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

viggster

Senior Member
Messages
464
Likes
3,807
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. For the first time since the 80's, NIH will bring ME/CFS patients into the Clinical Center. We have a champion inside NIH, Vicky Whittemore, who wants to crack this illness - and she has support from the top to do so. The new director of NINDS is interested in studying ME/CFS. This is huge. For decades, there has been a "don't go there" sign at NIH. That sign just got taken down. Having an intramural NIH research program dedicated to ME/CFS is a big deal.

Getting a nice pot of money to give to outside researchers is a bigger challenge. Collins is working on it, but the NIH gets its budget from Congress - and Congress is a mess. But he assures me people at NIH are working to launch a robust extramural program.

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.

Brian
 

Denise

Senior Member
Messages
1,095
Likes
3,427
Thanks for talking with him!

I would very much like to see $$ for biomedical research backing up any talk from NIH.
I am not saying NIH is the enemy - just years and years of disappointment and empty words have made me jaded.

That said - I will help if NIH's words align with action.
 

Sasha

Fine, thank you
Messages
17,863
Likes
34,206
Location
UK
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.
 

A.B.

Senior Member
Messages
3,780
Likes
23,060
The good news just keeps on coming! Things are really starting to change.

Some time ago it seemed impossible but ME/CFS may well become a hot area of research in the near future. There are after all many patients, the economic losses are very large, the illness is quite possibly very curable with the right knowledge (no or little permanent organ damage) and researchers can still make new discoveries precisely because we understand so little about it. A lack of political will or perhaps just lack of awareness was clearly the last obstacle and that is changing also. Collins is certainly in a position to transform the situation.
 

Gingergrrl

Senior Member
Messages
14,056
Likes
41,946
I got two emails this morning from different ME groups & newsletters that I belong to re: these potential changes and funding from the NIH and it is great news!

@viggster do you (or did you?) work for the NIH? I don't know your background (so don't want to ask you a bunch of stupid questions due to my ignorance!) but thank you for all that you are clearly doing on our behalf.
 

viggster

Senior Member
Messages
464
Likes
3,807
I got two emails this morning from different ME groups & newsletters that I belong to re: these potential changes and funding from the NIH and it is great news!

@viggster do you (or did you?) work for the NIH? I don't know your background (so don't want to ask you a bunch of stupid questions due to my ignorance!) but thank you for all that you are clearly doing on our behalf.
Yes, I worked there from 1998-2000 as a writer and press officer at the National Cancer Institute.
 

viggster

Senior Member
Messages
464
Likes
3,807
Thanks for talking with him!

I would very much like to see $$ for biomedical research backing up any talk from NIH.
I am not saying NIH is the enemy - just years and years of disappointment and empty words have made me jaded.

That said - I will help if NIH's words align with action.
The NIH funds research in two ways: It hires scientists and builds labs in Bethesda, and it gives money to researchers at universities. Today's announcement is about a new program inside NIH to study ME/CFS right there on campus. There is money behind that but it's hard to get a figure. It's about having people inside who are spending time on it and using the many, many resources at their disposal. Scientists at NIH have access to untold millions of dollars of equipment - and all of that can now be put toward studying ME/CFS.
 
Messages
3,776
Likes
14,728
Location
Monmouth, UK
But I hope today's announcement marks the start of a new relationship between patients and the NIH. They are not the enemy.
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?

Things are moving forward, and there will be more opportunities soon for patient advocates to be involved in how NIH studies this illness.
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.
 

Sasha

Fine, thank you
Messages
17,863
Likes
34,206
Location
UK
but we should recognise and appreciate today's huge step. Any suggestion how?
Couldn't agree more - if people who have wronged you suddenly see the light and start doing the right thing, you don't start off by rubbing their noses in how badly they treated you before.

This is especially true for organisations, where new people replace the old, problematic ones. Institutions have no memories.

We need to help enthuse them now.
 

Rrrr

Senior Member
Messages
1,562
Likes
703
YAAAAAAAAY!!!!!! only 26 years lost! hopefully not too many more.

@viggster
with all the $$ going into brain research, did you happen to mention to dr collins that we have real brain issues?
 

Rrrr

Senior Member
Messages
1,562
Likes
703
this movement forward had a lot to do with IOM and P2P, but i also think that @viggster 's relationship with the NIH/Collins was key (he worked there in the past), as well as Ron Davis's relationship with Collins. personal relationships are important. and both viggster and Ron Davis got great press attention. media attention, when it is on our side, can be a very very very powerful tool.

MORE THAN ANYTHING THO, a big thanks to ALL the many sick advocates who pushed and pushed these last number of decades. there are too many to list. but you all did this. it was your work. good work!!!!!!!! THANK YOU.
 

viggster

Senior Member
Messages
464
Likes
3,807
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.
 

Gingergrrl

Senior Member
Messages
14,056
Likes
41,946
Yes, I worked there from 1998-2000 as a writer and press officer at the National Cancer Institute.
Wow, thank you for explaining that! Not to get off track but do you have ME yourself besides being an advocate? Also, do you think Dr. Ron Davis' study will be funded now? Last question, I promise!

ETA: sorry if cross posted!