jimells
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jimells is against any RFA that is run by NIH management.
Perhaps you can quote where I stated this? If not, please refrain from mis-characterizing my comments.
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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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jimells is against any RFA that is run by NIH management.
Management and leadership of CFSAC will remain within the Office of the Assistant Secretary for Health."
@Mark do you see the problems of trying to get strong support for an RFA?
Denise will support it, but only if the funded studies use a ME/CFS definition that she agrees with.
If you look at this thread, and similar threads in the past, it is clear that the ME/CFS community will only support "earmarked" research. That is funding for very specific research, where the person doing the research and the exact details of the research are selected before funding is allocated. That's what the ME/CFS community wants (assuming it can decide on the person and the research details).
@Mark do you see the problems of trying to get strong support for an RFA?
Denise will support it, but only if the funded studies use a ME/CFS definition that she agrees with.
JayS doesn't think any RFA will work.
jimells is against any RFA that is run by NIH management.
mfairma is against an RFA that is run by HHS.
If you look at this thread, and similar threads in the past, it is clear that the ME/CFS community will only support "earmarked" research. That is funding for very specific research, where the person doing the research and the exact details of the research are selected before funding is allocated. That's what the ME/CFS community wants (assuming it can decide on the person and the research details).
Of course, "earmarked" research is the ultimate in pork barrel politics. It is very hard to get approved. You need to find a senior congressman, with a lot of political power, to help push through the bill to specifically fund your research project. It's the kind of politics that is done in the middle of the night, by power brokers, in smoky rooms, and I don't think those are the kind of people who are likely to care about ME/CFS.
It became quite clear that HHS was actually in charge of CFSAC when they censored their P2P comments.Isn't CFSAC supposed to be independent of HHS, that is, isn't that the whole bloody point of its existence? And here we have in writing that it is not independent. "Management and leadership" is very different from "support", which is what HHS is *supposed* to do.
Perhaps you can quote where I stated this? If not, please refrain from mis-characterizing my comments.
And it's important to keep in mind that NIH management appoints dentists to those panels - the members don't appoint themselves.
Apologies for the delayed reply @joshualevy.(to jimells)
Sure, it's from comment #37 in this thread, where you said:
...
Sounds like you are specifically calling out NIH management to me.
...into this conclusion:And it's important to keep in mind that NIH management appoints dentists to those panels - the members don't appoint themselves.
jimells is against any RFA that is run by NIH management.
...that prompted this conclusion:For some more context on what patients might worry about in the idea of giving HHS free rein, please consider skimming the following document. My mom, Mary Dimmock, just released a shorter version: http://forums.phoenixrising.me/index.php?threads/thirty-years-of-disdain-how-hhs-buried-me.37318/
mfairma is against an RFA that is run by HHS.
If you look at this thread, and similar threads in the past, it is clear that the ME/CFS community will only support "earmarked" research. That is funding for very specific research, where the person doing the research and the exact details of the research are selected before funding is allocated. That's what the ME/CFS community wants (assuming it can decide on the person and the research details).
I do want to say that I'm not naive about this, nor am I blind to the fact that nothing has actually happened yet. We have some words, some positive indications, we have the involvement of ME/CFS organisations and advocates in revising the CDC's educational materials, we have the IOM and P2P reports as an admittedly imperfect resource on which to build and make progress, but as yet we have seen nothing about money, and we have zero end product as yet. I know it: as yet, we have nothing tangible.I and many in the ME community in the U.S. do not share your optimism about the current direction of NIH toward this disease. There have been vague promises by Collins and others with no follow up yet.
It is actions that matter not mere words. Just reading the replies to CFSAC's recommendations of august 2015, is proof that it is business as usual.
In addition, the stubborn insistence by HHS to control the criteria of this disease will guaranty more of the same burial of the historical disease ME.
In reply to CFSAC recommendation #1 (August 2015) regarding NIH research directions and funding, NIH states:
But, the fact that the disease is heterogeneous is the result of HHS refusal to define the disease as it should be. Myalgic encephalomyelitis needs to be removed from this heterogeneous umbrella criteria with it's own criteria and research direction aimed at this cohort. That is why an RFA using the overly broad criteria will not result in meaningful findings.
