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.
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Which version of Ramsay's Disease is better?

Discussion in 'Institute of Medicine (IOM) Government Contract' started by OneWaySurvival, Feb 19, 2015.

  1. OneWaySurvival

    OneWaySurvival Senior Member

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    Although medicine is trending away from Eponyms (diseases named after people), there are certain situations where they are still appropriate, all of which may apply to the ME/CFS/SEID debate.
    • The name may be shorter and more memorable than the medical one
    • Sometimes the medical name proves to be incorrect
    • The syndrome may have more than one cause, yet it remains useful to consider it as a whole
    Recent polls of the ME/CFS/SEID community reveal that Ramsay's Disease is a very serious contender, if not the top-vote getter.

    I support the idea of using this name, or some variation of it, as a solution for the worldwide patient community to unite and have a path forward out of the disarray ensuing from the IOM report.

    First, I would like to point out how the IOM report itself discourages the use of a symptom-based name such as CFS, and yet they went right back there again and we are left with a similar problem with the name SEID, even though it is a major step forward to call this a disease.

    However, if we patients are going to make a serious case for using the name Ramsay's Disease for future advocacy efforts (even though the medical community will likely argue over their own ME/SEID/CFS terminology for many years to come), we need to recognize that the name Ramsay's Disease might have to be modified to Melvin Ramsay Disease or perhaps Acheson Ramsay Disease for reasons I will state later.

    I am interested in patient feedback, especially from the international patient community on using some variation of the name Ramsay's Disease.

    Chapter 2 of the IOM report presents a historical context for the naming and possible re-naming of the disease(s) M.E. and CFS.

    On page 28 of the IOM report, the history of ME and CFS is described:
    Page 30 goes on to describe the negative impacts of the name "Chronic Fatigue Syndrome" which was notoriously named by the United States CDC in 1988.
    This history acknowledges that a name based on symptoms is not ideal due to the ease in which single symptoms can be dismissed by doctors and the general public, and also because of the difficulty with translating the name into other languages. So, why did they settle on a symptom based name of SEID?! This same historical summary credits Sir Donald Acheson as first coining the name "benign myalgic encephalomyelitis" and then Dr. A. Melvin Ramsay as the one who defended the organic nature of the disease, encouraged the removal of the word "benign", and then continued to use the name M.E. for many decades after.

    For these reasons, I propose the name Acheson Ramsay Disease as a flexible but historically accurate name until etiology and pathophysiology are further researched, and agreement can be reached on clinical and research definitions, processes which will likely take many years to complete.

    While it may seem preferable to simplify the eponym to the shorter Ramsay's Disease, as a few others have pointed out, there is a potential deal-breaker with Ramsay's Disease.

    Three other neurological diseases are already associated with another individual named James Ramsay Hunt (e.g. Ramsay Hunt Syndrome). This may not seem like a big deal to a lay person because Ramsay's Disease sounds very different from Ramsay Hunt Syndrome. But, I spoke with a doctor who was adamant about the likelihood that the panel and the medical community would reject it outright because of the overlap of these disease names. Doctors like to be crystal clear about their disease name descriptions.

    However, this same doctor said the differentiating names of Acheson Ramsay Disease, or alternatively, Melvin Ramsay Disease would be acceptable.

    The best name of these two proposals might come down to which name is more marketable, but definite consideration should also be given to whether Sir Donald Acheson is remembered by patients as having a long-term positive impact on this field. If not, then Dr. Ramsay alone should have this honor, and the name Melvin Ramsay Disease is offered as the most appropriate name going forward.

    The above proposal leads me to ask 2 questions for the Phoenix Rising audience:

    1) Are there any UK patients here that can give insight into the positive or negative impact that Sir Donald Acheson has had historically on M.E. patients?

    2) What are people's opinions on the names Acheson Ramsay Disease or Melvin Ramsay Disease if the shorter Ramsay's Disease is "already taken" and therefore not viable?
     
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  2. slayadragon

    slayadragon Senior Member

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    I think that as chief medical officer in the UK in the 1980's and early 1990's, Acheson should have done more to shut down Wessely in terms of burying this disease. So I do not think he deserves to have the disease named after him.

    I think Melvin Ramsay's Disease, shortened to Ramsay's Disease informally, would be fine.
     
