Dear Dr Collins, Can the NIH spare a few dimes? by ex Washington Post journo with ME/CFS

[Izola]

I just caught up with this thread.

A huge Thank you to Brian ( @viggster ) for writing/posting that letter! (I've already sent my thanks via twitter). I'm so glad it's going to be posted on the Washington Post blog and maybe even printed.
* * *

Just a suggestion. I know that when the brain is feeling foggy it's easy to just be on autopilot and "like" or "favorite" everything.

Thanks for the reminder and guidence in using twitter, etc. iz

 

[Izola]

But they didn't appoint themselves, did they? It's easy enough (and popular) to blame Congress. However Congress didn't appoint the grant reviewers. And I've never seen any suggestion that Congress passed a bill to close the three CFS Centers of Excellence, for example.

The job of the NIH leadership is to lead. That's clearly not happening. Collins and Fauci could start with a memo that ME is a real disease to be treated that way. That doesn't require an Act of Congress - just an act of conscience.

Jimells: We need to carve your 2 paragraphs,( immediately above,) in marble.
bless you. iz

 

[Izola]

I appreciate your feelings about this, it's just not easy for me to go public without potentially doing some serious harm in my situation and I think people need to respect that.

I know that many others here on PR who worked while having this disease would agree because terrible things happened to them at their workplace after coming out that they had this illness. If I wasn't working anymore because I became disabled then that would be a different story and the risks wouldn't be there.

You know from my posts I depend on my job for my livelihood, I have no safety net to fall back on. For me at least it was a huge step just to write this letter to Dr. Collins and have him and his office know.

Your letter was incredible. You had a nuclear impact on this along with Viggster's total destruction of a huge chunk of "planet misrepresentation of ME/cfs."

You are absolutely correct in not going public.

ME made me imperfect and a target. It was horrible. Plus, I lost a lot of income and savings.

So, It is PR member's (our) duty to not out you any more than what now exists. iz

 

[Izola]

Alternatively,

There's something happening here
What it is ain't exactly clear

Buffalo Springfield

Neil Young and Dylan writing together back then? joking. I am reading this forum and listening to the Travelling Wilburys. Dylan didn't croak back then joking--I read a Rolling Stone Mag article recently. Dylan had been given a high honors award. RS printed his whole long speech, mostly him saying people said he croaked and he repeatedly denied it. He paused then said "Nobody complains that Leonard Cohen croaks."

Totally on topic. iz

 

[Denise]

I sincerely hope that Collins will effect a significant shift in NIH policy and funding for ME. However I think that we need an overall policy shift. One that does not rely on the word of an individual.

In this interview, Collins appears to indicate that he may well leave NIH in the not-too-distant-future.

"The NIH director on his future, a favorite book, and the time he disobeyed his mom
...
What are your plans for January 2017?
I have no idea. I am fully aware that the NIH director is appointed by the president, and so the future depends very much on who the next president is and what they want to do.

Would you be willing to stay?
I don’t know, eight years is a long time to do a job of this intensity, and I also think it’s good for institutions to have turnover, so I’m not sure I would want to do this. ..."

http://www.statnews.com/2015/11/27/francis-collins-interview/


If/when he leaves, is there any guarantee that NIH will continue with whatever changes he makes re ME?

I believe we would be better served not just with allies, but with overall policy that transcends the word and tenure of an individual.