In addition, in response to CFSAC recommendation #5 that the disease be assigned to the National Institute of Neurological Disorders and Stroke (NINDS), NIH responds with: (my bold)
So, in 2016, NIH states regarding ME/CFS that one of the driving pathobiology behind it is depression!
There is more -
CFSAC recommendation #6 to assign a cross agency leader gets the following response by NIH: Which basically means that NIH has done enough with their announcement that they will focus on ME/CFS. No need for action.
More -
CFSAC recommendation #7 to fund ME/CFS like other similarly burdened disease with $25 milllion. NIH replies:
Same old, same old. It is not NIH's fault that there is no increased funding, it is the victim's' fault. It is the fault of the poor quality of research applications. (think Davis and Lipkin)
Furthermore and the clincher -
CFSAC recommendation #4: 1-CFSAC recommends that federally-funded research specify use of the 2003 Canadian Consensus Criteria as a research case definition for patient selection. NIH response - 0 (no mention of the CCC!
So, as outlined above - same old, same old
Hi @Nielk, again my apologies for the delayed reply...
I do want to say that I'm not naive about this, nor am I blind to the fact that nothing has actually happened yet. We have some words, some positive indications, we have the involvement of ME/CFS organisations and advocates in revising the CDC's educational materials, we have the IOM and P2P reports as an admittedly imperfect resource on which to build and make progress, but as yet we have seen nothing about money, and we have zero end product as yet. I know it: as yet, we have nothing tangible.
And I'm as disappointed as you in some of the comments from US health authorities recently, although I'm not convinced that the kind of separation of 'ME' from 'CFS' that you're hoping for is a realistic goal until we have clear scientific evidence that such a separation is justified, indicating exactly where the line should be drawn (e.g. a biomarker to distinguish a subset, and high quality evidence indicating why this does represent a distinct disease). On the other points you've made, I think I entirely agree: the same old responses, and it's not good enough.
If all of the work of the last few years does not translate into meaningful results fairly soon, then I would suggest that there would come a point at which the whole of the patient and advocacy community would change its approach from trying to work with the authorities to something very different. There is a limit to how long this current set of initiatives can maintain the qualified support that they currently enjoy from the major ME/CFS organisations. We have a year's work ahead for the CDC educational materials workgroup, and we will all be able to see, transparently, how that process unfolds - and at the end of it, we will all see what comes out of it. If the community is not satisfied that the results are a significant step forward, then there will be repercussions. If, by the time the CDC's workgroup process concludes, there has been no sign of any increase in research funding, no change in the numbers and quality of approved ME/CFS research proposals, no major visible progress of any kind, then I for one would be saying that we can only be strung along for so long before we have to start considering alternative strategies.
But I do think that at a time where we are getting opportunities for a seat at various tables, and for patients, advocates and organisations to have their say, and when we are hearing really significant promises from people like Collins, there is far more value to the community in at least trying to make all that work than there is in opting out of the process and hoping to have some kind of impact in some other way.
I think MEAdvocacy's statement on opting out illustrates this rather well: at the end of it there's a general call (which I'm paraphrasing, hopefully not too inaccurately) for ideas on alternatives to the CDC process that could disseminate accurate information about ME to the medical world. If anybody does come up with a more effective means of disseminating information to the medical world, that can compete with the CDC's educational materials and program to roll them out to health practitioners, then I will be more than surprised. There's obviously no such potential idea out there to be had: nothing is going to get information through to medical professionals better than the CDC's website and an expensive campaign to publicise it widely, so for me there's no question: we have to be in there, making our case and doing whatever we can to make those educational materials as good as we can possibly get them.
And if at the end of all that, roughly a year from now, it turns out we have all been completely ignored and used, and the educational materials are garbage, then I would predict that everyone would then be agreeing with you that the US health authorities are irredeemable and we'd all be campaigning together against them. But I don't think they are going to let that happen, I don't think we are going to let that happen, and I think we are going to move things forward significantly.
Which reminds me (for the umpteenth time) of the chorus of this rather wonderful piece of music...
