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HHS, NIH, AHRQ and CDC respond to Aug 2015CFSAC recommendations

jimells

Senior Member
Messages
2,009
Location
northern Maine
Management and leadership of CFSAC will remain within the Office of the Assistant Secretary for Health."

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.
 

Denise

Senior Member
Messages
1,095
@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).

My support of studies hinges on accurate characterization of the patients.
I do not believe that case definitions such as Oxford or Empirical characterize ME and studies that do not require PEM would not (in my view) characterize ME either.
If a study purports to research ME, then the definition used should be one that identifies patients who have ME rather than for instance, fatigue for x period of time.

I agree with @mfairma - it is entirely reasonable for patients to want research into the disease they have and not research about things that are overly broad and would thus not yield information that would directly impact those with ME.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
@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.

There are very excellent reason's for the mistrust from this community.

Given the history of research into ME the community of people who continue to suffer without treatment or even validation via causation need to be sure the monies earmarked for ME research actually do research on the illness ME

Do you see the problem with the carte blanche approach?
 

halcyon

Senior Member
Messages
2,482
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.
It became quite clear that HHS was actually in charge of CFSAC when they censored their P2P comments.
 

joshualevy

Senior Member
Messages
158
Perhaps you can quote where I stated this? If not, please refrain from mis-characterizing my comments.

Sure, it's from comment #37 in this thread, where you said:

And it's important to keep in mind that NIH management appoints dentists to those panels - the members don't appoint themselves.

Sounds like you are specifically calling out NIH management to me.
 
Messages
5,238
Location
Sofa, UK
(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.
Apologies for the delayed reply @joshualevy.

In the time since I posted, two of those you cited earlier have pointed out that you've misrepresented their comments, which is always rather unpleasant for the person misrepresented. For jimells, you turned this comment...
And it's important to keep in mind that NIH management appoints dentists to those panels - the members don't appoint themselves.
...into this conclusion:
jimells is against any RFA that is run by NIH management.

Clearly an unjustified leap.

For mfairma, it appears to be this comment...
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/
...that prompted this conclusion:
mfairma is against an RFA that is run by HHS.

Again, a big leap.

You made a similar leap about the whole 'advocacy community' in general when you said this:

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 think what people have said quite clearly, here and elsewhere, is that there are big risks in the raw concept of an RFA for 'ME/CFS' without a series of issues being addressed - and actually I would hope that many of those concerns could potentially be addressed in the detailed wording of precisely what the RFA is for. There is no value for the ME population in an RFA that results in studies looking at a broad Oxford-like cohort that does not include subgrouping by other ME definitions in its design; such research would likely be harmful to progress, and indeed the P2P report and IOM report both acknowledged this. There is no value for the ME population in an RFA that results in a research program managed, approved and peer-reviewed by people who believe that ME/CFS is a psychosomatic condition and who reject any proposals that don't fit their world view - and we've got clear evidence that that is precisely what has happened in the past (and likely still does). Such a program would be harmful to the interests of ME patients and set back the research evidence base even further, because it would just result in yet money being funneled towards more of the same old quacky bad 'science' from psychosomatic theorists, and we're already drowning in that sort of garbage.

I think those concerns are very real, and they are all shared by the vast majority of us here. An RFA on its own won't solve our problems, and it might even take us backwards rather than forwards. But that is not at all the same thing as asking for 'earmarked' research, for specific people only, and with the 'exact details' of the research being specified in advance. Nobody that I know of is asking for that.

I do think it's quite possible that you may have a valid and valuable point about this, somewhere along the line, if there are certain restrictions on what terms are feasible to expect in an RFA, because at some point fairly soon I expect it's going to be very important to campaign for an RFA and it's going to be really important to make sure that the wording is both something that is feasible (i.e. something that the authorities are going to be able to translate into their own bureacratic context and accept) and potentially positive for ME patients (something that results in actual worthwhile research being conducted on a population of patients that at least resembles a cohort of ME patients).

How we figure out quite what that request should be is a sufficiently important question that I think if you have some insight into what will and will not be seen as acceptable, then that would potentially be valuable to the community. But I think you need to be a lot more precise and logical in how you make your point if you're going to have any impact, because unjustified leaps in your reasoning and interpretation, and mischaracterisations of patient advocates, aren't likely to help in getting your point across.
 
Messages
5,238
Location
Sofa, UK
Hi @Nielk, again my apologies for the delayed reply...

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
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...:)

 
Messages
50
Location
Midwest USA
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...:)



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."

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.

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.

The more patients that join together to share this info to doctors, social media and websites, the louder the impact without costly campaign dollars.

