STAT: 'The NIH is thwarting research on a poorly understood yet serious condition', 2019, Jennifer Spotila

Opinion piece in STAT by Jennifer Spotila

https://www.statnews.com/2019/01/10/nih-obstacles-thwart-myalgic-encephalomyelitis-research/

 

Was there a report from #MEAction on that meeting? We always think if we could meet these people and make the argument things would change. I can’t imagine what I’d do in a meeting if I was just met with smiles but apathy, weak promises and not much beyond same old.

 

Thread on the whole process, https://s4me.info/threads/meaction-nih-update-collins-will-meet-with-meaction-representatives.5635/

Direct link to the outcome, https://www.meaction.net/2018/12/17/meaction-met-with-nih-director-heres-what-happened/

 

Short blog from Jennie highlighting the article, http://occupyme.net/2019/01/10/nih-obstacles-thwart-me-research/

 

https://twitter.com/user/status/1083344882574479360

 

https://twitter.com/user/status/1083550905700634624

 

https://twitter.com/user/status/1083459080293961730

 

https://twitter.com/user/status/1083416867522265088

 

Obstacle #6:

Francis Collins is a failure.

 

You can hardly call him a failure when he succeeded in calming patient dissent for another two years so he could devote his attention to issues that deserve it. He's probably got more years left in him as well.

 

I don't expect him to be able to right the ship alone, but making the same old tired excuses is a slap in the face. It seems to me that there's a lot he could do rhetorically to tilt our situation in a new direction if he felt invested enough to do so, even if he alone can't move the mountains we need moved. There's no plan to get us where we need to be, no urgency to make change, and the excuses demonstrate an unwillingness to acknowledge those facts. To me, it's stalling and more of the same "You just need to be patient" that HHS folk have been saying since I got sick. Cut the bullshit. The subtext is that he feels other issues have greater priority. Some certainly do and should, but our disease should be higher on the list of priorities than it clearly is. Collins is failing this disease.

Re-reading Anne Ortegren's letter the other day, one of the emotions I had was that patients have done enough to communicate what we've had to live. What there hasn't been is ears willing to listen. I don't feel the ears at HHS are open. The first time I gave CFSAC testimony in person, one of the officials came up to me afterward and smugly said something along the lines of, "Well, if we did any more for your disease, it wouldn't be fair to all the other diseases." This was back in 2012.

Edit: Just wanted to add that I was thinking about the CFSAC incident and mispoke a bit. I had waited afterwards to try to speak to some of the officials to understand where they were coming from. The nonsensical response above came in that context, so not quite as unabashedly ridiculous and evil as described above. But the quote is near verbatim and the smug delivery was searing.

 

This situation is a quagmire that is going to take many years more to correct if we wait for normal institutional processes to fix this in their own timeline. Leadership from the top is essential

Collins is not "personally" the problem but his lack of serious, focused leadership and that of other NIH leaders is a problem.
NIH claims the problems are poor quality, lack of researchers, and not knowing enough about the science. But there are numerous opportunities to rapidly accelerate this field if only there were the political will and leadership to mount the appropriate response.

A recent US broadcast reported on the current HHS efforts on the extremely rare acute flaccid myelitis, a mysterious polio-like illness that has paralyzed some children and, often strikes after a mild illness.

The report said that CDC has launched a task force to" focus like a laser on the illness," and the NIH has also ramped up their research. One NIH leader stated "It's frustrating that we don't have the answers, but we feel a degree of urgency here. We feel a responsibility to the public, to the mothers, to the children, that, even though it is rare, we feel a responsibility that this is a mystery and we have got to tackle it.
https://www.pbs.org/newshour/show/racing-to-understand-the-polio-like-illness-paralyzing-kids

Where is the urgency for ME? Where is the responsibility to the public, mothers, children to do something for a disease that has such a tremendous disease burden and affects so many people? Where's the similar laser like focus and urgent commitment for ME?

Given the magnitude of the hole we are in because of the misinformation and stigma, the lack of research, the lack of researchers, and the lack of clinicians to correctly diagnose patients for research, we need more than the normal "turn the crank" efforts to accelerate progress in this field. We need strong leadership from the top.

 

Byron Hyde has some details that are new to me about the NIH's disgusting history regarding us near the end of this-

https://www.healthrising.org/blog/2017/05/23/doctors-hyde-amy-browns-m-e-enterovirus-story/

Collins now shares the responsibility.

 

I agree - NIH had a direct role in endorsing/accepting the UK BPS model and in perpetuating the neglect and misunderstanding. So NIH leadership now has to take a direct role in fixing it.

 

Entirely in a spirit of friendship, I do sometimes wish that the role Shorter, Kleinmann, Eisenberg, Abbey and others played in helping shape the "UK BPS" model could be generally acknowledged. In the summary of the CIBA symposium prepared for the MRC their contributions appear to have been major drivers. Indeed, they make Wessely's contribution appear quite reasonable.

EDIT Eisenberg was not at the symposium. It was elsewhere that his contribution was recognised.

 

Yes, of course. Totally agree, they played a significant role in the CIBA proceedings.

I was thinking of Straus' ongoing engagement with UK direction - his strong endorsement of the 1996 UK Royal Colleges report on BPS and NIH's 2000 "consultation" to "improve the quality, direction and extent of CFS research.” The meeting was attended by 4 people - Straus, Wessely, Sharpe, and Dr. Mark Demitrack, a psychiatrist from Eli Lily.

 

Check out @oslersweb’s Tweet: https://twitter.com/user/status/1084189039429857280


Let's hope this time we make some strides....dog chasing tail comes to mind. Carol Head and ME Action member at the table is a big plus (I hope).

 

How widely read is Statnews? I'm not familiar with it.