Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

(New) Myalgic Encephalomyelitis entry On N.O.R.D site

Discussion in 'Latest ME/CFS Research' started by Kyla, Apr 18, 2016.

  1. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

    Messages:
    721
    Likes:
    4,221
    Canada
    http://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/#.VxVOgS9t86U.twitter

    This was written in consultation with Leonard Jason and is quite good.

    Would have been nice to see some specific info for symptomatic treatments at least (ie for POTS, sleep, pain etc) , as well as maybe suggestions for specific tests like tilt-table/standing test, but quite good overall ...and contains no CBT/GET nonsense :thumbsup:


    Excerpt:
     
    Woolie, GreyOwl, NL93 and 10 others like this.
  2. Justin30

    Justin30 Senior Member

    Messages:
    1,065
    Likes:
    1,272
    Hey,

    Just a thought and it maybe worth an email to rare diseaes and Leonard Jason on the POTS, Sleep and Pain issues you brought up.

    My experience with some groups, Drs and researchers has been positive when emailed. They responded and would look into it and/or would give me reason as to why they wrote down what they did.

    I hope someone takes the time to pursue this so that Dyautonomia is included as part of this as it is a Hallmark Feature of ME and Autonomic Failure.

    Thanks for posting
     
  3. Denise

    Denise Senior Member

    Messages:
    1,094
    Likes:
    3,435
    fwiw - Dr. Jason has indicated (in a couple of articles I believe) that he doesn't find dysautonomia/POTS/OI to be as prevalent as others find it to be.

    Edit to clarify - @Valentijn is correct that I shouldn't lump dysautonomia/POTS/OI together though Dr. Rowe seems to view POTS as a subgroup of OI (http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf) and others view POTS as a subgroup of dysautonomia (http://www.dysautonomiainternational.org/page.php?ID=34).
     
    Last edited: Apr 19, 2016
  4. Valentijn

    Valentijn The Diabolic Logic

    Messages:
    14,103
    Likes:
    44,037
    Which one is it? They're all different entities, with different testing procedures and variations in symptoms. Testing for POTS will miss every other form of OI, and will show low incidence in ME patients if other research showing higher incidence of non-POTS OI is to be believed.
     
    Justin30 likes this.
  5. Justin30

    Justin30 Senior Member

    Messages:
    1,065
    Likes:
    1,272
    Can you please send me a link to Leonard Jason where he states this I would like to read more on him?

    I just dont understand why the CCC Criteria would give it its own subgrouping....not to mention if you have POTS or NMH...then if you have POTS or NMH then you could add 15 symptoms give or take that overlapp with ME. Not to mention that whole subcategory in the CCC document.

    At Least One Symptom from Two of the Following Categories:
    a. Autonomic Manifestations: orthostatic intolerance–neurally me-
    diated hypotenstion (NMH), postural orthostatic tachycardia
    syndrome (POTS), delayed postural hypotension; light-headed-
    ness; extreme pallor; nausea and irritable bowel syndrome; uri-
    nary frequency and bladder dysfunction; palpitations with or
    without cardiac arrhythmias;

    This just goes to show how badly we need research so that people get help.
     
  6. BurnA

    BurnA Senior Member

    Messages:
    1,999
    Likes:
    8,936
    This is a very good article.

    I wouldn't get hung up about treatments or Tilt table testing - he is quite clear:
    Of course the best bit is
    and not a whiff of CBT / GET :thumbsup:
     
    Justin30 likes this.
  7. NL93

    NL93 Senior Member

    Messages:
    139
    Likes:
    845
    The Netherlands
    Amazing to read something about "ME" that is actually about ME, instead of chronic fatigue bullcrap:rolleyes:
     
    Justin30 and halcyon like this.

See more popular forum discussions.

Share This Page