-- Tracey Smith
 
Messages
5,238
Location
Sofa, UK
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."
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.

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.
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.

Every indication so far is that the CDC's process will be completely open and transparent, we've had strong assurances about that, and it's also been a very inclusive outreach so far, as evidenced by the invitation extended to MEadvocacy. However open and transparent MEadvocacy makes its own process, far fewer people will be engaged in it than are engaged with the workgroup. It will be a process that in practice involves only a small subset of the patient and advocacy community, and few will believe that the outcomes of MEadvocacy's process are representative of the community's views.

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.
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.

The practical issue that pragmatic advocates have to face in relation to criteria and subsets is how to bridge the gap between what we think we understand about subsets of ME/CFS, and what can be backed up with sufficient evidence to be acceptable to authorities whose entire infrastructure is based on evidence-based practices. We can't wish away that gap, or tackle it with polemic; we have to get our hands dirty and engage with those who are refusing to grant anything without evidence that meets their standards. It's a highly unsatisfactory situation, because of the long history of politically-motivated distortion of the funding and direction of ME/CFS research, but I really don't think there's any way around it. The world of medical science and state healthcare authorities is not going to change the way it works just for us. Ideals are very important, but I do think it's necessary to live in the real world if you really want to change it. Feet on the ground, head in the clouds...:D

The more patients that join together to share this info to doctors, social media and websites, the louder the impact without costly campaign dollars.
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.

I think you've got to be in it to win it, and honestly I think MEadvocacy's decision not to take part was a really awful and very disappointing decision. But it's your decision to make, and we'll see how things turn out. I just hope MEadvocacy isn't ever hoping to argue that its opinions have been marginalised or excluded from the debate, because declining that seat makes a clear statement that you're opting out and excluding yourselves. Since there are MEadvocacy members who are also Phoenix Rising members, I will still be arguing that we should try, where possible, to incorporate your views alongside the views of other Phoenix Rising members. But if, at the end of the day, your voice isn't included in what comes out at the other end of the workgroup process, you'll have nobody to blame but yourselves.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
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."

Have you considered distributing the IACFS/ME document "Primer for Clinical Practitioners"? It's already written, plenty of people have found it useful, and it's based on published research. If you could get it distributed, and even more important, get the doctors to read it, we would be far ahead of where we are today.

Even better would be to get CDC to post a link to the document, just like they used to link to psychobabble documents - but now I'm just being delusional. Never mind.

There's no need for all groups to adopt the same policies and play the same roles. "How to Survive a Plague" did a good job documenting the creation of the TAG (Treatment Action Group) and how it split off from ACT-UP. Each group had a separate but equally important role to play: the TAG worked closely with FDA, while ACT-UP continued to agitate in the street. We desperately need a group of at least slightly-able folks who can be a physical presence that can't be easily ignored by HHS; that's not going to be Phoenix Rising.

I would love to go to DC and burn Collins and Fauci in effigy, but I haven't been more than ten miles from home in two years, so I can't do it. We sure need to find some folks who can.
 

Kati

Patient in training
Messages
5,497
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.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
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 are not in an "either - or" situation. We need multiple groups with different strategies. Union negotiators don't win concessions from the boss without picket lines and people willing and able to show up.
 

Nielk

Senior Member
Messages
6,970
@Mark

There is historical evidence which has been carefully documented by Hilary Johnson in ‘Osler’s Web and Mary Dimmock in ‘Thirty Years of Disdain’ that the US health governmental agencies have willfully acted in denigrating the disease they found at Lake Tahoe and have consistently tried to bury the true acquired neuroimmune disease ME for several decades.

They found hard evidence that the CDC knew exactly what disease they were looking at in the 1980’s but, dismissed the findings of the clinicians treating the patients at the outbreak site. By willfully disregarding their findings, the heads of the agency, decided to bury the true extent of ME. They named it purposefully a demeaning name and created ridiculously broad fatiguing criteria. They then continued this malfeasance for the next thirty years.

When there was any outcry from the patient community about this malfeasance, HHS squashed it. When the voices got louder, their tactic changed and they started with a new deceitful direction; giving the illusion that they wanted to hear the community’s voice. HHS formed the CFS Coordinating Committee (CFSCC) for stakeholders to ‘participate’ and come up with recommendations to HHS. This group was eventually disbanded and CFSAC was established. These advisory groups have been puppet courts and have not resulted in anything meaningful except for HHS to give evidence that patients had a seat at the table.

