Blog: Occupy ME: "NIH Funding for ME Needs Life Support"

http://occupyme.net/2019/11/07/nih-funding-for-me-needs-life-support/

 

I don’t mean I ‘like’ this. Nobody could like it.
Just a disaster. And the NIH study is still not recruiting? Unless it’s changed recently.
What is going on?

 

Depends what you mean by "recruiting". NIH states they are making efforts to reach the researcher community through conference presentations, holding their own conference, etc. But these are very passive approaches that are unlikely to encourage researchers in already established fields to enter a field that is notoriously difficult to get NIH funding for because of stigma, lack of research, and a whole host of other issues that NIH itself has allowed to fester for many years.

To climb out of the hole ME/CFS is in in a time scale that matters to patients, NIH needs to be much more proactive in its "recruitment" efforts and issue funding opportunities with set-aside funding.

Edited to add:
Please sign the petition to tell NIH their current efforts are #NotEnough4ME
https://act.meaction.net/page/13656/petition/1

 

Did you mean extramural research or the intramural study that Dr Nath is in charge of, @Binkie4 ? The intramural study is still moving along, but what NIH does most is fund extramural research. We need a vast increase in extramural funding of a wide variety of researchers.

 

I meant the intramural study @Wilhelmina Jenkins. I’m glad it is making progress.

 

Ah - thanks for clarifying that, @Binkie4 . My mind went to them recruiting new researchers to the field and I should have asked

 

I think this needs a multi-tier strategy.

How about hiring or recruiting a high profile celebrity to do a fundraising tv event?

Cher has chronic lyme fatigue so she would be a prime candidate.

Also petition Senators and Congressman to support a resolution for a much higher funding level at NIH?

 

Reblogged by David Tuller:
Trial by Error: NIH Funding "Needs Life Support". Says Jenny Spotila

Every year, Jennie Spotila deconstructs NIH funding on her Occupy M.E. blog. Last November 7, she crunched the numbers for the 2019 fiscal year, and the same day posted another blog with a more urgent message. I am re-posting that blog in full (a bit late), with Jennie’s permission.

 

NIH doesn’t list a prevalence figure for ME/CFS on it’s spending by disease page, but does for other diseases with high numbers of patients? Would be a good topic for @dave30th to follow up on to increase awareness within NIH.

[For those wanting to look it up the disease is listed in the table as "Chronic Fatigue Syndrome (ME/CFS)", prevalence is the last column]

https://report.nih.gov/categorical_spending.aspx