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ME or CFS, what do you call it?

Discussion in 'General ME/CFS Discussion' started by VeganMonkey, Mar 23, 2013.

  1. VeganMonkey

    VeganMonkey Senior Member

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    (I have posted this on another forum as well)

    I read in another forum that some people don't like the name CFS.

    Quote from wiki:

    I have always called it CFS as in my case I didn't develop my illness after a viral infection, but slowly over time since the age of 7 and started getting real trouble at 11. And from there is went down and down over many years.

    I guess that a lot of people with the same symptoms who have ME/CFS could in fact have different illnesses of which the cause hasn't been found yet. I suspect for me it comes from POTS and maybe EDS. that's why I rather don't call it ME in my case.

    Curious about other people's opinions :)
    Allyson likes this.
  2. Ember

    Ember Senior Member

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    ME and CFS have different case definitions. The International Consensus Primer recommends that "patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfil the criteria have ME; those who do not would remain in the more encompassing CFS classification.”
  3. Allyson

    Allyson Senior Member

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    The international consensuc document of 2011 changed the official name to ME
    CFS has very pperjorative overtones and comes nowehre near to dexcribing the breadth or severit of any symptoms

    Many docs react negatively to CFS

    They all LOVE EDS though...same symptoms for many of us,, different name makes all the difference
  4. Ember

    Ember Senior Member

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    The ICC doesn't change any other published definition. Its scope “is limited to criteria of ME and their application.” It recommends instead that “individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.”

    The ICP further clarifies the ICC's separation of ME from CFS:
  5. VeganMonkey

    VeganMonkey Senior Member

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    I must have been lucky to have bumped into many doctors that were serious about my illness. Not so much in the country where I lived before but I heard things are changing for the better there.
    SickOfSickness likes this.
  6. lnester7

    lnester7 Seven

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    ME: I have lessions in brain and PEM.
  7. MishMash

    MishMash *****

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    Ally,
    Thanks for keeping this critical topic alive with your posts. There is literally a hair's breadth difference between the symptoms of EDS and CFS. SO MANY CFSers have some form of connective tissue weakness, it is astounding.

    I found a post on the EDS support website, and I am copying the author's work without disclosing her identity. She carefully addresses the incredible similarities between the two conditions. As Forrest Gump said, CFS and EDS "go together like peas and carrots" (I loved that movie):

    merylg and Allyson like this.
  8. golden

    golden Senior Member

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    Clear Light
    As another thread has taught me, neither M.E. nor C.F.S. should be used because they are both loaded with negative connotations which mean the medical profession are more likely to abuse me.

    Since I was initially diagnosed with M.E. and then it was changed to C.F.S. by a Doctor who preferred that term, I have discovered patients are more vulnerable under a C.F.S. diagnoses as opposed to an M.E. diagnoses which apparently places it firmly as a physical illness although again, this is debatable.

    Its a mess.
    PhoenixDown and Allyson like this.
  9. Allyson

    Allyson Senior Member

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    T
    Thanks for that Mish Mash;

    Yes the symptoms all seem so similar and SO many ME/cfs/fibro people have contacted me saying they have hypermmobility, positive Gorlins' sign or both ( personally and or in the family) that I think this theory has a lot of merit.

    I have contacted EDNF foundation in the past and they are always happy for their posts to be shared and re- posted - which is kind of them - as they are keen do dissiminate knowledge about these conditions. (Mark Martino is the author of many of them... thanks indeed Mark for your generosity.)

    I have also copies your post from here into the main EDS thread
    http://forums.phoenixrising.me/index.php?threads/is-me-due-to-ehlers-danlos-syndrome-stretchy-veins.20351/#post-310872
    in order that the 12,000 odd people who have viewed that thread can follow it too.

    Thanks again,


    Best,
    Ally

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