Continuing with their aim of burying the true disease, NIH continuously refused to fund serious biological research. The outcome of this has been that after thirty years, we have very weak evidence of anything - just as HHS wished. The ‘evidence based” medicine that you so highly talk about as a necessity, is actually hogwash when it comes to ME/CFS. The small scale studies, based on overly broad criteria do not show evidence of anything.

The government knows this and that is why they never accepted any of the consensus criteria created by ME/CFS experts. In 2013, there was a consensus in the expert, advocate and patient community to adopt the 2003 CCC criteria. HHS laughed at this and said NO, we will create our own government criteria based on this poor evidence, regardless of the fact as, Nancy Lee stated in a CFSAC meeting that HHS is not in the business of creating criteria.

You stated; “The world of medical science and state healthcare authorities is not going to change the way it works just for us. Ideals are very important, but I do think it's necessary to live in the real world if you really want to change it. Feet on the ground, head in the clouds..”

The US health agency has changed the way they do business when it comes to this disease. The majority of criteria for diseases in this country are created by the expert medical establishment who has witnessed countless patients and seen first hand what the disease does to them. All we are asking is for HHS to do the same with us. Nothing different. We want the same funding as other similarly burdened diseases and we want the same attention to our disease as to for example MS. We want criteria created by our experts and we want the original name back. Our heads are not ‘in the clouds’.

The insanity is doing the same thing over and over and expecting different results. You think that this is the first time that CDC is asking stakeholder’s input into their website and education?


Eileen Holderman, patient advocate who served on CFSAC for four years, was also the chair of the subcommittee for education, patient care and quality of life. Among the many tasks of this subcommittee was to come up with recommendations to CDC regarding their website and medical education.

You can watch here Eileen talking about this subcommittee’s efforts - http://www.tubechop.com/watch/7667117

Did CDC heed the recommendations of this seriously staffed subcommittee? You know the answer to that.
This past year, CFSAC was tasked to come up with recommendations regarding the IOM report. CFSAC formed a working group and created many good recommendations, some applied to the CDC. What was CDC reply?


MEadvocacy did not take the invitation to join the CDC workgroup lightly. You have disrespectfully stated ‘I think you've got to be in it to win it, and honestly I think MEadvocacy's decision not to take part was a really awful and very disappointing decision’. I guess you have not carefully read our reasons for opting out which we have blogged about here and here.

It is abundantly clear, from Dr. Unger’s words, that the results of this Technical Development Workgroup is a foregone conclusion. The CDC wants to roll out and disseminate the IOM conclusions and they want to avoid any dissention so they invited advocates and patients groups to the ‘table’. Except the only thing on the menu is - IOM.

As we have stated in our latest letter to Dr. Unger; ‘ it simply makes no sense for MEadvocacy to be involved in a process that disseminates information to the medical community about a disease that, based on abundant past experience with other definitions, is likely to be harmful to ME patients.’

As far as your arrogant prediction of the future, and MEadvocacy’s ineptitude and sure fire failure, I have nothing to say but, ‘the best way to predict the future is to create it’. MEadvocacy will continue their efforts to create the best future possible for patients suffering from the neuroimmune disease ME. We do not believe that taking part in disseminating information on a broad criteria which will bring further harm to patients is the way to go.
 

usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
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.
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).
 

usedtobeperkytina

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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.
Sing it sister!

Complaint heard: "You don't consider patient or expert views before you act."
Response: "Ok, we're about to act. We'd like to include patient and expert views."

Then when asked to participate and give input as decisions are being made, the answer is no. But, what would be the response to that? "You refuse to contribute your influence when we gave you the opportunity, so, I guess we'll just move on with our actions based on what we think."

Whatever demand we have before we will agree to be part of the decision making process of the CDC is in denial of the power such a demand has. Will it stop what they do? Can it be replaced with something that will have the same or more credibility as the CDC? Do we think the experts we consider credible have the same credibility to the medical professionals in general? Or, that we do?

The reason CDC has the power here is because #1, We don't have a medical professional society that already has credibility making firm statements about the disease. The vacuum of influence in this matter gives CDC's statements/policies/positions on this disease a louder presence than would be the case with other diseases that have (widely respected) medical societies speaking. 2. They are the only ones speaking with the credibility respected by mainstream medical professionals. The CDC is considered credible by doctors in matters of other diseases and public health. 3. They have the resources and money of the federal government. 4. The news media quotes them because they are considered credible and experts (even if they aren't).

I see two choices, and they are not mutually exclusive: Get another medical professional society to embrace this disease so they can use their credibility to trump the CDC. Or, influence what the CDC does/creates/puts out.
 
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