NIH Telebriefing re ME/CFS - July 10 (open to international participation)

[Gemini]

When I was there in April-May, the team was considering adding muscle biopsies and 2-day CPET. I gave them access to my 2-day CPET results, and the ME/CFS researchers were talking to the CPET expert at NIH about it.

So good to hear you contributed to the interest in the 2-day CPET.

Long timers (like me) remember research involving muscle biopsies two decades ago:

Electron-microscopic investigation of muscle mitochondria in chronic fatigue syndrome.
https://www.ncbi.nlm.nih.gov/pubmed/8587699

Wonder if NIH has newer and/or different techniques for such biopsies?

 

[Gemini]

I mentioned enteroviruses to him when I was there and said a few researchers suspected them. So he's aware of this idea. We didn't talk about biopsies at all.

Thanks so much @viggster for mentioning enteroviruses!

Interestingly research in 1991 from London considered persistent virus infection in muscle:

Persistent virus infection of muscle in post viral fatigue syndrome
https://www.ncbi.nlm.nih.gov/pubmed/1665379

and again in 2003 from Imperial College, London associating "enteroviruses" with muscle dysfunction:

Enterovirus-related metabolic myopathy: a post viral fatigue syndrome
https://www.ncbi.nlm.nih.gov/pubmed/14570830
CONCLUSIONS:
There is an association between abnormal lactate response to exercise, reflecting impaired muscle energy metabolism, and the presence of enterovirus sequences in muscle in a proportion of CFS patients.

Would NIH consider replicating this work with its new technologies...besides, muscle biopsies as opposed to stomach biopsies may be a bit easier to perform!

 

[Mary]

Not just clueless, but wilfully noncommittal.

Yes but he sounds really bored and is not willing to do anything about it.

Koroshetz sounded extremely bored and noncommittal. It was depressing listening to him. He was not moved at all by pleas for more funding, just kept saying the same things over and over in a monotone. I'm going to write somebody a letter, haven't decided who yet. But there's no excuse, none, for the almost non-existent level of funding for ME/CFS. If this were ebola or Zika, you can bet they would be drowning in money, because they think it could happen to them.

 

[Nickster]

Koroshetz sounded extremely bored and noncommittal. It was depressing listening to him. He was not moved at all by pleas for more funding, just kept saying the same things over and over in a monotone. I'm going to write somebody a letter, haven't decided who yet. But there's no excuse, none, for the almost non-existent level of funding for ME/CFS. If this were ebola or Zika, you can bet they would be drowning in money, because they think it could happen to them.

@Mary Watch out NIH because when Mary puts her mind to something she gets it done. It might take awhile to write it up, but, it will be thought out and accurate. You go Mary!

 

[Mary]

@Mary Watch out NIH because when Mary puts her mind to something she gets it done. It might take awhile to write it up, but, it will be thought out and accurate. You go Mary!

Thanks, @Nickster! Oh dear, now I have to do it! Seriously though, I am going to. I'd actually written something up for a comment at the briefing (was very nervous about speaking, actually) but they never got to me, but it will be the basis for something I write. The people who were able to lodge their comments were extremely articulate, really impressive.