Dr. Collins wants to mend fences - my call with him

[mfairma]

The NIH team working on this met with Carol Head and Zaher Nahle of the Solve ME/CFS Initiative last month and got their input. Today, Collins called several patient advocates. Collins has held out his hand - he wants patients involved in research. I am very hopeful we will have opportunities to help with study design (with the intramural NIH study) and possibly with reviewing grant applications for extramural research. It takes people in both camps - NIH and the patient community - who are willing and able to do the work and build a relationship. That has already started.

It is a question of degrees of commitment.

This community has waited too long to accept tokens, even if they get a little bigger. This may be the start of something good, but if that something takes another decade or two to bear any fruit, then we are not winning to the degree we could and should. Will this be the start of our Manhattan project?

The funds committed will be a telling indicator, as is the public rhetoric, as I noted above.

We owe it to ourselves to be circumspect in evaluating the actions of other actors and the nature and pace of change.

 

[Denise]

Perhaps Collins and NIH are being sincere in all of this but we've been offered words and crumbs for so long that for some (many?) of us it is hard to believe.
Also there have been conflicting stories today about whether or not ME is really being moved to NINDS (I still have not heard back from NIH about that) or not.
And I haven't seen details - for instance - what will happen re grant review process (as @Roy S mentioned - will we continue to have the SEP or will we finally get a standing review committee), what changes will there be in funding, etc.
I have seen mention that Dr. Collins spoke by phone with some people today ahead of the announcement - was anything different said than what what we have seen in writing?

I understand that I sound harsh and skeptical.
But for far too long I have been pained by how little is really available to improve the quality of life of patients.
I hope that all that we have heard about today does portend real change, real commitment, real progress - but in order for me to *believe*, I need to know all the details.

 

[SOC]

One thing that would make a large and immediate impact on the lives of PWME is for the NIH to take a clear stand that ME/CFS is a seriously debilitating illness and patients should have no-more-than-ordinarily complicated access to disability funds and supportive treatments recommended by experienced ME/CFS specialists. The number of PWME living in misery right now because they can't get disability payments or treatment covered by insurance is appallingly large. The reason we can't get the little that could be available to us currently is the picture the NIH has previously painted of ME/CFS as a psychological or behavioral disorder. The NIH could change that very quickly if the will to help us is there.

 

[Denise]

We also need to be clear on which disease is being researched.

 

[SpecialK82]

I wonder if Dr. Ian Lipkin's study will be funded now?

 

[mfairma]

One thing that would make a large and immediate impact on the lives of PWME is for the NIH to take a clear stand that ME/CFS is a seriously debilitating illness and patients should have no-more-than-ordinarily complicated access to disability funds and supportive treatments recommended by experienced ME/CFS specialists. The number of PWME living in misery right now because they can't get disability payments or treatment covered by insurance is appallingly large. The reason we can't get the little that could be available to us currently is the picture the NIH has previously painted of ME/CFS as a psychological or behavioral disorder. The NIH could change that very quickly if the will to help us is there.

This is a perfect example of the issue.

They have created a political problem, but seem unwilling to acknowledge or correct the problem that they helped to make, but want us to give them good faith as they address the scientific problem (with hopefully strong emphasis) over the next decades.

 

[medfeb]

Yes, I have ME. Sudden onset in July 2012.

I don't know if Davis's study will be funded. The folks inside NIH who are now interested in ME/CFS are trying to set up a pot of external money. I don't know when that will happen. It's partly a function of Congress and the NIH budget.

I'd think this is really just a function of NIH, isnt it?
For 2016, NIH could potentially get an additional $3.75B over a base of about $30B if NIH gets the hoped for $2B increase in its appropriation and $1.75 if the 21st Century Cures gets passed. But according to a discussion between the Senate appropriations committee and NIH, Congress leaves it up to NIH to allocate both the base budget and any new money if they get it out to specific diseases. The total amount available may be more or less based on what Congress does but we should get a fair share of whatever funds are available.

