The Strategy Behind Renaming and Redefining Chronic Fatigue Syndrome in 2015

Guest Blog Post by Jerrold Spinhirne, S.E. - The views expressed may or may not represent the views of MEadvocacy.org as a whole.

The US Department of Health and Human Services (HHS) has paid the non-profit Institute of Medicine (IOM) $1,000,000 for the naming rights to the established neurological disease myalgic encephalomyelitis (ICD G93.3 ME). This is not science, but the exercise of raw political and economic power. The ridiculous name the IOM committee came up with after "much thought" has no legitimacy whatsoever and should be scrapped before more precious time and resources are wasted.

The disease was named myalgic encephalomyelitis originally in a 1956 Lancet editorial later attributed to Dr. E. Donald Acheson. Drs. A. Melvin Ramsay and John Richardson also used the name ME at this time. The name ME was based on careful clinical examination of thousands of patients from over a dozen outbreaks of the epidemic form of the disease beginning with an outbreak in Los Angeles in 1934.

The 1956 Lancet editorial, "A New Clinical Entity," said this about the name of the disease:

From the purely practical standpoint it would be useful to have a name for this syndrome. As the most helpful single feature in the recognition of this syndrome in the past has been the predominately normal cerebrospinal fluid, the names which have already been suggested, "Iceland disease" and "Akureyri disease," are not really appropriate.

The objections to any but a purely descriptive name for a disorder without a known cause or established pathology are obvious. For this reason, the term "benign myalgic encephalomyelitis" may be acceptable. It in no way prejudices the argument for or against a single or related group of causal agents; and it does describe some of the striking features of a syndromecharacterized by (1) symptoms and signs of damage to the brain and spinal chord, in a greater or lesser degree; (2) protracted muscle pain with paresis [partial paralysis, muscle weakness] and cramp; (3) emotional disturbances in convalescence; (4) normal C.S.F.; (5) involvement, in some variants, of the reticuloendothelial system [part of the immune response system]; (6) a protracted course with relapses in severe cases; and (7) a relatively benign outcome. [Death did not occur immediately after onset.]


It remains to identify this syndrome more precisely; but we believe its characteristics are now sufficiently clear to differentiate it from poliomyelitis, epidemic myalgia, glandular fever, the forms of epidemic encephalitis already described, and, need it be said, hysteria.


This is the history of ME that HHS is seeking to erase by hiring the IOM. Making ME disappear serves several purposes for HHS:

1. It covers up a series of errors, and misconduct, at the NIH and CDC in dealing with the disease beginning in 1985. HHS wants to preserve the perceived authority and credibility of these agencies, even if it means contributing to increased levels of disability and premature death in the population.

2. It protects the economic health of the private insurance industry, which HHS evidently values more highly than the public health.

3. It saves HHS the cost of appropriately funding research on a major neurological disease. Instead, HHS gets away with spending a pittance every year on a trivialized fatigue-based illness that has been greeted with skepticism by doctors and the public.

Seeing that the deception created around CFS was breaking down after 30 years, HHS wants to begin the cycle afresh by creating a new, updated version of CFS, using the IOM, with yet another inappropriate, trivializing name. This new pseudo-
diagnosis will then be used to bury ME even further. This must not be allowed to happen all over again.

 

 


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  • commented 2015-02-14 17:56:26 -0500
    There are questions below about how this renaming and redefining effort saves costs. It’s very simple, if medical professionals and the general public perceive our illness to be trivial there will be no outcry for funding for research and services for patients. And what insurance will pay for is based on government health agency information.

    The evidence is in the history of how this was already done to ME via the creation of CFS. With the ICD-10 going into effect in the US as of October of this year, ME will have its own billing code separate from CFS. This is why the IOM had to create a new name that combined both conditions and why their report is calling for the creation of a new code for SEID – so that it will be used instead of the code for ME. The change had to be made to continue to hide ME. First it was hidden under CFS and now it will be done with SEID.
  • commented 2015-02-14 17:32:04 -0500
    This is a guest blog post, which may or may not represent the views of MEadvocacy.org as a whole. We are currently working on formulating a comprehensive strategy going forward.
  • commented 2015-02-14 07:21:50 -0500
    The aim of the name-change is to make THE NAME “ME” disappear. The reason for this is that they do no believe that THE ILLNESS ME exists.

    That is why they themselves say-: “SEIF is not ME”. That is what we should all bear in mind.

    SEID stands for “systemic exertion intolerance disease” a name which has
    been created, according to its authors, to “replace ME/CFS”. The authors
    have made it clear that they do not accept the evidence for the existence of
    muscle plain and inflammation (i.e. the very definition of the words myalgic
    encephalomyelitis) and that for this reason they have not used “ME” in their
    new name (cf. “ME/CFS”, which did use ME in the name.)

    Our campaign should focus on the fact that there IS evidence of muscle plain and inflammation. There IS an illness called myalgic encephalomyelitis. We should be GLAD they do not use the name ME because they do not believe that this illness exists.

    We do.

    The ball is in our court.
  • commented 2015-02-14 04:15:05 -0500
    I have the same questions as Barbara. Regarding pt. 3: The report makes it very clear that much more funding is essential:

    “Remarkably little research funding has been made available to study the etiology, pathophysiology, and effective treatment of this disease, especially given the number of people afflicted.”

    “Finding the cause of and cure for ME/CFS may require research that
    enlists large numbers of patients with this disorder from which important
    subsets can be identified in terms of disease symptomatology, responses to
    physical and cognitive stressors, brain imaging, the microbiome, virology,
    immune function, and gene expression.”

    —> brain imaging, virology, immune function, gene expression – doesn’t sound trivializing to me.

    So when you say in pt. 3 this report is designed to save HHS costs on funding, this is your interpretation. It shouldn’t be stated as facts.

    In my opinion Instead of saying that this report is designed to cut funding costs, it would be from a PR point of view more wise to emphasize on these messages cited above and to lobby that the requested funding will be given. The report gives strong arguments for this.

    (Of course there are always different opinions, which is fine, but in this case me and my husband donated a substantial amount of money for this campaign, so I think it is legitimate to express concerns).
  • commented 2015-02-13 23:58:56 -0500
    This is very interesting to read. Do you have evidence to back up the three points you made re the motivation of the HHS’ reasons for coming up with a new name? I think it’s very important to always say why you are making this kind of statement. Also, how is the economy of the private insurance company helped by a new name?