Mary
Moderator Resource
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- 17,385
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Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Several years ago, the NIH P2P report recommended that for needed progress to occur the ME/CFS community should agree on a single case definition (even if it is not perfect). Remember this:What we’d like to do is have the science drive these kind of questions as opposed to coming up with a convention, which is I think important that the definitions be standardized so that people know what they’re talking about, but not necessarily coming down on one definition and saying you can only study this one patient group. Because I think that may prevent us from seeing things that are really important in this condition. So I agree with the point, but I think that for the research we, NIH generally, in all cases, is not really in the position to be prescriptive and say, ‘This is what you have to do.’ We really leave it up to the scientists. But we are in this instance pushing them to do this in a collaborative fashion to avoid what’s happened in the past which is one definition for one study, another definition for another study, and then you really can’t combine the data. (39:25 – 40:31).
Where’s our stakeholder-driven consensus definition for research? Apparently, the NIH ignores its own recommendations.To accelerate the progress of ME/CFS treatment, we recommend the following overarching research strategies:
1. Define disease parameters. Assemble a team of stakeholders (e.g., patients, clinicians, researchers, federal agencies) to reach consensus on the definition and parameters of ME/CFS. A national and international research network should be developed to clarify the case definition and to advance the field. NIH Institutes and Centers not presently represented in the Trans-NIH ME/CFS Working Group should be incorporated to capitalize on the tremendous opportunities to learn from other disciplines and diseases (e.g., Gulf War Syndrome, Lyme disease, fibromyalgia, multiple sclerosis, and Parkinson’s disease) (pp. 9-10).
Dr. Koroshetz himself alludes to this problem when he speaks of “putting particular money, not really to solve the...we don't think that this amount of money is going to solve the problem:”If in fact, more money had been allocated to support these centres.... There was a lot of good science that was left on the table that could have been picked up. There were applications out of Stanford; there were applications elsewhere. None of that, you know.... And hopefully we’re going to see that there’s going to be an expansion of the program.
Dr. Koroshetz says repeatedly during the telebriefing that “this is just a beginning (46:23).” But he claims that NIH can't do more:We hope that this seven million, seven million a year for five years, so 35 million...but the key thing is that we think if we can start these consortia, that is seeding the research landscape, and the hope is that this will bring in more people from the centres and from outside the centres.... This is going to take real hard work, and a stroke of genius and a lot of luck, I think.
The NIH must be familiar with this telling graphic. It's been used to argue for a 25-fold increase in ME/CFS funding to bring it in line with NIH allocations for MS and other diseases:The multiple sclerosis field, which was quite small when it started in the 70s, is now what we want the ME/CFS field to be at. But the only way we can do that is to get really good scientists interested in it. As you know, with a payline of 12 percentile, you need to submit eight grants to get one. And that’s...we’re resource limited in this country. And I think a lot of really good science does not happen. But there’s not much you can do about it without more resources (56:37 - 57:16).”
In assessing our situation, Dr. Koroshetz dismisses the relevance of NIH data on burden of disease. We’re supposed to believe that systemic bias at the NIH doesn’t exist.All the diseases that we take care of are terrible. So it’s not like you can say that one is worse than the other.... The solution is to keep growing the science pool so they’re competing against other diseases. Now I would also say that we have at NINDS about 400 different diseases, many of them are fatal disorders...diseases, and none of them get the money that is equivalent to the burden of disease (53:10 – 54:06).
Dr. Koroshetz offers patients some advice. Lobby scientists: "But I think, for you, your passion, you have to make that infectious. Be persistent and get other people in your camp doing the science and competing for grants. That will guarantee that ME/CFS research will advance at the pace you want (57:23 – 57:40)."
The sad reality is that as more time goes by, what little optimism I have dwindles further.
Do you mean with the NIH in general or the intramural study or just in general? I've taken a few steps back recently and, it looks to me like it could be a long, long time before we get to understanding and treatments. The Ritux thing really shocked me tbh and I have reservations about the NIH intramural study, but I won't even know if those are warranted for years. Very frustrating right now.