“We are going to ramp this up.” Francis Collins
Should you attend the MillionsMissing protest for more funding? Consider this. It’s been almost a year since NIH Director Francis Collin’s pledge to greatly expand chronic fatigue syndrome (ME/CFS) funding prompted articles such as these:
- NIH announces new effort to tackle chronic fatigue syndrome (Washington Post)
- A Boost for Chronic Fatigue Syndrome Research (Atlantic)
- Chronic Fatigue Syndrome Research Gains Funding, And Controversy (NPR)
Collins said medicine “desperately needs some new ideas” in the fight against this disease, that the NIH hadn’t focused enough attention on ME/CFS and that increase in funding “will be substantially greater than the current five or six million a year”. “We are going to ramp this up.” he said.
Eleven months later there’s not been much ramping. One intramural study and one failed initiative to add limited funding to past projects constitutes all the ramping the NIH has done over the past year. The key part of the effort to add extramural funding that was expected to be approved early this summer has languished.
This is not to blame our supporters at the NIH. We probably wouldn’t have this opportunity if not for Vickie Whittemore and others, but it is to suggest that effort to increase funding has probably run into some roadblocks. In fact, given our history, we can assume the NIH is littered with them and we probably should have expected this. The NIH was never going to suddenly change it’s spots after 25 years, and blow ME/CFS an extra $50 million or $20 million. Vickie and others are fighting a difficult battle and they need our support.
The big boost in public interest in chronic fatigue syndrome is over.
IOM “Bounce” – Gone – The chart to the right that shows google search results for chronic fatigue syndrome is another reason we need to support the MillionsMissing protest effort. That big spike to the left corresponds to the publication of the IOM report in early 2015 That presented a window of opportunity and Vickie Whittemore, Dr. Koroshetz and Dr. Collins ended up grabbing it.
We were a hot item for awhile. The danger always was, though, that as we faded from the scene our support would fade with it. The mediocre support the Institutes, for instance, gave for a small effort to add funding to past studies was not a good sign. This long delay in adding the real meat to NIH funding for ME/CFS is not a good sign.
The NIH Funding Boost – Going, Going, Gone – Another reason to support the effort now is that the NIH got its biggest increase in funding ($2 billion) in twelve years this year. That means the NIH finally does have uncommitted money it can use for ME/CFS. We don’t have to take funding from another disease. It may be ten years before we get another funding boost like. If we don’t get our funding now, it’ll be ten times tougher when the NIH returns to it;s normal funding cycles.
Francis Collins – Going, Going, Gone? – Francis Collins hasn’t mountains for us yet, but he is the first NIH director to publicly support ME/CFS. In four months with a change in administrations he could be gone. We need to get locked into the system before he disappears.
In short, the stars have aligned for us this year. We had the IOM report, extra NIH funding, and a supportive Director. If we don’t take advantage of this opportunity it’s probably going to be ten times harder the next go around.
The last MissingMillions protest garnered Jen Brea and other advocates a meeting with a top NIH official. The truth is that no disease can make it without the NIH. We need their funding – and we need to keep that kind of pressure on.
The MillionsMillions protests are taking place in 25 cities across the U.S. and Europe on Sept 27th.
Find out more about them and how to support them here.
Do you think our money all went to Zika virus research prevention and treatment?
And Nath, Whittemore et al, haven’t been jumping around making a lot of noise and waving the Naviaux discovery in the NIH’s face? Pathetic.
They don’t want to fund any research for me/CFS, last year Francis announcement was totally politic, do to the findings around the world that confirmed me/cfs as a real illness with deep immune disfuntions and suppression , they announced this sooo initiative and especial interest in me/CFS to cover their (. Parts ) in case it finally blow up somewhere else what the illnes is and possibly the cause , but now they are doing thesame thing they been doing for 4 decades, playing around, thesame thing they did with XMRV, they made seem that they were helping and when they had a chance they put their plan in motions and sorrounded by conspirancy . Small control studie they made XMRV, MLV desapear…it wasn’t mantioned any more until they came up with the new system to clean the blood banks and vaccines from the MLV related RETROVIRUSES!.. This is exactly thesame .. They keep ignoring playing around untill they see a chance to step back again .. They have control manipulated all researchs in general thruout this last 4 decades .. That’s why none of the AUTO-NEURO IMMUNE DESEASES HAVE A CAUSE!!!! haven’t you notice that ????in all of them it’s been suggested retroviruses!!! But GOV always dissmise that posibility.. And stays like that DESEAES WITH OUT A CAUSE
Wow, it has been almost a year already since Collins excitedly called Bob Miller about the “new focus” being given to CFS? And what have they accomplished? I’ve seen one grant go out to Bateman and some vague references to a multi-site monitoring team. I’m wondering where the other $1.997 billion dollars in increased funding for NIH went?
