The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

The history and rebranding of M.E.

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Feb 17, 2015.

  1. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,615
    The history part of the report starting p27 states that ME/CFS is an umbrella term including the two separate terms ME and CFS.


    They state that there ere are criteria for ME like ICC, Ramsey’s and Hyde. Different criteria describe CFS, like Empiric, Fukuda and homes. Whereas the CCC uses the umbrella ME/CFS term.

    However, they conclude that there remains disagreement as to whether ME and CFS are separate conditions or are similar enough to belong under an umbrella term such as ME/CFS


    Are the two terms describing two separate diseases? Let’s look at the history of both. M.E. in Great Britain and CFS in the U.S.


    Great Britain:

    Outbreak in the Royal Free Hospital – 1955

    Symptoms described: tender lymph nodes, sore throat, malaise, signs of encephalomyelitis

    Name given – Myalgic Encephalomyelitis


    US

    Outbreak at Incline Village – 1984

    Symptom described: sore throat, lymph node pain, myalgia, headache, muscle fatigue

    Name given – Chronic Fatigue Syndrome


    The CDC was aware at the time of the Incline outbreak that this disease looked just like Ramsey’s ME yet gave it the name Chronic Fatigue syndrome.


    They have since tried to separate CFS from ME. They have done this with the name and with the different criteria like Holmes and Fukuda. They have tried to construct a new entity by broadening the criteria of this disease and by branding it a fatiguing syndrome.


    Now, to further confuse us, they are re-branding again with an even broader, simpler criteria and re-naming it once again to Systemic Exertion Intolerance Disease (SEID)


    The one million dollar question is: Which disease is SEID?
     
    ukxmrv and picante like this.
  2. Ember

    Ember Senior Member

    Messages:
    2,100
    Likes:
    2,360
    It may be worthwhile to consider the IOM Report in concert with the P2P. The AHRQ Evidence Report (December 2014) acknowledges that CFS, ME and ME/CFS may “identify separate groups entirely.” The P2P Draft Report further suggests that lumping together more than one disease (“e.g., Is ME/CFS one disease?”) may have resulted in inconsistent findings and/or research gaps.

    But the P2P Draft Report looks for a single case definition anyway: “ME/CFS exists;” “We believe ME/CFS is a distinct disease;” “A clear case definition with validated diagnostic tools is required before studies can be conducted.” The Panel recommends “that the ME/CFS community agree on a single case definition (even if it is not perfect).”

    Enter SEID. Why would a single case definition be used to diagnose and/or study more than one disease or patient population?
     
  3. Scarecrow

    Scarecrow Revolting Peasant

    Messages:
    1,903
    Likes:
    5,384
    Scotland
    It wouldn't.

    The IOM committee:
    The committee were tasked to distinguish between subgroups but were unable to due to lack of evidence. They noted the appalling lack of biomedical research, which prevented them from accomplishing that part of the task, and called for more research.

    [Edited: I've just realised (not for the first time :rolleyes:) that one of my posts is less than clear. Just to avoid all doubt, the point as I was trying to make was that there probably is more than one disease group but that the IOM weren't able to distinguish between any and thus called for more research.]
     
    Last edited: Feb 17, 2015
    Valentijn, snowathlete and Sean like this.
  4. Ember

    Ember Senior Member

    Messages:
    2,100
    Likes:
    2,360
    The International Consensus Panel proposes:
     
  5. Scarecrow

    Scarecrow Revolting Peasant

    Messages:
    1,903
    Likes:
    5,384
    Scotland
    @Ember The IOM criteria are for clinical use. They don't prevent researchers doing exactly as the International Consensus Panel proposed.

    By the way, MS is considered to consist of subgroups.
     
    Valentijn likes this.
  6. Ember

    Ember Senior Member

    Messages:
    2,100
    Likes:
    2,360
    Time will tell. For research purposes, the P2P Panel has recommended “that the ME/CFS community agree on a single case definition (even if it is not perfect).”
     
    snowathlete and Scarecrow like this.
  7. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,615
    It is true that the intent of the IOM was to create clinical diagnostic criteria but, since HHS pulled out their initial charge of the p2p to create research criteria, nothing stops them from using the IOM criteria for research as well.

