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

[leela]

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.

This made me cry. For myself, for all who have been lost, for all those who are suffering now and will continue to suffer from pain, disability, poverty, estrangement, isolation, stigma.
I hope there is some kind of miracle for all of us, I really do. A crazy, magical miracle.

 

[Sidereal]

NYT journalist Carl Zimmer has been tweeting about this to his 244k followers. Phoenix Rising world domination soon to follow.

 

[jimells]

Phoenix Rising world domination soon to follow.

This really made my day. Thank you.

 

[BurnA]

I hope there is some kind of miracle for all of us, I really do. A crazy, magical miracle.

Let's hope rituximab and or cyclo is that miracle ! It has worked for some already so miracles do happen !

 

[aquariusgirl]

I thought Lipkin's quote in the wash post article said it all: show me the money. The NIh is 20+ Years late to the game. They've botched God given opportunities ( cluster outbreaks)....it's gonna take some serious money to make headway for the next Generation of patients. Anything else is just talk ...

 

[Thomas]

Next time Collins calls someone don't forget to remind him about Ampligen. We already have a proven treatment for ME for a nice percentage of sufferers.
Rituximab is exciting and all but it's still a ways away and can be much more toxic and dangerous than Amp, to the best of my knowledge.

 

[Ecoclimber]

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.
Thoughts?

@viggster
Given the thirty year track record within the NIH, I speculate. One of the common political tactics is to publically state we are going to inititate this or that program but then fail to fund the program. "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 to fund the program."

Concerning the statement above in quotes that the NIH could be receiving $3.75B over a base of about $30B, one wonders why Collins would have difficulty obtaining funding for this latest ME/CFS research initiative if indeed this is a new dawn in the era of ME/CFS research. There shouldn't be any hesitancy on part of Collins to fund these programs. The fact he alludes to a fudning issue and gives me pause with regards to playing political semantics. After 30 years, NIH has to prove their sincerity. Past behavior is a predictor of future behavior.

As as an example, NIH allocates $668 microbiome research project funding distributed to research institutes across this country to investigate how the microbiome plays an integral part within diseases. You would think they could peal away $1 million for Ian Lipkin's ME/CFS microbiome project. Nope, even though it was chump change for them. Lipkin had to solicit funds from the patient community after being turned down twice on grant reviews. I'm skeptical. Talk is cheap. Some of the top researchers in the country submitted ME/CFS NIH grants but were turned down because sitting on NIH grant committees were dentists and psychiatrists who denied their requests into infectious diseases research for ME/CFS research.

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[Sidereal]

I suppose we should be grateful they haven't parked us in the NIMH.

 

[Ecoclimber]

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.
Thoughts?

@viggster
Given the 30 year track record with the NIH, I spectical. One of the tactics is to state we are going to inititate this or that program but then fail to fund the program. NIH has a huge surpluse of funds and so $70 -$100 million is chump change to them, I have concerns.

 

[Sean]

Scepticism is certainly warranted until the money is on the table.

But at this stage, overall indications are that things are (finally) moving firmly in our direction.

If they try to pull a swifty on us now, after all the noise they have made in the last year or so about wanting helping us, it would be a spectacular own goal, especially given the increase in their budget.

We should know soon enough.

 

[Scarecrow]

As as an example, NIH allocates $668 microbiome research project funding distributed to research institutes across this country to research how the microbiome plays a part in diseases. You would think they would peal away $1 million for Ian Lipkin's ME/CFS microbiome project. Nope, even though it was chump change for them. Lipkin had to solicit funds from the patient community after being turned down twice on grant reviews. I'm skeptical. Talk is cheap.

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Yes but that was two years ago. Hornig & Lipkin were awareded about $750K a few months ago and they can request more. Isn't that indicative that things have been changing?

 

[Bob]

For 2016, NIH could potentially get an additional $3.75B

Well, that's $3,750 million of new money, so it's a great opportunity to set aside $250m of that for ME. It would still leave them $3,500m of new money for other projects.

 

[Sidereal]

Yes but that was two years ago. Hornig & Lipkin were awareded about $750K a few months ago and they can request more. Isn't that indicative that things have been changing?

That money ultimately came from some special grant after special pleading, not the huge NIH microbiome initiative.

 

[Scarecrow]

Yes, I appreciate that but it's still encouraging. Sorry for being misleading.

 

[Sidereal]

Yes, I appreciate that but it's still encouraging. Sorry for being misleading.

Yes, I agree, these recent developments are encouraging.

 

[viggster]

Concerning the statement above in quotes that the NIH could be receiving $3.75B over a base of about $30B, one wonders why Collins would have difficulty obtaining funding for this latest ME/CFS research initiative if indeed this is a new dawn in the era of ME/CFS research.

NIH might get some new money from Congress - that will certainly help our cause. It's still up to Congress. And there is a lot of bureaucracy that goes into setting up a new RFA. The amount of money dedicated to the new intramural program is hard to calculate - it includes staff time + access to the $bazillion Clinical Center. When the RFA is announced (I have no idea when that will be), there will be a dollar figure attached to it.

 

[Kati]

NIH might get some new money from Congress - that will certainly help our cause. It's still up to Congress. And there is a lot of bureaucracy that goes into setting up a new RFA. The amount of money dedicated to the new intramural program is hard to calculate - it includes staff time + access to the $bazillion Clinical Center. When the RFA is announced (I have no idea when that will be), there will be a dollar figure attached to it.

This begs for each and every one of you American citizen to speak to your Congress representative and demand funding for this disease. It makes a difference.

 

[Adrift2inAZ]

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

@viggster i'm sure many of us would love to be studied. do you know how we offer ourselves to the NIH for this?

I

 

[Adrift2inAZ]

Let's hope rituximab and or cyclo is that miracle ! It has worked for some already so miracles do happen ![/QUOTE

I hope the NIH finds a way to test those of us in every state with ME/CFS because I am not very hopeful if they can only test subjects in Maryland with it. Otherwise, we would have to wait another 30 years, and I have already decided I won't do that. My life has been over for 10 years and that is long enough for me.

 

[acer2000]

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.

This is going to be really important. It would be a travesty to not find a way to increase extramural funding. We have several of the best scientists of our time (maybe ever) chomping at the bit to do major studies into this illness. We need to get funding to them to strike while the iron is hot.