Regarding what NIH has done - the steps they took are good but at the same time, the steps are small relative to what is needed. And NIH has not come up with the money yet so we have no idea what size disease program NIH is thinking about. IMO, a $10-15M RFA isnt going to cut it. I'd think we want to be prepared to push for a specific amount - 75M in 2016 to throw out a number - if NIH doesnt come up with something concrete and substantial soon.

Thoughts?

 

[Rrrr]

@viggster might you be able to confirm to us that ME is soon to be housed under NINDS?

 

[Groggy Doggy]

@viggster

Thank you so much for your persistence working with NIH and Dr Collins. Its always great to receive good news!! It's hard enough just to get thru the day, with ME, and I am still a newbie trying to figure things out. Speaking for myself, I would think the newbie group would be the most open to making progress intially, to help bridge the gap and move forward. I feel most for the folks who have wounded on so many levels, for so many years. Healing takes time and I don't think its fair to expect anyone to jump aboard until they feel heard and then convinced that its the best decision to make.

 

[Rrrr]

yikes, just read this in today's Science mag article
http://news.sciencemag.org/health/2015/10/nih-refocuses-research-chronic-fatigue-syndrome

"NIH Director Francis Collins told Science that some investigators have long shied away from studying ME/CFS because it has been a “tumultuous” research arena, with high-profile leads that imploded and a vocal advocacy community. The attitude among many researchers has been “maybe this is an unsolvable problem, let’s just work on something else,” Collins says. “I’m happy to say we’re countering that attitude rather strongly here.”

in reality, the reason researchers were not interested in ME was because it was not funded by the NIH and it was delegitimized and marginalized and psychologized by the NIH.

 

[Rrrr]

Perhaps Collins and NIH are being sincere in all of this but we've been offered words and crumbs for so long that for some (many?) of us it is hard to believe.
Also there have been conflicting stories today about whether or not ME is really being moved to NINDS (I still have not heard back from NIH about that) or not.
And I haven't seen details - for instance - what will happen re grant review process (as @Roy S mentioned - will we continue to have the SEP or will we finally get a standing review committee), what changes will there be in funding, etc.
I have seen mention that Dr. Collins spoke by phone with some people today ahead of the announcement - was anything different said than what what we have seen in writing?

I understand that I sound harsh and skeptical.
But for far too long I have been pained by how little is really available to improve the quality of life of patients.
I hope that all that we have heard about today does portend real change, real commitment, real progress - but in order for me to *believe*, I need to know all the details.

just read this: "NIH also is moving oversight of ME/CFS research from the Office of Research on Women’s Health to the National Institute of Neurological Disorders and Stroke (NINDS)." http://news.sciencemag.org/health/2015/10/nih-refocuses-research-chronic-fatigue-syndrome

 

[SOC]

NIH Director Francis Collins told Science that some investigators have long shied away from studying ME/CFS because it has been a “tumultuous” research arena, with high-profile leads that imploded and a vocal advocacy community.

Since when has a vocal advocacy community turned researchers away from studying a disease? Has history not shown that a vocal advocacy community encourages research?

I suspect a bit of misdirection and CYA going on here. I know we need to expect this sort of thing from people in political positions and it is relatively mild as these things go, so I'm not about to blow up about this, but.... sigh.

As long as he makes good things happen at NIH, I'll be happy.

 

[Gingergrrl]

You might want to have a look at this thread @Gingergrrl

http://forums.phoenixrising.me/inde...-ex-washington-post-journo-with-me-cfs.38703/

@Sea Thank you and I even read that thread at the time it was posted but my brain did not make the connection today! Doh .

 

[alex3619]

Since when has a vocal advocacy community turned researchers away from studying a disease? Has history not shown that a vocal advocacy community encourages research?

This is, I think, a commonly held view. Its commonly held because this myth has been repeated and repeated over much of the last three decades. If we had the physical capacity to operate like advocates in other diseases we still would not justify this myth.