    The Fukuda criteria were created for tea search purposes but, HHS ended up using it for clinical purposes as well.
     
  8. alex3619

    alex3619 Senior Member

    Messages:
    12,528
    Likes:
    35,244
    Logan, Queensland, Australia
    Let me remind everyone that even ME may be more than one disease. The only sure pure disease group are people from a single isolated cluster outbreak.

    SEID is clinical, but it would be a mistake to think it wont distort research cohorts at least some of the time. Every single definition, ME or otherwise, changes the cohort. When researchers call for a patient cohort in the future, if SEID kicks off, then they will largely have SEID patients referred to them.

    Yet the real issue is lack of awareness and education from doctors. Doctors have had the information about PEM, for example, and most of our other symptoms, for decades. Yet only a rare doctor could tell you what PEM is ... and ten docs might give you ten answers. The rest will make an educated guess based upon the name.

    The key thing here is that we need a way to operationalize determination of PEM status. Preferably it should be objective. Currently the only reliable way to do this is with a 2 day CPET, and that has its limitations, particularly with severe patients.

    I am not sure the major problems are with the report, though there are major problems with the processes leading to the report. I am still opposed to the IOM process, its just that the report has to be considered in its own right and I am still trying to figure that out. There will not be any simple answer.

    There is however another side of the issue as I have mentioned. Pervasive lack of education on this matter through the medical community, and that includes psychiatrists, is the major issue. This is complicated by the primary competing psych idea that this disorder is somehow psychogenic, and the proponents of this view will continue to publish information contrary to the biomedical view.

    If the public relations and medical education follow up from the IOM is strong enough this might make a dent on the issues with the medical community, even with a flawed report.

    What is needed, and may yet eventuate, is a detailed discussion on how to diagnose SEID, including how to identify PEM. Similar discussions need to be made about the other subcriteria.

    We wanted a definition that acknowledge PEM. We got what we wanted, though in a way we didn't want. It was forced on us.

    Let me also remind everyone that the IOM report is only a recommendation at this point in time.
     
  9. Forbin

    Forbin Senior Member

    Messages:
    960
    Likes:
    4,028
    After the Incline Village outbreak in 1984, there was a period when the disease was called Chronic Epstein-Barr Virus Syndrome or "CEBV" in the US. Articles with headlines like "Do you have CEBV?" appeared in a LOT of magazines back then.

    The name and connection to EBV came into question after a study showed that the vast majority of adult Americans showed evidence of prior exposure to EBV (although many CEBV patients seemed to show a re-activation of the virus, not just prior exposure). The ensuing vacuum led some to call it Chronic Fatigue Syndrome as early as 1987 (perhaps earlier).

    In early 1988, the CDC officially named the illness "Chronic Fatigue Syndrome."

    Later that year, Dr. Steven Straus seemingly disproved the EBV connection when nearly all of the 24 patients in a trial of acyclovir reported improvement regardless of weather they received the antiviral or placebo. That likely both killed the connection with EBV and provided "evidence" to those who thought that the illness was "all in the mind."

    [I wonder if the improvement reported among both subjects and controls might have had to do with the increased hydration they no doubt received after 3 of the patients dropped out of the trial due to the kidney damage they incurred as a result of inadequate hydration.]

    It would be interesting to know with whom the term "Chronic Fatigue Syndrome" actually originates. The first time I can recall hearing it was when ABC health correspondent Dr. Timothy Johnson used it (with big verbal quotation marks around it) in the summer of 1987, a little less than a year before it was officially adopted by the CDC.

    It also seems kind of strange that the ubiquity of EBV infection was not discovered until after the virus had been associated with outbreaks of chronic disease in the 1980's. Perhaps the outbreaks spurred research, or the technology to make that determination had only just come into existence.