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  3. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Nobody is going to confuse Ramsay's disease with Ramsay Hunt syndrome - I think the neurologist was being obsessive. Nobody ever called RHS 'Ramsay's' without the Hunt and nobody uses the term now anyway. Ramsay's disease is fine. The only concern I would have is that that Ramsay may have described a rather unusual epidemic form which may no longer exist.
     
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  4. lansbergen

    lansbergen Senior Member

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    I think it is endemic.
     
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  5. Sing

    Sing Senior Member

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    I like Ramsay alone. I like the Scottish heraldic symbol for Ramsay which is of the head of a unicorn.

    Adding Acheson or Melvin makes the name too complicated. We don't need another complicated name.
     
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  6. Nielk

    Nielk

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    This is Ramsay's description of M.E. One does not have to be part of an outbreak to be diagnose with it.
     
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  7. OneWaySurvival

    OneWaySurvival Senior Member

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    That is good to hear that Ramsay's Disease may not conflict with Ramsay's Hunt Syndrome after all, Dr. @Jonathan Edwards . I am glad to have a "2nd opinion" from another doctor such as yourself as to whether this is a deal-breaker or not. I feel it is good to get these things out in the open and discussed before we get too far down the road again and have to do more do-overs in the event patients are successful in helping to coin Ramsay's Disease.

    As to your concern about what he was describing vs. what is ailing patients today, I actually find it remarkable how similar his descriptions in the 1950's (and later applied in his formal 1986 definition) compare to the definitions still in use today. I see this as further justification to use his name for M.E patients going forward.

    For others who are interested, see a short bio on Dr. A. Melvin Ramsay here.
     
    Last edited: Feb 19, 2015
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  8. charles shepherd

    charles shepherd Senior Member

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    The MEA has republished Melvin Ramsay's book that covers the historical outbreaks of ME:

    https://d.gr-assets.com/books/1346077242l/15852201.jpg -

    including the famous outbreak at the Royal Free Hospital, which led to The Lancet editorial and the widespread introduction of the term ME/myalgic encephalomyelitis here in the UK

    There are detailed accounts of what Melvin described as the epidemic form (ie the outbreaks in Iceland, South Africa/Durban, Cumbria, Royal Free etc) of ME as well as the sporadic (i.e. individual cases) form of the disease in the book

    It should be noted that the clinical descriptions - which included hard neurological signs such as cranial neve palsies - of the doctors and patients who were admitted to the Royal Free Hospital are not the same as the clinical presentations that we commonly see during the acute phase in sporadic cases today

    I knew Melvin for many years, right up to the year he died, and discussed these similarities and differences with him on many occasions

    The book is essential reading for anyone who is interested in the early history of ME and the enormous contribution that was made by Melvin

    MEA literature order form: http://www.meassociation.org.uk/wp-content/uploads/MEA-Order-Form-30-12-14-copy.pdf

    Details about Melvin's book are on page 8
     
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  9. OneWaySurvival

    OneWaySurvival Senior Member

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    Thank you @charles shepherd for the resources and the background you provided on Dr. Melvin Ramsay. He sounds like a truly remarkable man.

    When I cast my vote for my condition to be known as Ramsay's Disease, I mean it as a tribute and honor to a man who faithfully and honorably stood up for very sick and disabled human beings who were disbelieved and were being called hysterical and much worse.

    My friends and family, and even my son's 2nd grade basketball team have recently shown their support to me and other M.E. patients by attempting (and usually successfully) to learn and say the difficult-to-remember-name "Myalgic Encephalomyelitis" in our advocacy campaign known as the KnoW M.E. Challenge. Even so, after the IOM report abruptly suggested the name SEID to replace M.E., every single one of these caring people who I surveyed afterwards have told me they would vote for Ramsay's Disease to be the new name for M.E., even if it is in an unofficial capacity similar to the way ALS is also known as Lou Gehrig's Disease, because it is a name they remember and respect (when I told them about the exemplary Dr. Melvin Ramsay).

    When taking into consideration the international patient community, I don't see how any other name than M.E. or a thoughtful eponym like Ramsay's Disease could possibly be appropriate for this tragically forgotten group of suffering people who deserve a name they can be proud of and one that can help make awareness and fundraising as practical and easily obtainable as possible.

    From what I have learned by even the little I have read about Dr. Ramsay, it seems he would be honored and eager to make things better for M.E. patients with a name that aids in awareness and outreach to the public. It is my belief that with patients adopting the name Ramsay's Disease, it could be a unifying solution that makes the enormous undertaking of pubic education and outreach just a little bit more achievable.
     
