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Jennie Spotila blogpost: NIH Attitudes Affect Policy: A Story In Two Parts

Kati

Patient in training
Messages
5,497
This is a very interesting post backed by freedom of information requests. Here is the introduction:

The current situation for ME research at NIH is still a problem, despite the fact that the RFAs will increase spending on ME by a significant percentage. I say this based on two things: what the ME field needs to catalyze research and how NIH attitudes about ME are interfering with that. There is a toxic stereotype in play: that people with ME are responsible for the current situation. I believe that as long as that stereotype is held by people in positions of power, we face a slow and uphill battle to obtain the research funding that is so desperately needed.

Part One: You Have Disappointed Me

In November 2016, Carol Head and Dr. Zaher Nahle of the Solve ME/CFS Initiative secured a brief meeting with NIH Director Dr. Francis Collins. They reported that it was a positive discussion, but emails I obtained through a Freedom of Information Act request reveal NIH’s intention to manipulate the encounter.

Much more at the link: http://occupyme.net/2017/06/27/nih-attitudes-affect-policy-a-story-in-two-parts/


Disclosure: I am mad as hell that all of us are still in limbo. We have a right to be angry. There is a need for reconciliation.
 
Messages
724
Location
Yorkshire, England
A good post highlighting the difference between viewing 'patients' as an abstract mass, (note our complaints are always suspected to be organised by some hidden central focus. We are viewed as unable to have initiative or the will to act unless prodded and manipulated.) and 'patients' as real people.

Edited for spelling
 
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Kati

Patient in training
Messages
5,497
This is a great blog post. I hope Collins and Koroshetz read it and actually engage in some critical self-reflection.
I hope they read it too and I hope they are not mad that patients ask for freedom of information act documents, namely emails. We are well beyond trust, for our community. We live in an era where some so-called scientists (psych lobby) still try to pull their way and prevent real research from happening. Stakes are high. There is still no approved drugs, still very few money for research, no multi-center clinical trials, and no medical specialty.

Patients have a right to wonder if the research will be done right (right case definition, right cohort, right tests, right conclusons) and whether NIH is being influenced by someone like Edward Shorter.

The best way forward is to invite patients at the table, and establish trust. Ensure the maximum transparency possible and engage in a dialogue that will move us forward.
 
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15,786
Jennie Spotila's Blog said:
The emails show that Dr. Koroshetz, Director of the NINDS and Chair of the Trans-NIH ME/CFS Working Group, was angry about the controversy. In responding to Dr. Collins’s request for updated information on the RFA and intramural study, Dr. Koroshetz wrote:

I was pretty upset with Solve ME/CFS for making such a huge fuss over the seminar at NIH by the historian from Canada. If you can impress upon Carol and Zaher the importance of Solve ME/CFS joining with the research effort and not inciting mistrust at every twist and turn that would be helpful. Mainly I am worried that researchers will shy away from studying ME/CFS if they are subject to one attack after another due to the strong biases that are out there. Funding could be for naught.

Unfortunately Collins responded by basically backing up Dr. Koroshetz, albeit in much milder terms. Maybe he was placating Dr. Koroshetz in the midst of his little temper tantrum? I'd be curious to know if Solve ME/CFS got the promised reprimand from Collins.

However that was in November of 2016, and Dr. Koroshetz made some very positive statements in early June 2017, which the blog also covers - such as funding needing to increase twenty-fold, history of patients being ignored, needing to rebuild trust, etc. I don't agree with the blog's criticisms of these statements at all. But I wouldn't be surprised Dr. Koroshetz's improved attitude was inspired by knowledge of the FOIA request which obtained his inappropriate earlier comments, and merely demonstrates a preemptive attempt to repair the damage those statements are now causing.
 
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dreampop

Senior Member
Messages
296
There is a toxic stereotype in play: that people with ME are responsible for the current situation. I believe that as long as that stereotype is held by people in positions of power, we face a slow and uphill battle to obtain the research funding that is so desperately needed.

Yeah, basically I'm of the opinion that it's just plain discrimination. No drama, it's just what it is. Stereotype of a minority + government impact of that stereotype. My optimistic opinion was that Collins + Koroshetz were above it and wanted to move things along without stirring the pot. Collins, in particular. These comments, which are behind closed doors anyway, suggest that is not the case. Really, their official response to Shorter signaled it, but this is pretty blatant.

How can you say in the same breath "you're not receiving enough funding, but you can't be agitory at all". That is a statement that comes from a deep held discrimination. Your not being treated equally, but you can't seem upset. Funding could be for naught - then he ends with a veiled threat. The confusion is being treated equally in America is not a favor, it is a right. But it's only a right if you fight for it.

I mean, what researchers even know/care that Shorter gave a private talk at the NIH and the ME/CFS sent a few e-mails saying that's not o.k.? Koroshetz can't back up that statement at all. It's so absurd. "I won't submit my grant to study ME/CFS because patients sent e-mails saying Ed Shorter shouldn't be giving a history of CFS"... How would they even know a few e-mails were sent out? And its funny, because as far as I call tell, in 1997 when funding started decreasing in absolute dollars, PR wasn't around, Twitter wasn't around, I find it hard to believe "difficult patients" were the problem then.

And it fits - it fits with what the British tribunal said, Nath's contradiction, that BS about being harassed. It's a narrative, a good one, a convincing one and a scary one (because you don't want to lose what little you have), but it's not one based in the facts. A lot of props to Spotila, because it's really important to build as a complete record of the NIH's private thought process even when any given FOIA or whatever doesn't blow up.
 
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