USA: NIH National Institutes of Health news

Instead of striving to avoid false hope, how about striving to create real hope?

 

https://twitter.com/user/status/953512564511690752

 

Sounds more like a cop out then being serious, despite the spin.
Problem is most of the public falls for blatant spins

 

Distinguishing between false hope and real hope is a way of implying that the NIH have ever offered any hope at all to ME sufferers. I think many ME sufferers have learnt the hard way not to hope for anything at all from the NIH to avoid further disappointment. The idea of the ME community waiting hopefully with bated breath whilst our heroes labour on and that our wild expectations need to be dampened down is laughable. Acting in a way that would convince ME sufferers that they aren't going to be completely screwed over again would be a good start. By which I mean do Brian Wallit and chums really have to be involved, and when Walter Koreshetz says any evidence of bias would be a "career breaker" and the next thing we know Wallit is inviting his pal Shorter to promote BPS views in the fucking building blah blah blah why do I bother ...

Ever the optimist I am prepared to be pleasantly surprised of course, but needing my false hopes and expectations dampened down? Don't flatter yourself Mr Collins, you're firmly in the "I'll believe it when I see something" category.

 

Talking in circles with generalizations, dodges, omissions and misdirections is what a lot of people who succeed politically are skilled at. His position is a political achievement. He functions as a politician rather than a doctor or scientist. He is skilled at confusing people so that before someone can get off a fog-cutting, focussed, pertinant question, someone like him is out of the room. Time is up—conveniently.

Early on when this guy took the post and started communicating, I guess I took his measure. He hasn’t improved. I was disgusted by this recent statement as it sends listeners off on a trial of false bait. I would never give this guy the benefit of the doubt!

 

@TiredSam perhaps the writer or editor turned a long interview into a /remarkably/ caa-like piece about our emotions.

is biology not their job in bethesda?

not to mention the joke koroshetz trots out about "never heard anybody ask for less resources ha ha har har hee hee hoo hoo" [paraphrase] which wasn't funny even before he started using it on us to distract from and delegitimize.

 

I don't know how much it's actually within the control of the NIH to earmark funds or change the grant awarding process without political support. So, maybe it is possible that the NIH cares*, it's just that politicians don't.

Also didn't Koroshetz say just after that joke that he actually thought ME/CFS funding would have to be about 10-20 times what it is now?

*They probably don't really

 

http://www.meaction.net/2017/02/03/pwme-people-with-me-are-being-murdered-by-neglect

 

Koroshetz doublespeak:
"...so the competition at NIH, because of the funding situation, is such that only 12% of the grants get funded. So that means 88% get rejected. We get about 10 ME/CFS grants a year. So even with those numbers that’s one grant a year. What we need to do is to get 100 times more people interested in working on ME/CFS and that’s what the program that we’re putting out is trying to do."

Nonsense!! Allocate the appropriate amount of funds in the first place. Period. Jeebus.

What a buncha baloney.

 

No, that's actually how funding agencies work. They don't generally earmark funds, they just get grant applications, then those applications are reviewed by one or two committees, and then they are chosen. You can read about the NIH grants process here: https://grants.nih.gov/grants/grants_process.htm. You can see that at least one step in the review process is carried out by non federal scientists.

I think he's right that that's the problem with ME/CFS - nobody is even applying for grants. That's why political will is probably required, because something special has to be done to make people start applying for grants.

 

If I'm not mistaken, the Collaborative Research Centers were funded by many departments in the NIH contributing a bit of money each. This indicates to me that Collins applied pressure to departments to find money in their budgets. It's not the way it should be, we should have dedicated funds, but the grant-funding process is a popularity contest and Collins did find a work around...even though it is still not enough.

 

There is no logic in saying they can't fund the grant applications they do get because there are not enough applicants. I don't care what convoluted practices they have, that is an absurd concept.

They keep denying the researchers that do request funds. It is not true that nobody is applying. Saying they need 90 other applicants so that they can fund ten good ones makes no sense.

NIH has underfunded this disease for multiple decades. They can and do earmark funds for specific diseases. They have repeatedly promised appropriate funding for us. It never happens hasn't happened yet.

 

This is not completely true, I've seen more than a handful of researchers at well known universities with good research plans who had their grant applications rejected.

The NIH could fund more if they wanted to - some of their grant reviews have been biased/of poor quality.

The other side of that is many potential applicants simply don't bother as there is a high risk of being rejected.

The problem has long been lack of leadership and the solution has always been for the NIH to specifically take action to increase research capacity and to improve the quality of application reviews. There is some sign this is starting to happen, but it is happening very slowly and the fact is it should have started over 20 years ago.

 

I might be wrong about this - but I don't think it's fully within their control whether the grants are awarded. I think the legislation dictates that they have to let each grant application be reviewed by some external scientists, and it isn't within their control what decision is made. That's why there probably needs to be some political intervention to solve the problem.

 

So what's it going to take? Someone in the family of a senior politician becoming ill with ME too? Seriously, how are we going to win this?

 

The way that we won in Norway I guess. In Norway I think it was the Prime Minister that lead the change.

But this is just like any other political issue. Lots of other conditions have secured great increases in funding because they kept lobbying politicians about it.

 

for purposes of this post, i will be agnostic on whether
francis is doing everything in his power to do the right
thing. with that stipulation, it's possible he's burning
the midnight oil for us, but is constrained. i do not want
to accuse such a person.

but few if any at this point would deny that he has been at
it for many years and he is failing. if he thinks he is
succeeding, then that is an additional problem.

i do not accept the idea that time is needed.

===

francis's idea of results might be different from mine.
maybe he thinks a /treatment/ 100 years from now is good for
m.e. and related diseases, unlike a /cure/ for hiv.

or maybe he's on board. dampening our hope is needed
because they found the cause and did a clinical trial inside a
dormant volcano and we should not celebrate until the
results are confirmed in the second location in the ocean
trench. i will be agnostic on this.

(james bond, working for the smc, might leak it as part of an
intricate plan regarding the invasion of the isle of man by
the isle of woman in order to create a new entity called the
isle of child.)

===

as far as i know, at best the dominant narrative from the
nih has been "our hands are tied". i am ignorant, so i
cannot judge by whom. i hear mixed messages about
bureaucratic stuff i cannot reconcile. but i think the top
priority is finding out what PRECISELY the obstacle is.

i abhor guesswork. the us is still supposedly a democracy.
which means transparency. we have nih experts, but they are
not on this forum afaik. perhaps they can be invited? i do
not know whether they are expert enough.

i can say "congress" as much as anybody can. and of course
we need that -- and that expertise! what i don't know is
what nih is not forbidden to do that it can be doing.

 

As a cynic I think we have to be more visible (which we struggle with for obvious reasons) If we are seen, and seen to be lobbying, that makes it harder for politicians and the health organisations to ignore us.

Norway does give me some hope.

@Samuel I like your signature about those too sick to post