Seems like more of the same like the last 2 decades to me. All talk and no action.
Actually we do have the big intramural study and we have gotten some other grants but our key need is a big grant package for research and that obviously hasn’t occurred.
Fiction is the unused part of the problem.
Despite spending the last fifteen years of my life, WITH CFS, I can’t get enough traction on selling Pride’s Children: PURGATORY, which has a CFS main character (one of the three).
Without proper public appreciation, all we have is a whiny bunch of sick activists, EASY to ignore. As soon as the bump goes down.
Fiction is the underutilized way to get past the barriers people put around their hearts and minds – and wallets.
Remember Tom Hanks – and The Philadelphia Story making AIDS human?
I have been planning to donate some of the earnings – but they aren’t to the point where there is enough money to make that worthwhile.
Documentaries are fine. But FICTION – books and movies – get under the skin in the EMOTIONAL way that allows people to identify with a character.
Any thoughts about publicity? I’ve done all the obvious – and am still meeting blank walls.
BTW, look it up on Amazon – check the Look Inside feature. I took the trouble to learn to write well before publishing.
Thanks for your efforts Alicia. I had not heard of your book and I will read it. I have written articles about CFS and had them published, but my experience is that editors and publishers are not interested in this topic, perhaps because they are ignorant about our illness. If only you could convince Hollywood to make it into a movie…
Thanks for the update Cort. It’s easy to feel like we’ve “lost” in regards to receiving the more immediate or larger change we expected with the IOM report et al. But 2016 still has a valuable quarter left while Collins is still there, maybe at least the SMELL of the IOM report is still in the air, and people can still say “I think I remember hearing about that disease somewheres!” w/out having a negative reaction. In fact the reverse, we may have more people rooting for us than we think.
I know it may seem like this petition dropped off the planet as well as its author, but we’re both still here. I’ve been sick the last few months and unable to “campaign” but am back and ready to use this petition in any capacity before the year is over. It is, after all, addressed to Mr. Collins. I still think nearly 40,000 public signatures (2,000 printed pages of names, and probably 4,000 pages of attached stories/comments) could make some real impact for us before the years end. I am open to ideas before sending it off to Collins and Burwell inside a box filled with 400 of my Rx bottles. (Going for impact) Of course, in the least it can still be signed (below), otherwise, I am open to ideas in ways to use our largest petition to date. We still have time, and I haven’t given up hope that more leverage from the PATIENT community can apply the final needed pressure to receive the attention, change, and funding this disease deserve.
Oops, forgot to attach petition. Please sign if you haven’t, and consider that along with protests, reports, and everything else this year, this could be our final collective voice that so many more are capable of adding to. Larger numbers (signatures) mean more attention, circulation, and more PRESSURE to change.
https://www.change.org/p/increase-research-funding-for-me-cfs
Thanks Mary – Your petition has been incredible! Everybody please sign it and please support MEAction in the MillionsMissing protest however you can. Let’s get the funding we need to crack ME/CFS wide open and enable us to recover our health….Enough already with this disease!
I’ve been sick for 30 years now. I have a doctorate level degree and haven’t been able to work all these years. I’m angry and sick of politics and the NIH. Why don’t we do what other groups have done to get publicity and get the families and the sick (in wheelchairs if necessary) to march on Washington & become a major cog in its everyday wheel.
My brain is 1/2 what it used to be. Broken cog.
No more need for research or funding.
Just take Viread and raltegravir and get better. On dr’s advice obviously only. A few days per week. Learn and adjust depending on how you react.
Then look at Lipkin in the eye and say ‘what?’
Then shake Mikovits and Ruscetti s hands.
Something very very wrong has gone on.
Oh dear…..Watch the psychiatrists retire!