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MEA website poll for March: Change of name for CFS and ME to SEID?

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Mar 1, 2015.

  1. charles shepherd

    charles shepherd Senior Member

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    MAY BE REPOSTED

    As we are wanting to assess UK opinion on the proposal to change the name of CFS and ME to SEID, we are restricting this poll to UK residents

    Please vote via the Home Page on the MEA website:
    http://www.meassociation.org.uk

    Why our latest website poll is asking about a new name for the illness | 1 March 2015

    The U.S. Institute of Medicine (IoM) published a report in February which made a number of recommendations regarding the name, clinical definition and diagnosis of ME/CFS.

    With regard to the name, the report recommended that CFS and ME should be replaced by a completely new name – systemic exertion intolerance disease (SEID).

    The IoM did so because they concluded that CFS is no longer suitable and that ME (as myalgic encephalomyelitis) is not an accurate term. This is because some people with ME do not have myalgia (= muscle pain) and what neurologists understand as encephalomyelitis (= a widespread and significant inflammation involving both the brain and spinal cord) has not been proven.

    The IoM therefore recommended a new name for both CFS and ME – one that includes the widespread nature of symptoms (= systemic), the presence of post-exertional symptomatology (= exertion intolerance), and the acknowledgement that is is a real illness with a pathological basis to it (hence disease).

    So far, public opinion on the new name on internet discussion forums, including MEA Facebook, has been very mixed. Many people have expressed negative or very negative opinions. Others have given a cautious welcome the new name.

    The MEA position is that achieving a consensus on a new name should have involved a much wider group of international health professionals and that the patient community should have been asked for their views before any firm recommendation was made. We have also stated that we believe that further consideration should be given to the name myalgic encephalopathy – which retains the letters ME and cannot be challenged on the grounds of pathological inaccuracy.

    However, the report has been published, a firm recommendation on a new name has been made, and it seems likely that the new name will be used – certainly in North America.

    So the purpose of this month’s MEA website survey is to find out what people with ME/CFS in the UK think about the new name. This will be important if moves are made by health professionals here in the UK to replace both CFS and ME with SEID.

    So please give this question some thought and let us have your views.


    VOTES SO FAR - after 10 hours:

    The MEA Quick Survey

    • Should CFS and/or ME be renamed Systemic Exertion Intolerance Disease (SEID) as recommended in the U.S. Institute of Medicine Report?
      • Yes - but for CFS only (13%, 9 Votes)

      • Yes - but for ME only (1%, 1 Votes)

      • Yes - for CFS and ME (17%, 12 Votes)

      • Not sure (13%, 9 Votes)

      • No opinion (0%, 0 Votes)

      • No - do not like SEID (56%, 39 Votes)


        Total Voters: 70
     
    oceiv likes this.
  2. Sasha

    Sasha Fine, thank you

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    @charles shepherd - is it normal for the US to have one name for a particular disease and the UK another? Also wondering whether there would be consequences (adverse or positive) of having different names.
     
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  3. charles shepherd

    charles shepherd Senior Member

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    Sasha

    I wouldn't say it was 'normal' but it does sometimes happen

    As you know, CFIDS has been used quite widely in America - but this name never really caught on here in the UK

    Over in Japan, they used the term low natural killer cell syndrome at one point

    This is a disease of many names and until we have a better understanding of the pathology and sub-grouping I suspect that the debate/disagreement/confusion will continue!

    I don't think there would be any serious consequences if the US medical establishment/powers that be decided to go with SEID and the UK remained with the messy compromise of patients choosing ME, doctors choosing CFS, or possibly SEID, and some of us going for ME/CFS.
     
    Sasha likes this.
  4. Sasha

    Sasha Fine, thank you

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    I think the US patients now have a powerful tool in the IOM report with which to start pressuring the NIH for research funding, respect and so on. If SEID is adopted as the name and the US govt starts treating the disease seriously, I wonder if we in the UK would miss out if we were using another name.

    In two or three years I hope this would be beside the point anyway, and that we'd have progressed to the point where research indicates a more mechanism-based name.
     
    Valentijn and SOC like this.
  5. charles shepherd

    charles shepherd Senior Member

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    Current voting after just under 24 hours:

    The MEA Quick Survey

    • Should CFS and/or ME be renamed Systemic Exertion Intolerance Disease (SEID) as recommended in the U.S. Institute of Medicine Report?
      • Yes - but for CFS only (14%, 31 Votes)

      • Yes - but for ME only (5%, 11 Votes)

      • Yes - for CFS and ME (14%, 30 Votes)

      • Not sure (9%, 20 Votes)

      • No opinion (1%, 3 Votes)

      • No - do not like SEID (57%, 122 Votes)


        Total Voters: 217
     
    oceiv likes this.
  6. SOC

    SOC

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    Not exactly. SEID is not intended as a one-to-one replacement for what is now called CFS or CFS/ME. It is the name for the condition given by the diagnosis -- which includes PEM. It is NOT just a name change/replacement.

    I don't think anyone wants the UK medical establishment to simply replace the names CFS and ME with SEID while maintaining their incredibly sloppy diagnosis methods. The Oxford definition of CFS most certainly does not qualify as a SEID diagnosis. People with an Oxford (or Fukuda, for that matter) CFS diagnosis should not automatically get a name change to SEID. They should be reassessed based on the SEID criteria. If they don't fit the SEID criteria, then they still have CFS by Oxford (or Fukuda).

    So are you asking if UK patients simply want to change the name from CFS or ME to SEID? That would be bad for everyone by tainting our new diagnosis criteria in the same way the UK medical establishment tainted ME by misusing that name for Oxford-defined CFS.

    I don't get to vote since I'm not a UK citizen, but I can say here that I'd rather the UK medical establishment kept the names they're using now rather than do a one-to-one name replacement without using the correct diagnosis criteria.
     
    Valentijn, Cheshire and Sasha like this.
  7. charles shepherd

    charles shepherd Senior Member

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    I can see your points but 'out in the real world' here in the UK the situation is that:

    a) doctors (including myself) don't normally make use of the Oxford criteria to make a clinical diagnosis. Most doctors make a pragmatic judgement based on their clinical judgement with reference to a number of diagnostic criteria - most of which are research based (including Fukuda and Oxford) and are not always suitable for clinical use.

    b) there is a lot of discussion (hence the number of people voting in our poll) amongst patients and doctors as to whether the UK should replace both CFS and ME with SEID. In fact, one well known doctor said on the BBC this week that CFS was now called SEID here in the UK!

    So I still think our poll, which can only use a limited number of words and does nt have the capacity to include multiple choices or questions, is a useful measure of public opinion in the current circumstances
     
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  8. SOC

    SOC

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    My point remains the same -- SEID is NOT just a name-change. SEID is a diagnosis based on specific criteria, most importantly the presence of PEM.

    As a patient population, we are suffering because too many people are grouped under the heading "CFS" who don't have the serious medical condition we have. It allows frauds to claim treatments and cures for our condition because they are (somewhat) effective for people who are tired. We cannot let this new diagnosis -- the correct diagnosis emphasizing PEM -- be watered down by grandfathering in everyone who was previously diagnosed with CFS. We'll be no better off than we are now.

    It's not just about the name; it's about the proper identification of the disease.
     
    Sasha likes this.

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