USA: NIH National Institutes of Health news

Please everyone go upvote the questions about ME/CFS so they stay visible!
Also, many thanks to whomever has been giving them gold!

 

Dr. Francis Collins Interview Live on
Bloomberg TV (YouTube Link) Not on ME/CFS

 

NIH Director Francis Collins and FasterCures Executive Director Tanisha Carino continue the discussion from the "Future of Health" panel about the All of Us research initiative LIVE at #MIGlobal. (It was a Facebook Live Event)

A few ME/CFS questions/statements were posted. None answered.

 

NIH Director Francis Collins YouTube Live Q&A 3/14 @ 7PM ET

Just wanted to share that NIH Director Francis Collins will be taking any health / medical / medical research questions on a YouTube Live Q&A at 7:00 pm ET tonight (3/14), in hopes to help promote @AllofUsResearch and his vision for the future of health. I think any opportunity to ask Francis Collins about prioritizing ME/CFS research can only help our cause and keep it on the forefront.

FYI: the All of Us Research Program's mission is to speed up health research breakthroughs.

https://twitter.com/user/status/1105894222073352192


Link to the YouTube live:

https://www.youtube.com/watch?v=qjNnhdsgWsU

 

All of us!

(except you, and you, and you as well)

 

Francis Collins will no longer take part in all male panels

June 12, 2019

Time to End the Manel Tradition
The National Institutes of Health is committed to changing the culture and climate of biomedical research to create an inclusive and diverse workforce. The recent report by the National Academy of Sciences, Engineering and Medicine, “Sexual Harassment of Women: Climate, Culture, and Consequence in Academic Science, Engineering, and Medicine,” identified the critical role that scientific leaders must play to combat cultural forces that tolerate gender harassment and limit the advancement of women. These concerns also are highly relevant to other groups underrepresented in science. It is not enough to give lip service to equality; leaders must demonstrate their commitment through their actions.

Toward that end, I want to send a clear message of concern: it is time to end the tradition in science of all-male speaking panels, sometimes wryly referred to as “manels.” Too often, women and members of other groups underrepresented in science are conspicuously missing in the marquee speaking slots at scientific meetings and other high-level conferences. Starting now, when I consider speaking invitations, I will expect a level playing field, where scientists of all backgrounds are evaluated fairly for speaking opportunities. If that attention to inclusiveness is not evident in the agenda, I will decline to take part. I challenge other scientific leaders across the biomedical enterprise to do the same.

The diversity of bright and talented minds engaged in biomedical research has come a long way – and our public engagements need to catch up. Breaking up the subtle (and sometimes not so subtle) bias that is preventing women and other groups underrepresented in science from achieving their rightful place in scientific leadership must begin at the top.

Francis S. Collins, M.D., Ph.D.
Director, National Institutes of Health

https://www.nih.gov/about-nih/who-we-are/nih-director/statements/time-end-manel-tradition

 

For balance (balancing out all the years of all-male panels), he should resign and adopt a 100% women panel policy in the NIH for a few years.

 

As the NIH director, I feel this is a topic he should not be engaging in. I mean, does he not have anything better to do, like real science reseraches? Now i dont mean to offend any female mates here, but I sense that this topic is overrated and is being used in the media often to distract people from the real problems such as free healthcare, free education etc. How about speaking about that and stop waste our time? When we actually resolve the REAL problems, then we can go speak about this masculism/feminism non-sense (no offense to masulisms/femintists).

 

It's not a waste of time, it does not detract from the other problems unless we let it distract us.

 

I work in an engineering field for a large European company. When I joined (20yrs ago) the ratio of men to women engineers was heavily biased, as you might expect. The approach that has been taken in the intervening years is the correct one, in my view, in that the women who were in the business were used as positive role models for students at schools and universities. Note I say students, as in my view a women engineer can be a positive role model for male or female students.

I believe that today the ratio, whilst still higher for males, is much better and I work with quite a few successful and much more senior engineers who happen to be female.
Is the same bottom up approach taken in medicine? From the outside, with no knowledge of the approach being taken in the field, to bring in the issue of balance of the sexes at only the highest level could be detrimental to the panels (on which the most suitably qualified individuals should sit regardless of their sex). What's the overall balance in the field when it comes to researchers? His statement implies the diversity is there, in which case it would be realistic to see that reflected in panels.

