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Bullshit.

They can review the quality of the reviews process. They can review why they are selecting terrible reviewers.

The process is known to be flawed and there is much discussion on this.

https://www.rand.org/pubs/technical_reports/TR742.html
http://www.bmj.com/content/343/bmj.d4797
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0130450
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0002761
http://psycnet.apa.org/doiLanding?doi=10.1037/0003-066X.63.3.160

More, if I was to spend more than 5 minutes finding studies.

 

Even if it's actually within their control to influence the outcome of grant applications by the way that they select grant reviewers, the best way to fix that is still through congress. Public servants don't actually care too much what the public think, because it isn't their job to care about that. Their job is just to follow the legislation that dictates their organisation, and do what politicians want them to do. (This is especially the case in the US, where governmental agencies have less independence than average from the will of politicians)

Everyone in congress would be quite happy that the NIH is taking all the blame, because it means they don't have to take any responsibility. I think, though, it's all their responsibility. The NIH *kind of* has some excuses, but it's pretty justified to describe the response of everyone in congress as one of gross neglect.

 

I rather doubt that Congress has the power or inclination to identify the biased reviewers and remove them from being used to review proposals. While funding is always an issue, there have been huge problems with high-quality proposals being rejected solely due to blatant bias regarding the etiology or classification of ME/CFS.

More funding and more proposals are pointless if bad reviewers are still allowed to turn down projects which do not embrace the reviewers' baseless beliefs.

 

I was more referring to solving the problem by earmarking more funding in general, which, if it was a significant amount, would attract a lot more grant applications* and mean that much more grants are given. This has been done with many other conditions by congress, and it's already been done in Norway, where it worked extremely well. It might still mean that high quality applications are rejected, but at least others would get accepted. If they did something like a specific call for proposals which were all evaluated by a particular committee, that could also eliminate problems with some reviewers (I think that's what was done in Norway).

Congress could also specifically earmark funding for biomedical research, if you're concerned about psychological research being funded. There are lots of options, and many of them are possible. As far as problems that politicians face go, this is an extremely easy one to solve.

 

NIH's Francis Collins will be taking part in an Ask Me Anything event on Reddit, Fri 20th April

https://twitter.com/user/status/986635999794159617

https://www.genome.gov/20519689/celebrate-dna-day-with-nhgri/

 

Is it worth signing up and asking things? Any idea what? I don't see an easy way of getting the NIH to comment on the problems with PACE, and that's all I really know about. Any suggestions?

 

#MEAction suggest some ways of framing questions to Collins here

https://www.meaction.net/2018/04/18...ncis-collins-anything-this-friday-at-2pm-est/

 

Bump - this is happening in just over 6 hours - countdown available here, https://countle.com/Eo180504J4

 

I'd forget all about PACE, the goal is more research money.


Just ask him why he doesn't fund ME research commensurate with the burden of the disease.

 

His answer will probably be that they don't have the resources and his hands are tied and he is doing everything he can in the current climate (and then will explain what we already know or throw in a tidbit)
So whats a good reply to such an answer?

 

Processes can be changed. Fact. Lost lives can't be returned.

 

Your not going to get any argument from me since i completely agree with you but you don't go crazy on someone who holds the purse strings and expect him to help you.
The reason i mentioned it was so we could have an answer for this likely response, and you get more flies with honey then vinegar. (usually).
That doesn't mean be doormat but it does mean asking strategically and making a case that gets us the money.
Can he unilaterally cut money from other diseases (if not then asking him to is a waste of this opportunity), does he have discretionary money available, can he make deals with commercial enterprises to get money on our behalf, are there other options that i have not mentioned?

 

My point is be ready for this answer and have a thought out answer ready. What options does he have that we can press for use to our benefit? If you want to win a battle it helps to understand how your adversary works and what his options are.
When you anticipate what unhelpful answers your going to get you can have responses ready to move beyond them

 

I understand, tell him off if you wish, will that get us money?

Are the dollar amounts to each disease decided by congress and unchangeable, can he get back the money that was allocated but not spent for two(?) decades for ME/CFS, does he have a discretionary account to draw on, can he lobby and successfully get more money?

 

Alvin, I hope you will be on reddit so you can ask those questions..

 

I will not unfortunately, and i don't have the knowledge of the NIH money constraints or procedures, though i hope someone reading this does and can ask excellent questions

Are you able to attend and ask the questions i have posted?

 

I am trying to get in at.present