Blog: Occupy ME, "I Want To Believe Dr. Collins, But I Don’t"

Andy

Andy

Retired committee member
Dr. Francis Collins, Director of the National Institutes of Health, spoke to the ME community earlier this month at the meeting on Accelerating Research on ME/CFS. For the ten minutes he was present, Dr. Collins said a lot of nice things. I sincerely want to believe it all.

But I don’t.

I want to believe that the meeting is “a real milestone.” I want to believe that the Trans-NIH ME/CFS Working Group will “bring forward ideas about new projects, new kinds of funding,” and that those ideas will have Dr. Collins’s “strong personal support” and thus become reality.

Except Dr. Collins’s remarks this month were strikingly similar, in many ways, to what he said exactly eight years ago at NIH’s State of the Knowledge Workshop on ME/CFS Research. In 2011, Dr. Collins pointed out that “we really need to understand a lot more about what subsets might exist.” He said there had been “hopeful presentations” about approaches coming out of new technologies. He expected “new ideas” to come out of that workshop and that “those new ideas might suggest new research.” Subsets, the promise of new technologies, and new ideas. Dr. Collins hit all these same notes in his 2019 remarks.
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http://occupyme.net/2019/04/17/i-want-to-believe-dr-collins-but-i-dont/
 
Let me play devil's advocate and try to think like the NIH

  1. Every patient group wants more $$$$ for its illness
  2. There are lots of horrible illnesses out there
  3. Is there a chance of big breakthrough investing in ME soon? (ie not in 50 years)
  4. We're still very much in the exploratory stage of ME research (yes, after all these years)...No easy, cheap biomarker available.
  5. aggravation from some ME patients (& Janet Dafoe)...nothing is good enough for them (remember people calling for the head of Brian Wallitt?)
  6. Lots of ME patients look relatively well (many don't)
  7. Aren't ME patients a bunch of privileged snowflakes who can't hack it in the modern world?
Ok, I've gone a bit Rod Liddle but you get the point...
 
Estherbot said:
Let me play devil's advocate and try to think like the NIH

  1. Every patient group wants more $$$$ for its illness
  2. There are lots of horrible illnesses out there
  3. Is there a chance of big breakthrough investing in ME soon? (ie not in 50 years)
  4. We're still very much in the exploratory stage of ME research (yes, after all these years)...No easy, cheap biomarker available.
  5. aggravation from some ME patients (& Janet Dafoe)...nothing is good enough for them (remember people calling for the head of Brian Wallitt?)
  6. Lots of ME patients look relatively well (many don't)
  7. Aren't ME patients a bunch of privileged snowflakes who can't hack it in the modern world?
Ok, I've gone a bit Rod Liddle but you get the point...
Click to expand...
Gonna play along with this devil's advocate game...

I suspect that an important reason why scientists and the NIH aren't keen on investing in ME/CFS research is that they think the condition is too heterogeneous to find something. I fear that they see it as a collection of all people with severe fatigue and disability without a biomedical explanation and that this might just as well represent a collection of dozens of rare or yet unknown diseases. If that is true (and this could be the case) then it might be a bad investment to search for biomedical abnormalities that differentiate this group of patients from healthy controls or other illnesses.
 
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I didn't read the link but i did read the quote.
I very much agree, i have said exactly this in a couple threads on S4ME, they are creating a fake chicken or the egg problem to get themselves off the hook. They admit the reality of ME but invent excuses as to why they "can't" do anything about it then expect us to believe their alternative facts.
 
I’ve never spoken to Francis Collins, who heads the National Institutes of Health. He comes across as a decent, caring man, and by all accounts he is. That’s certainly how he came across in his remarks earlier this month at the NIH’s meeting on ME/CFS research.

But anyone who runs the NIH must play politics as well as direct the country’s medical research enterprise. And there are obviously differences of opinion as to whether the current limits on NIH funding for ME/CFS arise because of scientific concerns or the politics of the illness. The government claims the first. The patient/advocacy community disputes that argument, and so do scientists investigating the illness.
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http://www.virology.ws/2019/04/23/trial-by-error-jennie-spotila-on-collins-nih-talk/
 
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