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

[bsw]

Shouldn't the title be the NIH wants to mend fences?

Regardless, awesome news.

 

[viggster]

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.

 

[ScottTriGuy]

No doubt good news from the way Collins is purportedly talking and the NIH release.

The real proof will be in biomedical action.

Want to buy it, but am afraid of bait and switch.

 

[Rrrr]

No doubt good news from the way Collins is purportedly talking and the NIH release.

The real proof will be in biomedical action.

Want to buy it, but am afraid of bait and switch.

we all are afraid of that. and not without reason. the NIH has not been our friend. it has been our adversary. CDC funding study/paper after study/paper psychologizing our disease. a few in just the last 1-2 years! wasn't one saying that we don't go out of the house because we are scared to go out of the house!?

they have a 30 year track record of creating this distrust that collins is now apparently trying to turn around. the best way to turn this around is to put real $$, and not just words, into studying this disease. AND ALSO APPROVING AMPLIGEN, the only treatment that has helped a significant number of the patients who have tried it.

fingers crossed that both happen now.

i feel a bit like i'm in a dream. i want so badly for this to pan out.

THANKS AGAIN TO @viggster

 

[viggster]

I'm glad that they want to mend fences...In my mind, the biggest challenge will be rebuilding trust. Anyways, thanks for posting

I'd say NIH has already built trust. Back in July, Collins *promised* me and the patient community that NIH would make changes. He's followed through on that promise. That's how trust is built.

 

[Thomas]

Thank you for all your hard work, we're all cheering you on.

 

[Kati]

@viggster thank you so much for sharing this. i am a bit overwhelmed by the chain of events today. It's quite emotional. It just feels like we are being 'saved' or 'rescued' at long last.

 

[Rrrr]

@viggster thank you so much for sharing this. i am a bit overwhelmed by the chain of even today. It's quite emotional. It just feels like we are being 'saved' or 'rescued' at long last.

for the head of the NIH to even acknowledge us is amazing. i am soooo holding my breath. years and years, decades and decades, lost to this disease. with long overdue help from our gov't, may we all rise up like the phoenix we want to be.

 

[viggster]

Agreed. Patients rightly complained (none more tellingly than Brian - thank you so much!) but this is huge. Yes, ultimately the NIH will be judged on the size and quality of its future mecfs programme, but we should recognise and appreciate today's huge step. Any suggestion how?

Would love to know more.. I'm a big fan of the principle of involving patients in research as partners rather than simply as participants. "No research about us, without us" would be nice to see.

Simon - I think there will be opportunities for patients and advocates to have input in how the research at NIH is conducted. Already, Carol Head and Zaher Nahle of the Solve ME/CFS Initiative have met with the team at NIH that is organizing the intramural study. At some point (I don't know when), the NIH will begin recruiting patients for the study in Bethesda. I am sure Carol and Zaher will be informed of all this and I am working with others to make sure information gets to the community. It's all about building bridges and open channels of communication.

 

[ScottTriGuy]

Keep up the good work @viggster

 

[MEPatient345]

This is so amazing.. Thank you @viggster for keeping us all informed and pushing for this.

 

[viggster]

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.

http://news.sciencemag.org/health/2015/10/nih-refocuses-research-chronic-fatigue-syndrome

Collins says NINDS Director Walter Koroshetz is “determined to move pretty fast on this,” including soon issuing a new request for proposals to extramural researchers. “Give us a chance to prove we’re serious, because we are,” Collins says.​

 

[Sasha]

I just posted a comment on there thanking Dr Collins and the NIH - a good place to do it publicly.

 

[Valb626]

Fantastic news!!! Thank you!

 

[Sea]

Wow, thank you for explaining that! Not to get off track but do you have ME yourself besides being an advocate?

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

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

 

[mfairma]

This disease and this community has long been subject to the whims of much more powerful actors. We have been managed, politically, in the past and, while these events are potential signs of good faith and will hopefully result in actual change, we would be naive to not realize that the nature of our management by those still much more powerful actors will change as the community gains more political capital. Put another way, these changes may represent good faith, but they might also derive from the realization that the government is incredibly vulnerable politically in how it has mismanaged this disease over the last thirty years and that covering institutional ass now means actually giving patients some things we want. When the community has enough political capital, the government has to be seen to be doing more to have any semblance of plausible deniability.

Maybe this is not politically possible, but good faith, to me, starts with honesty and a frank, open, and widely disseminated apology to patients whose lives have been ruined by governmental incompetence and to researchers whose careers have suffered from their decision to dedicate themselves to this space. Even to the extent that a direct apology is not politically possible, that degree of honesty should be reflected in how our disease is discussed.

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 would like to see real commitment to this disease and real engagement with the patient community, and I am willing to believe that this is the start, but what I see is a long legacy of bad faith, obfuscation, and mismanagement and a patient community that remains far too vulnerable to the whims of other actors.

 

[catly]

I just posted a comment on there thanking Dr Collins and the NIH - a good place to do it publicly.

Good idea!

Personally I want to thank @viggster for reporting this news and for his efforts to help make this happen. It took a small village of truly dedicated people, I think, to finally move the needle..now let's hope we've reached the top of the mountain and things will only get better from her.

My fingers are doing a happy dance tonight.

 

[viggster]

I would like to see real commitment to this disease and real engagement with the patient community

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.

 

[Roy S]

Thanks, Brian. This sounds quite promising.

The RFA could be great if the grant proposals get reviewed fairly. I think we need a transparent process and a Standing Study Section. I was lobbying for that starting in 1991. If they go through the problematic Special Emphasis Panel we may get the continuing results of world-class researchers being turned down unfairly.

I'm also glad to hear about the Wessely School losing influence.

 

[Aurator]

Hello all -

I just got off the phone with Francis Collins regarding today's announcement. I am convinced we've made a bureaucratic breakthrough at the NIH. For 30 years, they have ignored our illness - that changes today.
Brian

Thanks for wanting to share this great news with the people on Phoenix Rising right away! It's nice to know we matter.
As for making the breakthrough, I'm not sure about the "we"; I think it's mostly down to that chap who asked nicely for a few dimes a while back.