International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
Discuss the article on the Forums.

Is it correct to say ME is really EDS ?

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by gregf, Nov 19, 2014.

  1. PattyPlum

    PattyPlum

    Messages:
    9
    Likes:
    11
    As you will remember I said "I personally believe", as this is from my own experience of having ME/AD for 31 years (the POTS coming on 8 years ago) and also anecdotally from reading about the experiences of others with POTS and different forms of AD.
     
  2. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,897
    Okay ... just so that we're clear the the diagnostic criteria and relevant experts who wrote them disagree with your personal opinion :p I'm also fairly sure the 2-day CPET has been attempted with OI patients on a small/trial basis, and they don't share the distinctive ME drop in performance on day 2.
     
    Mij and merylg like this.
  3. PattyPlum

    PattyPlum

    Messages:
    9
    Likes:
    11
    I said it was my personal opinion from the outset and that did not mislead anyone. I was basing this upon my own experiences and anecdotally from the scores of people I have spoken to about their own experiences.. I am exercise intolerant and also have post exertional malaise and that has been the situation for decades. I have always had issues two days after any exertion.

    I do wonder how many other people do have POTS/EDS and don't know it? I didn't until this recent years. The dysautonomia is greatly underestimated by many people with ME/CFS. Having got my own diagnoses many other people have sought out and managed to get their own.

    Having read a lot of diagnostic criteria about both conditions, this information and study results can vary very much depending on the approach to each research study, the goals/aims and who pays the piper. As a scientist myself, I know this very well to be the case. Read a 1000 scientific papers and another 1000 will dispute their claims. I don't have a closed mind, I like to explore all the possibilities and having experienced these things for myself, I feel pretty sure that this will come out more in due course.

    :p
     
    merylg likes this.
  4. EtherSpin

    EtherSpin Senior Member

    Messages:
    197
    Likes:
    282
    Melbourne , Australia
    similar make up here. my CFS presented very textbook, have pretty much all the criteria (where only some are needed) by most different clinical sets - the apparent auto immunity , herpes family stuff, nerve damage from one of those etc - it was only mapping out seemingly unconnected but significant problems in my siblings/cousins, aunts, uncles and a parent that led to EDS diagnosis . I wanted to find a link in case it was HHV-6 or some kind of virus that can pass along in chromosomes or similar but specialists were able to see a clear EDS link and then along comes on of my 2 children with more textbook EDS symptoms than myself or any of the rest of us.

    I'm 99% sure its just a predisposing factor to the disease state that is ME/CFS and much like environmental/lifestyle and geographical factors exist.

    I see PEM was mentioned in thread - PEM is 100% present , it baffles me and its one of those things I find almost impossible to fully accept , especially when the wait for the brick wall is sometimes 48+ hours.
     
    Hutan, merylg and justy like this.
  5. wastwater

    wastwater Senior Member

    Messages:
    1,073
    Likes:
    726
    uk
    I wonder what causes the genetic mutation in the first place and is EDS on the increase
     
  6. EtherSpin

    EtherSpin Senior Member

    Messages:
    197
    Likes:
    282
    Melbourne , Australia
    these days I lose track of 3/4 of what I read between reading for my daughter (EDS) , self (CFS,POTS,EDS) and the cog fog but I read something by a researcher on the Vascular EDS type, the genes are known for that type and he was saying a drug would likely be ready in 5 years as there are particular collagen factors in short supply in that type. it would be more than great if the other types also just had a shortage of a particular enzyme rather than garbled instructions as to how to form a proper piece of collagen frame
     
    sillysocks84 likes this.

See more popular forum discussions.

Share This Page