Chronic Fatigue Syndrome Research Gains Funding, And Controversy

[Denise]

Another article by Miriam Tucker:

http://www.npr.org/sections/health-...ndrome-research-gains-funding-and-controversy

(Thank you Miriam!)

 

[Valentijn]

Another article by Miriam Tucker:

http://www.npr.org/sections/health-...ndrome-research-gains-funding-and-controversy

The comments are crap so far, so I added a brief "it's real" comment (objective 2-day CPET, TTT, not "fatigue").

You have to be logged into their site to comment or vote up or down, but it's easy to do via Disqus. They'll send confirmation email, then you can make up a name, etc, and you're in.

 

[adreno]

Looks good!

 

[Simon]

Patients have long criticized the NIH for what they see as extreme underfunding of research into the illness, with the annual amount hovering around $5 million or $6 million for the past several years.

That's about to change, according to Dr. Francis Collins, director of the NIH. "It will be substantially greater than the current five or six million a year," he said in an interview with Shots. "We are going to ramp this up."

Sound good!

 

[Riley]

Can I just say how wonderful it is to have an appropriate photo! No pictures of a man in a suit yawning at his desk here!

 

[RivkaRivka]

The comments ARE bad, aren't they? Why do people hate us ME patients so much? That is so concerning.

I did pitch my personal essay about last week's great news to the NPR "Shots" section editors, but I'm so glad they instead asked Miriam Tucker to write an article.

By the way, the comments coming in from my essay (which got accepted by the NPR Boston affiliate, WBUR, a great radio station) are heart breaking. And none have spoken badly about the patients. The essay is here: http://commonhealth.wbur.org/2015/11/nih-chronic-fatigue-syndrome

 

[*GG*]

Yes, another good read!

GG

 

[CFS_for_19_years]

I'm too sick to post to the trolls and misguided doctors there. If anyone cares to post up this image of what exercise does to us, I think it says a lot...or not.....there are some real a**holes with MD after their names who appear to know everything.

http://static.www.bmj.com/sites/def...tachments/2015/01/Light A, et al 2009 (1).jpg

I love supplying ammo.

 

[Kati]

I'm too sick to post to the trolls and misguided doctors there. If anyone cares to post up this image of what exercise does to us, I think it says a lot...or not.....there are some real a**holes with MD after their names who appear to know everything.

http://static.www.bmj.com/sites/default/files/response_attachments/2015/01/Light A, et al 2009 (1).jpg

I love supplying ammo.View attachment 13485

@CFS_for_19_years it just happens I can use my twitter skills but I hate having to look for stuff. So your posts are much appreciated. Thank you. It takes a village...

 

[voner]

NIH director Francis Collins was on the Charlie Rose PBS show yesterday evening and he discussed his strong desire to find out what's going on in ME/CFS, etc. it appeared to me that he had a strong personal investment in pushing for more ME/CFS research. my memory is poor and I've already forgotten some of what he had to say, but he spoke for a few minutes. he didn't get everything right about the symptoms of ME/CFS, but his intent to push hard for a significant research program on ME/CFS came through loud and clear. when he described ME/CFS patients, he cited a viral trigger and how severely some patients are affected – bedridden, etc. he did mention PEM and exercise intolerance. he mentioned how valuable it would be to discover and understand exactly what is "fatigue", because it could be applied to other illnesses that are fatiguing also.

a side tidbit was that I thought it was interesting also that Charlie Rose asked him about his recent statements about "chronic fatigue", Dr. Collins did not bring it up on his own.

I searched the Internet and I could not find any place where the video of him talking about ME/CFS was posted, yet.

it certainly will be interesting to see who gets funded and what gets funded

 

[Denise]

NIH director Francis Collins was on the Charlie Rose PBS show yesterday evening and he discussed his strong desire to find out what's going on in ME/CFS, etc. it appeared to me that he had a syrong personal investment in pushing for more ME/CFS research. my memory is poor and I've already forgotten some of what he had to say, but he spoke for a few minutes. .....

I very much look forward to seeing this!

 

[Effi]

he mentioned how valuable it would be to discover and understand exactly what is "fatigue", because it could be applied to other illnesses that are fatiguing also

I have seen this statement a couple of times... and it doesn't give me much hope tbh. Fatigue is a symptom in every disease. It's a normal bodily reaction. I don't think looking into a vague term like 'fatigue' would clear anything up...

 

[voner]

@Jonathan Edwards, do you think this news about the NIH pushing to increase ME/CFS research will prompt any of the European researchers to apply for funding to the NIH?

 

[dancer]

I agree that it's been frustrating to see ME/CFS conflated with "fatigue" - but I wonder if there might be some strategy here. To overcome the ridiculous stigma (that still seems to pervade medicine) that ME/CFS isn't real or isn't serious and doesn't deserve research funding....the mention that studying fatigue will also help those with cancer (who experience debilitating fatigue) or hepatitis, or MS, other already acknowledged illnesses may be a way to rally the support for funding for ME/CFS. I'm not sure, but that could be an angle to look at.

 

[voner]

I have seen this statement a couple of times... and it doesn't give me much hope tbh. Fatigue is a symptom in every disease. It's a normal bodily reaction. I don't think looking into a vague term like 'fatigue' would clear anything up...

also, @dancer

I had similar feelings to you about his speculation about "fatigue", I kind of cringed when he started talking about fatigue. sure seems the emphasis on "fatigue" is a artifact of the unfortunate naming of this disease in the usa, "chronic fatigue syndrome". on the more optimistic side, perhaps Dr. light's work will get further funded and help tie some of the pieces of the puzzle together. if I remember right, Dr. Collins did follow up a statement about fatigue with the mention of PEM and exercise intolerance. my take on the statements about fatigue was that he was partially trying to show how the research into ME/CFS could benefit The understanding of other diseases.

as I said, my overall take on what he had to say was very positive. He was very strong in his statement about how much he desired to unravel the quandary of ME/CFS .

 

[voner]

A couple other tidbits I remember from the interview. Dr. Collins said that his overall budget is $30 billion a year. He said that whereas one out of three research request for funding used to get funded, now days one out of six get funded.

$30 billion a year.

 

[Ellie_Finesse]

Very well put @Valentijn I have bookmarked it and will show my family, it might help them understand more. Trying to explain something so complex to them is extremely difficult. I can never quite find the right words!

 

[Denise]

Today I found these three sites that mention NIH changes re ME:

http://www.clinicaladvisor.com/rheu...itis-chronic-fatigue-syndrome/article/451633/

https://www.pharmacist.com/nih-takes-action-bolster-research-mecfs

http://www.neurologyadvisor.com/sle...drome-nih-research-initiative/article/452044/

 

[ahimsa]

NIH director Francis Collins was on the Charlie Rose PBS show yesterday evening and he discussed his strong desire to find out what's going on in ME/CFS, etc.
...

Thanks for posting about the show!

I saw a tweet from Dr. Collins about his interview with Charlie Rose. I don't normally watch that show but I decided I should record it, hoping that he might mention ME/CFS.

It turns out that my PBS station airs this show at noon on the following day. Since it's not quite 11:30 AM in my time zone, the interview has not yet been shown. So it's nice to get your preview!

Edited - Between last night and today I forgot the time. Show airs at 1:00 PM, not Noon.

 

[ahimsa]

By the way, thanks to @Valentijn (and any others whose user names I might not recognize) for posting comments on Miriam Tucker's article on the NPR website.