1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 18th March 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

New Yorker: A Town for People with Chronic Fatigue Syndrome

Discussion in 'General ME/CFS news' started by John Mac, Sep 3, 2019.

  1. John Mac

    John Mac Senior Member (Voting Rights)

    Messages:
    905
  2. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    6,237
    Location:
    Norway
    I've only heard bits and pieces of the story about Ampligen. Nice to read such an account in one article.
     
  3. ladycatlover

    ladycatlover Senior Member (Voting Rights)

    Messages:
    3,702
    Location:
    Liverpool, UK
    So glad to see my friend Mary Schweitzer mentioned. She came over to UK for one of the early Invest in ME Research conferences.

    I was outside the Dept of Health at that time, as part of demo.

    So happy to meet up with Mary afterwards - she came back to our daughter's home with us, and we all had fish and chips. And sat in the garden.

    [​IMG]Me at Number 10 by Maggie, on Flickr
     
    Last edited: Sep 4, 2019
    MeSci, Hutan, erin and 18 others like this.
  4. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    6,237
    Location:
    Norway
  5. ladycatlover

    ladycatlover Senior Member (Voting Rights)

    Messages:
    3,702
    Location:
    Liverpool, UK
    Here's a pic of us together. I live in hope that Mary gets enough help from Ampligen to come back to UK again so we can meet again.

    [​IMG]Mary and me by Maggie, on Flickr
     
    MeSci, Hutan, MarcNotMark and 23 others like this.
  6. Seven

    Seven Senior Member (Voting Rights)

    Messages:
    186
    I wish one could post comments!
     
  7. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    6,237
    Location:
    Norway
    ladycatlover, Hutan, Louie41 and 5 others like this.
  8. Denise

    Denise Senior Member (Voting Rights)

    Messages:
    470
    I am puzzled that the disease is referred to as "C.F.S" and chronic-fatigue syndrome throughout the article....
     
  9. Wilhelmina Jenkins

    Wilhelmina Jenkins Senior Member (Voting Rights)

    Messages:
    220
    Location:
    Atlanta, GA, USA
    That’s one of the things that made the article seem very old to me instead of one that was recently written. And he didn’t discuss any of the newer developments in the field. It felt like an article from the ‘90s. But his personal experience in his pursuit of Ampligen was interesting.
     
    ladycatlover, Hutan, Louie41 and 5 others like this.
  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,573
    Location:
    UK
    the whole 'history' in the article is imo very 'US centric' and a bit distorted; as though there was no history/name for the disease before its 'appearance' in the US. But this 'rewriting' of ME history started a while ago and is ongoing. Even with the resurgence of using the name M.E. often it is stated that it is the 'new' name to replace CFS whereas it is in fact the other way around.
     
  11. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    4,602
    That surprised me too. It seemed to show no awareness of the history of ME. Things that don't happen in the US have never happened.
     
  12. Wilhelmina Jenkins

    Wilhelmina Jenkins Senior Member (Voting Rights)

    Messages:
    220
    Location:
    Atlanta, GA, USA
    Without a doubt, it was US-centric. I don’t think that is necessarily a bad thing, because the timeline of this disease is very different here in the US than it is in the UK.

    Speaking as someone who became ill with this disease in 1983 in Washington, DC, there was no awareness of ME among doctors here. We knew in the late ‘80s that you all had the disease ME, but it took a little time and better technology for communication before it was clear that we were all on the same page.

    I wish that, when people get very excited about ME not being CFS, they would consider that we very well may be talking about the same disease diagnosed in different countries at different times with different criteria.

    I have yet to see a set of criteria that would exclude me, but my doctors, and most US doctors, diagnose us with CFS. It’s important to work for better criteria for this disease, but it’s not okay to throw patients under the bus because of the name or criteria that their doctors chose.
     
    bobbler, Hutan, MarcNotMark and 16 others like this.
  13. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    4,602
    @Wilhelmina Jenkins I am not entirely clear as to the point which you are seeking to make.

    There was no prior attempt in this thread to distinguish between the substance of CFS and ME, and no-one was becoming "excited" about it. That appears to be the distinction you are making by supporting the proposition that CFS began in the early to mid 1980's. If the illnesses are the same there could be only one timeline, though it may incorporate different information for different locations. If they are different you are at liberty to state a date of your choice for CFS.
     
    Wonko likes this.
  14. Wilhelmina Jenkins

    Wilhelmina Jenkins Senior Member (Voting Rights)

    Messages:
    220
    Location:
    Atlanta, GA, USA
    The issue was about the paper being US-centric. I was agreeing and just discussing the ramifications of the parallel timelines in the UK and here.

    I do believe that it is the same disease, but many, probably most, people in the US have not even heard of ME. When we look at the history of this disease, we just need to consider that different things were going on in different locations. That’s all I’m saying.
     
    Hutan, Snow Leopard, chrisb and 3 others like this.

Share This Page