Article on the New Yorker Website about Incline Village and Ampligen. https://www.newyorker.com/culture/personal-history/a-town-for-people-with-chronic-fatigue
I've only heard bits and pieces of the story about Ampligen. Nice to read such an account in one article.
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. Me at Number 10 by Maggie, on Flickr
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. Mary and me by Maggie, on Flickr
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I am puzzled that the disease is referred to as "C.F.S" and chronic-fatigue syndrome throughout the article....
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.
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.
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.
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.
@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.
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.
