Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Myalgic Encephalomyelitis: a brief historical introduction

Discussion in 'General ME/CFS Discussion' started by Ember, Nov 7, 2017.

  1. Ember

    Ember Senior Member

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    What is Myalgic Encephalomyelitis: A Brief Historical Introduction
    ~by John Duncan and Maryann Spurgin
    https://docs.google.com/document/d/...rpisFHre9YR25uO3M/edit#heading=h.dp2zvnpo8one
     
  2. johnnydme

    johnnydme

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    Hi All,

    Ty to @Ember for posting.

    Since this introduction was meant to be rigorous I'd thought give it a bit of explanation: I think one of the issues that bedevils our disease, and attempts to advocate for it, is that there is so much misinformation; especially, but certainly not limited to, sites like the Mayo Clinic, Medscape, CDC (which are broadly viewed, by the public, media and most likely new patients, as trustworthy).

    Just to share a bit of my own story ( I assume it will ring familiar for many ) when I got sick I had to rummage through a ton of websites looking to answer the to question: “What am I sick with?” ...and once diagnosed with ME by a specialist...still it turned out many support sites had unreliable information, or even misinformation.

    At that time, even things viewed as very reliable ( such as co-cure ) were not necessarily helpful since they only policed tone. And, more importantly, the posts were things of interest to specific persons, or organizations–rather than “newbie help.”

    I remember even support and advocacy organizations often had conflicting information about the disease, how to diagnose it, what the prognosis was, treatments…Sources like immunesupport (prohealth), aboutmecfs (phoenixrising), the ME Association, MERGE (ME Research UK), CFIDS Assoc. Of America (Solve ME/CFS Initiative), RESCIND, MESA ...and many others often offered flatly contradicting views.

    For myself, making sense of all this was a major task. One had to sort opinions... from facts... from personal experience which was generalized. If we could spare new and future patients that with a referenced introduction I thought it would be a worthy endeavor.

    This introduction was written by myself and Maryann Spurgin. I tried very hard to make it:
    • Concise.
    • Facts rather than Opinions.
    • Referenced.
    • Thorough.
    Also, there is an opinions section where both facts we couldn’t fit into the narrative and opinions ( in my view: opinions which have strong reasons for accepting them ) are presented but labelled as such.

    Hope people, especially new patients ( for whom the history can be overwhelming ), find this useful!

    thanks,
    -jd

    While it probably can't be changed in the short-term it would be nice to get feedback (both kinds) so I'm tagging some people who I remember are on this forum: @alex3619 @Janet Dafoe (Rose49) @Liz Willow @JayS

    Lastly, I hope this introduction ( or a slightly modified form ) could be useful to new doctors and researchers too...
     
    Last edited: Nov 9, 2017
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  3. johnnydme

    johnnydme

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    for people who dislike google docs, here is the introduction section:

    Myalgic Encephalomyelitis: A Brief Historical Introduction

    Leaving its victims immobilized in dark rooms, often unable to care for themselves or perform simple tasks such as meal preparation or walking out of a room, (I) Myalgic Encephalomyelitis (ME) may be the world’s most common “unknown disease.”

    In the United States alone, roughly between several hundred thousand and one million people are estimated to be affected [1].

    The name “Myalgic Encephalomyelitis” comes from a 1955 outbreak of the disease at the Royal Free Hospital in London [2] described by A. Melvin Ramsay and others. For the chronic phase of the disease, (II) Ramsay described a triad of distinguishing hallmarks: muscle fatigability after trivial exertion, circulatory impairment, and cerebral dysfunction [3]. The name was proposed by Sir Donald Acheson, later the UK’s Chief Medical Officer [4-6].

    In the first half of the twentieth century, Myalgic Encephalomyelitis outbreaks appeared to be associated with polio outbreaks, but with the eradication of polio the meaning of this connection has not been given attention [6-8].

    In the 1980’s an outbreak occurred at the resort town of Incline Village, Nevada. Although eventually the CDC was convinced to investigate, instead of recognition of this outbreak as Myalgic Encephalomyelitis, the ultimate result was the creation of a new syndrome construct, "Chronic Fatigue Syndrome,” with a new definition: the Holmes Definition [9]. Mistakenly, the new definition privileged rarely seen symptoms and made essential symptoms such as intolerance to sensory or cognitive stimulation and the hallmark 24-48 hour delayed post-exertional worsening of all symptoms optional.

    By the end of the 1980's, there was a conceptual divergence between the “classic ME” definitional frameworks and the “Holmes CFS” definition. Unfortunately, the current scientific literature on pubmed shows that many investigators chose to use these definitions and terms interchangeably.

    The CDC’s subsequent 1994 redefinition of the "CFS" symptom construct [10] has contributed to widening confusion about the relationship between the collection of sufferers who fit the CDC definition of Chronic Fatigue Syndrome and sufferers of Myalgic Encephalomyelitis. The 1994 redefinition—immediately adopted by most of the research community—broadened the earlier definition without fixing its fundamental flaws. Two of its most egregious errors for describing ME are the lack of the requirement of integral signs and symptoms to obtain a diagnosis–such as delayed post-exertional malaise–while at the same time the imposition of a superfluous 6-month waiting period as a requirement for diagnosis. In most any chronic disease, much of the consequential and interesting pathobiology–as well as the highest response to treatment–will occur in the first few months after development, yet both the 1994 and 1988 definitions forbid study of this crucial period.

