/CFS case… Fatigue and lack of energy usually much less so… though the past March was really gnarly for everything.

      My hand-foot-mouth rash suddenly went away at the end of March, when the weather warmed up. Psoriasis started coming back with a vengeance. Was able to concentrate again.

      Severe cold front came through yesterday. Huge relapse started this morning. Crap.

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