Discussion in 'General ME/CFS News' started by Andy, Apr 17, 2019 at 1:18 PM.
Actions speak louder than words.
Repeating empty words undermines confidence and trust.
Collins has little left in the ME community.
Let me play devil's advocate and try to think like the NIH
Every patient group wants more $$$$ for its illness
There are lots of horrible illnesses out there
Is there a chance of big breakthrough investing in ME soon? (ie not in 50 years)
We're still very much in the exploratory stage of ME research (yes, after all these years)...No easy, cheap biomarker available.
aggravation from some ME patients (& Janet Dafoe)...nothing is good enough for them (remember people calling for the head of Brian Wallitt?)
Lots of ME patients look relatively well (many don't)
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...
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.
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.
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