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Absolutely right. We need a lot more work on operationalizing criteria. We are nowhere near where we should be on this. It’s essential for good, replicable research.

I’m just going to say that, here on the US side, there is a lot of disagreement about the history of this disease. I just read something a few minutes ago that was written about the history and I wanted to cry. (It was in ME-pedia and I know that, according to Wiki rules I shouls have fixed it...

@Michiel Tack , I don’t think that it would be appropriate for me to sign since I am involved in other areas of the Values and Policies initiative, but it’s a good statement and I applaud you for creating it. I’m always happy when people treat new scientific hypotheses with skepticism and caution.

Thanks for giving great context for your suggestions, @Trish . I completely agree about anyone in leadership of an organization giving suggestions about treatments. I just don’t want the leadership of an organization to be unable to express an opinion separate from the organization’s official...

Good job, @Michiel Tack ! I would respectfully disagree with your 2 additional statements, @Trish . Taking the second first, MEpedia has all of the strengths and weaknesses of all Wikis. And like all other Wikis, no one should take the information as the final word. And I don’t believe that...

It has been posted repeatedly. Vastag is the husband of the co-founder of ME Action. I think that the difficulty of obtaining diagnoses may contribute to the difficulty in finding people who have been sick for less than 5 years. By the time that people are diagnosed, they are often outside of...

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...

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...

It should be posted on YouTube soon, Nasim. I’ll keep my eyes open.

In the interest of fairness, I think that NIH has made a contribution to the forward motion with this disease. They haven’t done enough by a long shot, but Maureen Hanson heads one of the 3 cooperative research centers and others in that room have NIH funding as well. Dr. Younger wasn’t able to...

My general statement about NIH and the research community is “They broke in; they need to fix it.” It’s time for unusual urgency.

I think that different researchers, even within the same network have different theories. You could see that at the conference. And none of the theories have been proven yet, so it’s a question of putting all theories on the table and doing the work to see what hold true. We just don’t know yet.

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.

I thought that Dr. Hanson’s talk was absolutely brilliant - one of the best that I have ever heard. Just wanted to point out that, as she said, the low percentage of NIH proposals that are funded is across the board - not just for ME/CFS grants. In fact, ME/CFS proposals are funded at a slightly...

Totally my own experience, but I took Kutapressin back in the early ‘90s also. Most of my support group friends were Dr Cheney’s patients and they seemed, anecdotally, to be having good results. I am a fairly skeptical person, but two doctors in TX had published a paper on it which I read...

You are right about NIH funding a percentage of applications, but that is by Institute rather than by disease. So the number of ME studies funded by each participating Institute can increase if good applications are submitted. And for NIH, “good” usually means preliminary data like the kind...

Looks like Dr. Komaroff’s article is reaching a large readership. https://www.healthrising.org/blog/2019/07/11/jama-chronic-fatigue-syndrome-article-tony-komaroff-unifying-model/

I’m wondering - taking into account that all of the statistics for this disease are fairly unreliable since studies are small, definitions differ, etc., which statistics do you all consider the most reliable? I am always uncomfortable quoting almost all of them. I do believe, for example, that...

Copied I’m wondering - taking into account that all of the statistics for this disease are fairly unreliable since studies are small, definitions differ, etc., which statistics do you all consider the most reliable? I am always uncomfortable quoting almost all of them. I do believe, for...

That has pretty much been Dr. Komaroff’s message for the past 30 years. I remember back in the ‘90s when he delivered that message to 1/4 of the clinicians in California at once. Still hanging in to get the message out.