    ETA:
    So far, the earliest reference in print I've found to "Chronic Fatigue Syndrome" comes from a 5/1/1987 LA Times article by Robert Steinbrook (who earlier broke the story on the Incline Village outbreak in the LA Times in 1986). The article titled "Fatigue Often Mislabeled Epstein-Barr, Studies Say" opens with this line:
    As early as mid-1986, when the Tahoe Outbreak was reported in the LA Times, there was already a 12,000 member National CEBV Syndrome Association operating out of Portland Oregon. So, the "syndrome" part of CFS seems like it was carried over from "CEBV syndrome."
     
    Last edited: Feb 17, 2015
  10. Ecoclimber

    Ecoclimber Senior Member

    Messages:
    989
    Likes:
    2,440
    So, some in the patient community are implying that the top ME/CFS researchers and clinicians are totally incompetent in understanding the historical aspects of ME/CFS even though they have been treating patients and conducting research for decades? Who are you then going to go to for treatment? Who is going conduct the research? Don't they know the ramifications concerning the new name with others in the medical field?

    “The Institute of Medicine was able to come out and say this is real, it’s chronic and it devastates many lives,” said Dr. Jose Montoya, an infectious disease specialist who helped establish a chronic fatigue syndrome team at Stanford University a decade ago. “For 30 years very few voices were saying that and people were not listening. And now here comes an institute with such visibility and clout, saying those words.”

    The report “has the potential to change the narrative of this disease,” Montoya said.
    http://www.sfgate.com/health/article/Fatigue-syndrome-validated-by-influential-group-6074054.php

    So basically, patients are saying he doesn't know what he's talking about? That is quite insulting and as if the patients know more?

    Ron Davis thinks its essential to do away with chronic fatigue syndrome. “My son is sick with it, and when I tell people, they say, ‘I had that once,’ because they were tired once,” he said. “ME is a better name, but there are no real data that fit the name which is the same statement that Charles Shepard has stated.

    But then we have the 'expert' patients who understand so well the rationale for the establishment of scientific criteria and methodology acceptable to the medical profession- even though they are not real scientist - and can dismiss outright, the statements from the ME/CFS researchers. It couldn't be the fact that we have the agenda of a small group of 'ME' patients whose sole purpose is to sabatoge outright any name that is not ME.

    You would also have to conclude that there is a hidden agenda among all the ME/CFS experts on the panel – from Ron Davis to Dr. Klimas to Dr. Bateman to Dr. Lerner – for not naming it ME or some other disease even though the physiologically is not supported in the research and two years later, it turns out to be a big mistake.
     
    Last edited: Feb 18, 2015
  11. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,615
    [
    This is really condescending and bullying remark @Ecoclimber!

    Did you read my first post? I was quoting an excerpt from the IOM report regarding the history of the disease/criteria.name.

    Yes. I dared question their statement that Ramsay's M.E. is totally different than the Incline Village's outbreak. I do not blindly accept interpretations of the history from anyone who calls themselves an expert. You don't need to be a scientist to follow the history.

    I really wish that you take this this derogatory accusatory statement!
     
    Iquitos and Wildcat like this.
  12. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,615
    If I can't freely express my opinions on Phoenix Rising, whether I question The IOM report or anything else in a polite way, this is not the place for me any longer.
     
  13. snowathlete

    snowathlete

    Messages:
    3,312
    Likes:
    14,618
    UK
    I agree with your point @Nielk that the two outbreaks they quote do look the same. Certainly no evidence to conclude they are different.

    But most patients suffering today didn't get it from these outbreaks, but their disease looks the same too. Do we assume then that they are the same too, because they look the same? I think we have to until we find some kind of marker to subgroup with. Isn't the IOM undoing the CDC's original hash of splitting these two groups then? Label like/dislike aside, they are saying that they are the same disease.
     
    Valentijn likes this.

See more popular forum discussions.

Share This Page