    The broadness of the 1994 definition has also allowed some health bureaucrats and academics (III) to argue that the illness is a heterogeneous continuum of “fatiguing illness.” This problem was exacerbated by repeated statements by members of the CDC and the then-lead NIH researcher Stephen Straus that "the illness" was psychosomatic [11,12] (meaning Chronic Fatigue Syndrome and Myalgic Encephalomyelitis inclusively), qtd:

    Advocates and researchers have long argued that the broadness of the 1994 CFS definition creates an artificial heterogeneity where non-related disorders (e.g., Multiple Sclerosis, Chronic Migraines, Primary Sleep disorder, depression, Lyme disease and a host of other diseases) may be diagnosed as CFS, leading to treatment failures and treatment neglect in often treatable diseases. In research circles, this problem of defining the disease is often likened to parable of the blind men examining the elephant. However, it is more accurate to say that the definition opened the elephant pen to giraffes and rhinoceroses too. (IV)

    Another complicating factor is that many clinicians in the United States are uncomfortable diagnosing Myalgic Encephalomyelitis, and so diagnose, if at all, Chronic Fatigue Syndrome when presented with a patient with ME. (V) This undesirable situation leaves ME patients in a no-man's land between medical specialties, and without the tools to gain vital support from friends, family and co-workers. (VI)

    Further gross misunderstanding follows from the CDC’s and NIH’s erroneous representation of "fatigue" as a characteristic symptom; fatigue is a physiological state that all human beings experience.

    Valiant attempts have been made to improve the definitions so that a single disease population is under study—for instance, in 2003 with the Canadian Consensus Definition [13] and secondly in 2011 with the International Consensus Definition [14]. (VII)

     
    Last edited: Nov 9, 2017
  4. perrier

    perrier Senior Member

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    Thank you. From my recollection, ( and I'd be very very happy to be corrected), I seem to recall reading that Dr Hyde is a little standoffish regarding treatment.

    Congratulations on your work.
     
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  5. johnnydme

    johnnydme

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    Hey Perrier,

    Sorry for the long delay in response. The day or two after I finished the earlier message I had a bad crash which lasted for almost two weeks.

    Regarding Dr. Hyde's opinion on treatments while I don't know his current opinion based on the books cited ( some of which it should be noted are even decades old ) it appears he believes treatment is solely supportive. If you are asking whether he believes the damage can be cured or whether it is permanent, like with Polio, I am not sure. ( I personally believe it is probably something that can be cured, or greatly improved, but also that the science isn't there to say with certainty )

    I hope you don't mind me digressing a bit and going into my own beliefs:

    Apart from Ampligen, we know of no treatments which can lead to sustained remission or cure. Even for that, it seems likely it would help some but not all.

    So, it seems to me the thing we need most of all is more high quality science in this field.

    Unfortunately, if you go to a doctor, very many of them believe the misinformation that this disease is "chronic fatigue" or have an otherwise inaccurate view.

    Therefore we need activism/advocacy to change public and institutional views of Myalgic Encephalomyelitis to something which is actually reflective of what we know.

    Going from cures to science to advocacy is a bit melancholy it feels like we are getting dragged down to the bottom of the hill and have to trudge up all again.

    However, it is important we face hard truths and not delude ourselves. I remember a professor once told me on the topic of this disease "Science is the only way forward."

    I agree with that statement. Of course we could get lucky and someone could serendipitously discover a treatment but it would be unwise to count on such an occurrence.

    Thanks, sorry that is a big digression from Byron Hyde's views. My own view is there is no reason to assume a cure can't be found if we have science to better understand the mechanism behind the disease--especially as relates to the 24-48 hr. delayed relapse following exertion/stimulation.


    Kindly,
    -jd


    P.S. On Ampligen I have heard conflicting views. Apparently, some people such as Floyd Skloot say they were harmed by it while others such as Mary Schweitzer ( http://slightlyalive.blogspot.com/ ) swear by it.

    PPS. The introduction mentions what is in my view, the central flaw in most research on Myalgic Encephalomyelitis–use of inappropriate definitions. However there are others, bad experimental design, poor choice of controls, conclusions not matching results (another favorite of the PACE authors), inappropriate assumptions about the patient experience.

    To give an example of this one, Straus is quoted in the ABC piece as saying "no matter what, patients will tell you they are doing better." One thing, I believe, which was actually going on is that patients would report some help simply to preserve the doctor-patient relationship. How many of these people had seen legions disbelieving doctors, and were at the end of their rope, when presented with a potential treatment?

    Likely, nearly all of us here have had the bitter experience of a doctor turning hostile when their advice/treatment suggestion didn't work and many patients would probably sugar-coat something "not working" to keep a seemingly sympathetic doctor interested in their case.

    Secondly, given his quote, Straus was treating people under the umbrella of "chronic fatigue" and so likely some of these "chronic fatigue" patients did get better.
     
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