With the issues behind CBT/GET finally getting more time on the net and hopefully in publication, I think anyone claiming we are pushing researchers away because of our staunch stand against CBT/GET might realize we were justified after all, and that we just want good science even if the findings are unexpected and differ from what we previously thought.

There are a lot of myths surrounding ME and CFS. I hope more and more people will want to see evidence before believing them.

 

[meadowlark]

One thing that would make a large and immediate impact on the lives of PWME is for the NIH to take a clear stand that ME/CFS is a seriously debilitating illness and patients should have no-more-than-ordinarily complicated access to disability funds and supportive treatments recommended by experienced ME/CFS specialists. The number of PWME living in misery right now because they can't get disability payments or treatment covered by insurance is appallingly large. The reason we can't get the little that could be available to us currently is the picture the NIH has previously painted of ME/CFS as a psychological or behavioral disorder. The NIH could change that very quickly if the will to help us is there.

Yes, yes, yes. I wish I could like this post a thousand times.

 

[Sean]

This is brilliant, Brian - thank you and congratulations for all you've done.

Collins also asked me to figure out how the NIH and the advocacy community can have a more productive relationship. I think the criticism NIH has received in the past was warranted. But I hope today's announcement marks the start of a new relationship between patients and the NIH. They are not the enemy. Things are moving forward, and there will be more opportunities soon for patient advocates to be involved in how NIH studies this illness.

Great! Looking forward to it. No point in fighting old battles - we need to move forward.

So much this. We have to be ready to move when things change.

Doesn't mean we don't demand accountability for past wrongs, but does mean we don't get stuck in the past and miss the chance to step through opening doors.

 

[Snookum96]

Thank you Brian!!!

 

[jimells]

Science magazine article confirms that NINDS is working on putting together an RFA: That's a request for proposals that asks outside researchers to submit research projects. It's a pot of money for university researchers.

This is HUGE - the Big Banana we have been screaming for - a real commitment to spend money.

Any rumors regarding re-establishing the Cooperative Research Centers that were disbanded twelve years ago?

 

[CFS_for_19_years]

As an aside: I mentioned the problems in the UK, saying that psychiatrists had hijacked ME/CFS. Collins said, "They don't have the right skillset." That's a political way of saying: Uh, yeah, it's time for real scientists to study this thing.

One of the best quotes of the day - and this made my day. Bookmarked.

Thanks for the work you've done and keeping us informed.

 

[jimells]

Consider the quote from Collins in today's Science article: "The attitude among many researchers has been 'maybe this is an unsolvable problem, let’s just work on something else,' Collins says. 'I’m happy to say we’re countering that attitude rather strongly here.'"

Is that an honest or accountable summary of how this disease has been perceived by researchers in related disciplines? Of course not. It shifts fault from the individual and the collective to fate.

I agree his statement is disingenuous. I've never seen any remarks anywhere that suggest researchers think the puzzle is unsolvable. Researchers know how to unravel these puzzles, but they have to have resources to do it. When folks like Arnold Peckerman publish ground-breaking research and then have their research center suddenly shut down a few months later, who is going to pursue that line of work?

His statement is a far cry from the usual claims that they can't find any researchers and the ones they do find don't know how to do grant applications. I heard this boiler-plate claim as recently as the last CFSAC meeting. Although infuriating, his new claim is a major policy change. Something has suddenly shifted, like a giant earthquake, and i wonder what sort of interesting objects will emerge from the rubble.

It will probably never happen, but I still like to think that someday there will be justice for all the patients who have taken their own lives, and continue to do so every day, driven to despair by the 30 year policy of burying this illness. As exciting as these policy changes are, more patients will die tomorrow, and the next day, and probably for years to come.

Note: the closing of the Cooperative Research Centers is briefly discussed at the very first CFSAC meeting with the cryptic comment

"the centers [will] not be re-bid because they are located in Section 39, which was disbanded."