By taking up the seats that have been offered to us, there's nothing whatsoever to stop MEadvocacy, Phoenix Rising, or anybody else from doing whatever they want to prepare information and get that information out while the workgroup is ongoing. Taking up one's seat doesn't mean 'waiting another year' in any sense. MEadvocacy can of course produce something as a template for the CDC to use, whether it takes up its seat or not. Since it hasn't taken up its seat, though, it would have to find somebody else who does have a seat, who thinks that MEadvocacy's template is better than their own, and who agrees with it, to present it to the workgroup. If it turns out that nobody on the workgroup likes that template (which is not unlikely) then the CDC won't even be looking at it. So Colleen's response makes no sense to me at all.Hi Mark,
Gabby has kindly shared this thread with our MEadvocacy advisory group since some group members are not PR members. You have made very valid points. One of our group's members, Colleen Steckel has a great response that I concur with: "You may be willing to wait another year... I'm not. If it turns out they put out a good product.. swell. All the better. But we are going to be working to get the information out now. Maybe it won't have the weight of the CDC... but it will be a template for the CDC to use."
Yes, the workgroup will be able to see anything you produce; the workgroup members will be able to see all kinds of things. You can send them to whoever you like. If they do like it, they can take it to the workgroup. All true, but you'd have had a much better chance of any of this happening if you were on the workgroup.And I would like to add, that the CDC will be able to view any of the suggestions or information/ pamphlets that we produce this year. We are wanting an open, transparent process that is external to the control of the CDC. So if need be we can email our blogs, info, etc. directly to Dr. Unger and her assistants. Also, anyone has the ability to take what MEadvocacy is doing directly to the CDC workgroup.
I have a lot of sympathy with your reasoning there. There does seem to be a history where the criteria can be broadened without any justification but first class evidence is demanded to tighten them back down again towards where the definition started. It doesn't seem right to me, but from what I understand, this kind of situation is not unusual in medical science and there are justifications for the whole approach that I don't yet understand - I'm in conversations about this at the moment, as it happens, to try to understand where this dynamic is coming from scientifically, and to figure out what needs to be done to get us out of the mess that medical science has got itself into here.In addition, there is a concern about not singling out a subset (aka ME) from the group without biomedical research to back it up. The CDC and the Wessely school widen their research criteria without biomedical proof to murky the waters of the true disease. The ME definition and criteria has much more substantial biomedical reasoning and research behind it. If the researchers had not started using the CCC for their research, they would not have been finding significant statistical results.
Please be serious: do you really think you can galvanise the wider community to disseminate the information you produce in such a way as to have even a tiny fraction of the impact that the CDC's educational materials will have? If you really, seriously believe there is even a small chance that is going to happen, I suppose there is nothing I can say except to predict that this is not going to happen and hope that you reconsider your approach in a year or two's time when you look back and honestly assess what you've actually achieved.The more patients that join together to share this info to doctors, social media and websites, the louder the impact without costly campaign dollars.
But we are going to be working to get the information out now. Maybe it won't have the weight of the CDC... but it will be a template for the CDC to use."
Having a seat at the table allows you a voice.
There is a saying that applies here: ' if you are not at the table, then you're on the menu'
Indeed a missed opportunity to speak directly, instead of organizing protests, for which patients have little energy or ressources. But I am prepared to be wrong on this one.
We have one. The IACFS/ME. But they struggle. In my opinion, we should be advocating for one of the specialty professional societies to embrace the disease, such as one for neurology (ME is classified as neurological).I don't know why ME/CFS clinicians and researchers don't create a clinician-based organization similar to the concept and goals of ILADS.
If this were done, potentially - someday - such an organization could bring meaningful pressure to bear on the inertia that today characterizes the ME government landscape. I think at the very least it would garner more attention from media.
If leverage on govt institutions failed, it might even unilaterally generate actionable diagnostic and treatment guidelines - like the ICC, but with the strength of an institution, not just a consensus letter.
Or both. It doesn't have to be one or the otherWe have one. The IACFS/ME. But they struggle. In my opinion, we should be advocating for one of the specialty professional societies to embrace the disease, such as one for neurology (ME is classified as neurological).
Sing it sister!Having a seat at the table allows you a voice.
There is a saying that applies here: ' if you are not at the table, then you're on the menu'
Indeed a missed opportunity to speak directly, instead of organizing protests, for which patients have little energy or ressources. But I am prepared to be wrong on this one.