 

Penny-ante at a high-stakes game.

 

This looks like a bad case of gesture politics. Should we be surprised?

 

It would be nice if he'd focus on a level playing field where all illnesses are evaluated fairly for research opportunities.

I'm sure breaking up the bias that is preventing women and other groups from being rightfully represented in scientific leadership is an important issue, but I don't see how Francis Collins' posturing is going to change anything. Far be it from me to call anybody a hypocrite, but how long was ME parked in the Office of Research on Women's Health and how much progress was made whilst it was?

So now being at the top enables him to make a big difference on important issues does it? What a pity it's never occured to him to start posturing on behalf of ME sufferers. That might be a more effective way of enabling millions of women (and men) to achieve the brilliant careers in science and other fields they could have had instead of being left to rot for decades.

 

For a decade, Francis Collins has shielded NIH—while making waves of his own - Science Magazine 15 August

Full article at: https://www.sciencemag.org/news/201...s-has-shielded-nih-while-making-waves-his-own

 

Merged thread
A thread for general NIH news and discussion
See also: USA: NIH funding for ME/CFS research


From an email to the NIH MECFS Information List.

News from CDC:

CDC just published a COVID-19 Broad Agency Announcement which is available at the following link:

https://beta.sam.gov/opp/0ccf2f05b7084368ad8dc3fd00b6d774/view?keywords="Centers fir disease control broad agency announcement"&sort=-relevance&index=&is_active=true&page=1

Although this announcement is not published by our ME/CFS program, we would like to raise awareness of this opportunity among partners with an interest in postinfectious fatigue, ME/CFS, or similar syndromes. Please note in particular the following topic:

Topic 12. Evaluating and Improving the Clinical Care of Individuals with Chronic Sequelae of SARS-CoV-2 and Other Infections.

12.1. Conduct implementation research to design and evaluate multi-disciplinary team approaches most effective in caring for long COVID, ME/CFS

and other post-infectious fatiguing illnesses, with the goal of improving the quality of life of those affected and supporting their recovery.

The primary point of contact for this announcement is Ronnie Williams, who can be reached through email at oga3@cdc.gov.

 

Split from Possibility of ME or PVFS after COVID-19, Long Covid


https://twitter.com/user/status/1351543152964845570

https://twitter.com/user/status/1351551503891386368

 

This, going out of their way not to mention the elephant in the room, is frankly the final straw I needed to confirm that without LC, the NIH never had any intention whatsoever to do anything serious about ME, that even with the most significant opportunity to ever present itself, they seem more motivated to limit the effectiveness of the response to LC than risk making progress on ME.

Not liking what this implies about how that $1.15B could be squandered. There is absolutely no excuse for Collins to avoid the obvious here. This is a statement and it bodes nothing good. At least with Collins being renewed as head of NIH. Could be worse, but he is completely useless on this issue.

I do appreciate this very much, it's so easy to leave us behind but some understand that there is no going forward without making up for the ongoing failures dating back decades:

https://twitter.com/user/status/1351562272230035456


The author of the 2nd Body Politic research reminding Collins of the elephant in the room he badly doesn't want people to notice.

 

I wonder if Collins will have to answer some hard questions once the devastation caused by neglecting research into ME/CFS and PVFS will become evident.

 

That probably assumes two things

1. That this is what happened, that one shot of vaccine diminished the ability of the virus to kill her, that without it it would have done, and
2. That in a pandemic the main threat is from the virus. At least from my point of view the virus isn't the problem, other than at a population level. The threat to individuals, like me, or her, comes not from the virus, but from people.

Vectors of transmission are practically the only important thing, if I want to not get infected, staying away from.

This is mainly people, and the way they behave.

Not buildings or places, as the authorities seem to want people to think.

I really, really, doubt it.

 

Collins clearly needs to be replaced if anything positive is to happen at NIH for people with ME.

Biden has chosen to continue with his tenure unfortunately. This is just an opinion based on little more than a hunch but I don't think that there will be a sea change at NIH to how ME is viewed despite this pandemic. The prejudice against ME is deeply rooted and systemic.

We may yet benefit but it would be collaterally. And there is the concern that there could be further political instability that would result in an even more regressive attitude to people with long term chronic unwellness.

Or it could all turn out much rosier but I think it would have been better to have chosen to oust Collins.