USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025

petrichor said:
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.
Click to expand...

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.
 
Snow Leopard said:
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.
Click to expand...
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.
 
petrichor said:
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.
Click to expand...
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.
 
Valentijn said:
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.
Click to expand...
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.
 
Last edited:
NIH's Francis Collins will be taking part in an Ask Me Anything event on Reddit, Fri 20th April



The National DNA Day Reddit "Ask Me Anything" Series

The National Human Genome Research Institute (NHGRI) will launch the National DNA Day Reddit "Ask Me Anything" (AMA) Series on Friday, April 20, continuing each week day until Friday, April 27, 2018, from 1:00 - 3:00 p.m. Eastern. Genomics experts will answer questions at the Reddit Science community forum, "/r/Science". A Reddit AMA is an opportunity to ask interesting individuals questions about anything and everything.

Series Events
Friday, April 20, 2018
National Institutes of Health Director Francis Collins, M.D., Ph.D.
"The future of precision medicine"
The former director of the NHGRI, Dr. Collins earned a reputation as a gene hunter at the University of Michigan and subsequently lead the successful completion of the Human Genome Project 15 years ago. Now, in his current role as the director of the National Institutes of Health (NIH), Dr. Collins manages the NIH's efforts in building innovative enterprises, such as the All of Us Research Program. This AMA will focus on Dr. Collins' experiences during the Human Genome Project and how he envisions the future of precision medicine.
Click to expand...
https://www.genome.gov/20519689/celebrate-dna-day-with-nhgri/
 
Last edited by a moderator:
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
The time to mobilize is now. Let’s flood Francis Collins with hard-hitting questions asking him about why he hasn’t done enough to help people with Myalgic Encephalomyelitis. Remember: AMAs are public and the purpose is for everyone to see both the questions and answers. This is why it is crucial to make sure we frame our questions correctly to educate the public that may not be familiar with ME. People from all walks of life will be participating, so in many ways, it may be more impactful to consider your audience rather than focusing on eliciting a polished response from Francis Collins.
Click to expand...
https://www.meaction.net/2018/04/18...ncis-collins-anything-this-friday-at-2pm-est/
 
BurnA said:
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.
Click to expand...
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?
 
Alvin said:
So whats a good reply to such an answer?
Click to expand...

Don't care. Don't want to hear any more excuses. Find more money for us.

Tell every other NIH centre and department and unit that they are going to have to shave a quarter of a percent off their budget to fund our waaaaaaaaaaay overdue needs.

Sorry, but I really don't care about other diseases any more. Not until we get our fair share. Nothing more, but nothing less. When that is achieved, then I will get all generous and caring again for other diseases.

It is beyond outrageous and cruel that we have to keep begging for even token research funds. 6 million a year? You are going to have to add some zeros to that figure, and real soon.

ME/CFS is a special case. It has been so ignored and so underfunded for so long that it needs special attention to even start catching up.

I am in my mid 50s, and have been sick since I was 20. I am running out of time, and have run out of tolerance for any more excuses from the medical establishment.

If the director of the NIH can't change the funding situation for us, then who can?

:grumpy: :grumpy: :grumpy:
 
Alvin said:
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?
Click to expand...
Processes can be changed. Fact. Lost lives can't be returned.
 
Sean said:
Don't care. Don't want to hear any more excuses. Find more money for us.

Tell every other NIH centre and department and unit that they are going to have to shave a quarter of a percent off their budget to fund our waaaaaaaaaaay overdue needs.

Sorry, but I really don't care about other diseases any more. Not until we get our fair share. Nothing more, but nothing less. When that is achieved, then I will get all generous and caring again for other diseases.

It is beyond outrageous and cruel that we have to keep begging for even token research funds. 6 million a year? You are going to have to add some zeros to that figure, and real soon.

ME/CFS is a special case. It has been so ignored and so underfunded for so long that it needs special attention to even start catching up.

I am in my mid 50s, and have been sick since I was 20. I am running out of time, and have run out of tolerance for any more excuses from the medical establishment.

If the director of the NIH can't change the funding situation for us, then who can?

:grumpy: :grumpy: :grumpy:
Click to expand...
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?
 
Sunshine3 said:
Processes can be changed. Fact. Lost lives can't be returned.
Click to expand...
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
 
Last edited:
Sorry, @Alvin. Wasn't mad at you.

Just getting very frustrated that nearly 3 years after the IOM report we are still being fobbed off with peanuts, and some of even that small change is still being spent of fucking psychobabble 'research'.

Not interested in excuses any more. Where is the hard cash?
 
Sean said:
Sorry, @Alvin. Wasn't mad at you.

Just getting very frustrated that nearly 3 years after the IOM report we are still being fobbed off with peanuts, and some of even that small change is still being spent of fucking psychobabble 'research'.

Not interested in excuses any more. Where is the hard cash?
Click to expand...
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?
 
Sunshine3 said:
Alvin, I hope you will be on reddit so you can ask those questions..
Click to expand...
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?
 
You must log in or register to reply here.
Back
Top Bottom