#MEAction: NIH Update: Collins Will Meet With #MEAction Representatives!

Oh God one in particular, not content with one tweet, has to be multiple tweets. The person is everywhere I go. It's a wonder he hasn't found his way in here!!!

 

Maybe I’m just missing things but I don’t see any bad tweets replying to the NIH tweet?

 

Well I think saying who gives ME Action the right to represent ME patients for one and the gif screaming Lies is hardly friendly...if we were all singing from the same hymn sheet it would look better but we are not. Right now we urgently need Research dollars, that should be the focus in the replies to his tweets imo.

 

Ah I thought people meant replies that were anti ME/CFS but you mean tweets that just aren’t helpful to the cause. That makes more sense and yes I agree they aren’t helpful.

I do have issues with ME actions style of advocacy but I agree that that is not the place to voice those concerns.

 

Regarding the tweet claim that we are getting less than 1% of what we should, that’s not correct. Dimmock and others calculated a figure of $186 million or something like that. 1% of that is $2 million.

 

https://twitter.com/user/status/1071817984291815424

 

I have zero faith in Koroshetz for some reason, he always seems evasive.

 

That reminds me: Canadian activists are looking for 80 something million dollars. I read in a National ME/FM Action Network publication recently that the CIHR gave $800,000,000 to grants last year. Looking for more than 10% of the budget, especially given how few researchers there are in Canada, is looking for too much in my mind.

 

That's probably mine What I meant is overall. Only the US actually funds biomedical research, the rest of the world combines for a fraction of what the NIH funds. The US represents 20% of the world's economy. So 80% of the world's economy barely funds biomedical research in ME. And the NIH funding was much lower than it currently is for a long time, with significant amounts wasted on nonsense research.

The disease has been recognized since 1969. If we take total worldwide disease burden and sum up the proportion of adequate research funding this disease received during that time, I think 1% is even stretching it.

Of course that means the NIH is punching way above everyone else and should not be expected to make up for neglect in the rest of the world, but it remains the overall picture. It just explains why there haven't been any outstanding results. Most diseases aren't fully-funded based on total burden, but 30-40% will get you the same results as fully-funded within 3 years whereas 1% will take several decades.

 

If one replies to the head of the NIH, a lot of people would read that as applying to the NIH budget:
https://twitter.com/user/status/1071537610592608257


I agree that the worldwide situation is disappointing, though I think the relatively low level that has historically been raised privately hasn't helped, though it has been great to see big improvements in this area in the last decade or so.

 

“but 30-40% will get you the same results as fully-funded within 3 years whereas 1% will take several decades.”

Personally, I think the pace of progress with one percent funding is virtually zero. It is not enough for a researcher to make a career decision to work in this field, and it is not enough for a critical mass of researchers to form, compete, inspire and exchange ideas with each other.
Just my two cent’s worth.

 

#MEAction:
#MEAction met with NIH director - Here's what happened

#MEAction appreciates that Dr. Collins, Dr. Koroshetz, Dr. Nath, and NIH program staff took the time to meet with us. We felt that there were some good discussions on opportunities to incrementally advance the field that will be important to pursue. However, it was evident that NIH leadership is not yet ready to significantly accelerate NIH’s approach and commitment to ME because they feel the science is not ready, and that the field lacks the needed researchers and high-quality grant applications. NIH reaffirmed its approach of focusing on foundational research and using the Collaborative Research Centers to create what Dr. Koroshetz has previously referred to as “a seed” to grow the field over time.

We strongly disagree with this approach. We see significant opportunities in both basic research and treatment trials to rapidly transform ME research, drug development, and clinical care. Achieving this requires a much stronger and more strategic commitment from NIH, one that is focused on delivering outcomes for patients as quickly as possible.

 

Has this email from ME Action gone live as I didn't receive it?

 

Saw it in a tweet from MEAction, email will probably be sent soon
https://twitter.com/user/status/1074665675027824640

 

I don't really think it's a good idea to continue lobbying the NIH like this. Public agencies weren't meant to be lobbied. They aren't elected, and they have little motivation to respond to public will. It's a much better idea to lobby congress to take action or put on pressure.

 

https://twitter.com/user/status/1074779141382250497

 

So in other words they are creating a fake Mexican standoff by saying there is no one good enough to do research hence we won't fund new research and everyone and anyone you present is not good enough (and probably never will be, this part is silent).
No other disease funding works like this so they are acting in bad faith even if they choose to believe they are not.

There is no chicken or the egg problem here, there is a we are not interested but won't admit this even to ourselves problem.

 

Fully agree with this, I’m very worried by what I’ve seen.

 

https://twitter.com/user/status/1076166750851481606