    Last edited: Feb 19, 2015
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  10. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    The way I think about that is by thinking about Jonathan Kerr's work on subtyping. No one else has replicated this (although I am not sure whether anyone tried), but he suggests there are subtle differences in patients based on what infection they got. (This could be extended to other triggers such as organophosphate poisoning.)

    He was finding differences in symptoms as well as gene expression. I am not sure whether his or other papers had enough patients to do gene or gene expression studies well, but could it be that there are different symptom complexes?

    When I look at the short descriptions by Ramsay, it's as good a fit for what I have as any other description I've seen (not exact, but a reasonably good fit--most patients aren't "textbook", are they?). I've not read the book.
     
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  11. Sean

    Sean Senior Member

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    Eponymous names are justified in some circumstances, like when we don't have a firm handle on the primary pathology, or etiology, or sometimes even on the diagnostic criteria.

    The visual and aural difference between the names Ramsay Hunt Syndrome and Ramsay's Disease is clear enough to me.

    Also quite strongly against using a first name as well. Some issues there. Ramsay is fine.

    (Plus, as I said on another thread, we would need to check with his family if it is okay to use his name, their family name.)
     
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  12. Sidereal

    Sidereal Senior Member

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    As a community we're somewhat divided on many important issues including the name. A major advantage of campaigning for Ramsay's Disease would be that probably everyone can agree that Dr Melvin Ramsay made an outstanding contribution to this field and had an impeccable track record. Having a historical figure to rally around would be a positive thing for us, I think.

    The term ME (-itis not -opathy) has been rejected by the IOM due to insufficient evidence. I see no benefit in continuing to advocate for it. It should also be remembered that while the term ME is virtually unknown in the US, in the UK it is very well known and probably just as stigmatising as CFS.
     
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  13. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Thanks for this excellent summary of the history.

    Acheson Ramsay Disease sounds good to me.
     
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  14. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I think we should steer well clear of any association with a mythical creature - there are already too many people who think that our illness is a myth! :lol:

    I don't think it's too complicated to have 2 names - many illnesses have this, and there seems little problem in usage. Guillain-Barre syndrome, Prader-Willi syndrome, Ramsay-Hunt syndrome, etc.
     
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  15. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I was keen on ME, until a message prompted me to question the 'myalgic', and this poll seems to confirm that a significant minority does not have myalgia.

    So my preferred name is now definitely one involving Ramsay and/or someone else who has contributed significantly to the recognition of this illness.
     
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  16. altered beast

    altered beast

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    Isnt it about tme that Melvin Ramsay had a proper wikipedia entry? Many I know in the patient community have no awarenes of him.The fact I do is probably more to do with having got ill in the1980s. Before "CFS", at least in the Uk, but still a time of widespread condescension and neglect towards ME.
     
  17. beaker

    beaker ME/cfs 1986

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    It existed in the mid 80s when I got sick.
     
  18. Andrew

    Andrew Senior Member

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    My sentimental favorite is "Ramsay Disease," simply because I most strongly identify his name with ME and because of all the work he did. Unfortunately, it is also a name that will cause us problems. The problem (which I might have mentioned before but I'm having trouble keeping track) is confusion with Ramsay-Hunt syndrome. And the last thing in the world our illness needs is confusion or stumbling blocks. But just imagine the average doctor or reporter searching for information on Ramsay. He is going to get an endless stream of hits for Ramsay-Hunt Syndrome. So what's the next move, search for "ramsay NOT hunt" and hope boolean logic is supported. They will not go to that extra effort. They will look at the list, feel overwhelmed, and decide it's easier to just read the CDC website.

    Our experience has told us again and again that professionals (other than our real experts) are too busy or too lazy to deal with complication in understanding us. And no matter how much we wish it were otherwise, "Ramsay Disease" contributes a layer of complexity that will hurt us. And the last thing we need is one more stumbling block put in the paths of people understanding us.

    For this reason, my favorite version that includes Ramsay's name would be Acheson-Ramsay Disease. Acheson used the term "myalgic encephalomyelitis" before Ramsay did, and so it makes sense historically to put him first. Also, with double-names, the one most people are likely to search on is the first. And Acheson is not the name of another illness.
     
  19. Sean

    Sean Senior Member

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  20. alex3619

    alex3619 Senior Member

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    Not just the UK, though that is the source of most of this. Even here docs often either don't know what that is, or conflate it with chronic fatigue or even a psych disorder.
     

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