Now that CFSAC's over, what should we do?

[alex3619]

Committees, organizations and individuals have limited scope and focus - I agree with Tina that we need to be focussed in our aims on a case by case basis, though I think that different aims can be held with respect to different organizations. So I would suggest that we try to develop a priority list not for the whole, but for organization by organization, and issue by issue. There is no problem in making it the same message if the organizations are closely linked though. Bye, Alex

 

[alex3619]

. I also posted my own personal takeaways from the meeting over at http://www.occupycfs.com/2012/06/18/cfsac-takeaways/ if anyone is interested.

I was impressed with your article. There were certainly jaw dropping moments when nobody made obvious comments or asked obvious questions, or were unsure about things that most patient advocates could clearly explain, as both you and a commentator to your article noted. Opportunities are lost. I wonder if people are intimidated somehow?

 

[jspotila]

Does anyone know how the agenda is set? Who is involved? At what point in time is it decided, etc.

Meeting agendas must be approved by the DFO (Dr. Nancy Lee). This is what the committee bylaws state:

The DFO shall approve the agenda for all meetings. Items for the agenda may be suggested by the standing subcommittees and submitted to the DFO and/or the Committee Chair by the chairperson of each standing subcommittee. Items also may be suggested by non-members, including members of the public. The DFO will distribute the agenda to the members prior to each meeting and if available, publish an outline of the agenda prior to the meeting date.

I think Marti Bond said that the agenda was sent to committee members by email a week or two in advance. Does anyone remember when the agenda was posted publicly?

Someone else in the thread talked about the committee's budget (sorry! don't remember who!). The charter states:

ESTIMATED ANNUAL OPERATING COST AND STAFF YEARS
The estimated annual cost for operating the Committee, including the approved stipend and reimbursement of travel expenses for the members, but excluding staff support is $95,637. The estimate of annual person-years of staff support required is 1.5, at all estimated annual cost of $116,413.

 

[Cort]

Cort - can you give us a couple examples of direct action movements? Are you suggesting that a emailing, phoning, faxing campaign to Sebelius or Koh might move this? Or are you saying that because the CFSAC is structured differently that this type of action won't work?

Because CFSAC has no teeth, I'm wondering if there are certain changes to their charter that would make them stronger, changes that we could advocate for in the next renewal (next year).

I do feel like we are taking a step forward by inclusion of patient advocacy groups on the panel. There was also some agency reps ((Susan Meier of the NIH for one) that welcomed the opportunity to meet with patient groups now. I think our patient group reps should consider meetings with as many of these agencies as possible before the next CFSAC so that we can get better versed on the obstacles before us. There is alot of educating that can be done in both directions right now.

The FDA Stakeholders movement has resulted in the FDA agreeing to hold a Stakeholders meeting to address ways to accelerate drugs for ME/CFS.....That could have huge ramifactions for Ampligen and other drugs that show up.

CFSAC has the power of making recomendations. Patient advocacy has the power of bringing enough heat that officials respond. Patient advocacy can be sustained and organized - it can target different areas in the government and use a variety of means to do that. CFSAC gives recommendations twice a year and that's it. CFSAC needs the power of the patient community behind them to help them make a difference - that's pretty darn clear given how little effect they've had.

 

[Cort]

I was impressed with your article. There were certainly jaw dropping moments when nobody made obvious comments or asked obvious questions, or were unsure about things that most patient advocates could clearly explain, as both you and a commentator to your article noted. Opportunities are lost. I wonder if people are intimidated somehow?

I think they're just not aware - they have their own busy lives...they fit CFSAC in where they can - they don't necessarily read up on the issues - nor do they necessarily know the history...one member, which I will never name, told me he/she reads the materials for the agenda on the plane ride over....

They do work in committees between meetings - so there's alot they know that we don't know - and probably vice versa for many of them...

 

[alex3619]

Hi Cort. I agree with your analysis - but this should not be the case. Its another factor in disempowering the committee. Its understandable, but that does not make it a good idea. People on committees need to be knowledgeable, especially with millions of lives on the line. This another reason why I do not like the idea of lots of uninformed doctors working on a case definition. It takes a certain amount of knowledge to become effective.

However this leads me to an idea. In addition to agendas for change, should we be thinking about briefing documents on various topics? Then distribute them to all committee members a week prior? Or if in doubt, distribute them to the organizers? These are not unintelligent people, their only lack is relevant experience and knowledge. While the average doc might protest if I gave them a briefing document every visit, I think a committee member might welcome it.

Bye, Alex

 

[Sasha]

In addition to agendas for change, should we be thinking about briefing documents on various topics?

I think that's a very good idea.

 

[SpecialK82]

Meeting agendas must be approved by the DFO (Dr. Nancy Lee). This is what the committee bylaws state:



I think Marti Bond said that the agenda was sent to committee members by email a week or two in advance. Does anyone remember when the agenda was posted publicly?

Jennie - Thanks for answering my questions regarding the agenda and for correcting my budget figures.

It seems to me that a question for Dr Koh/Sebelius is " The taxpayers are spending $116,413 per year on an advisory committee whose recommendations go largely ignored. Can you explain how our government can afford to pay for information that it won't use?"

As a PWC, I of course, want action on the recommendations, and as a taxpayer - this really burns me.

I would love if we could research the recommendations over the last couple of years from other advisory committees and follow how they were addressed. This could be a good contrast against Jennie's testimony of the CFSAC recommendations. We might also be able to discern how other committees phrased their recommendations to get more action.

 

[Cort]

However this leads me to an idea. In addition to agendas for change, should we be thinking about briefing documents on various topics? Then distribute them to all committee members a week prior? Or if in doubt, distribute them to the organizers? These are not unintelligent people, their only lack is relevant experience and knowledge. While the average doc might protest if I have them a briefing document every visit, I think a committee member might welcome it.

Bye, Alex

I think it could only help

 

[Ember]

I think it could only help

I'd feel confident about that only if we were willing to fact-check our documents to establish their consistency with findings in the scientific community. Otherwise we add to the confusion.

 

[Mark]

I'd feel confident about that only if we were willing to fact-check our documents to establish their consistency with findings in the scientific community. Otherwise we add to the confusion.

Agreed: the idea of forming small teams, or working groups, is to thrash out the details and drive up the quality, so we can produce documents of higher quality and accuracy than we can do as individuals. Strong, accurate, evidence-based documents are much harder to ignore; the same is true for carefully-crafted recommendations that have had a lot of thought going into them by a number of people over a period of time: I think these are key areas where we can support CFSAC in producing more successful recommendations.

 

[medfeb]

I agree with the comments made by Alex, Ember, Mark and others about the utility of having high quality, well crafted briefing documents or position papers on various critical issues. Many of these issues have long histories or are complex scientifically or politically and having a small team who fully understands a given issue produce a high quality briefing/position would make a difference in the CFSAC.

But the CFSAC only meets for a total of 4 days a year and, as much as we may want it to be different, recommendations from the CFSAC have not gone anywhere historically.

We should work on changing that. But in the meantime, the real power of having such high quality, well informed briefings/position papers is to inform the discussions we can have today to drive change outside of the CFSAC. For instance, we have requested a stakeholder meeting with the FDA to discuss acceleration of treatments. We have also requested a meeting with key representatives from across DHHS to begin to formulate a strategic, coordinated and fully-funded response to the ME/CFS crisis. Imagine having the discussion at those meetings informed by such high quality position papers.

 

[jspotila]

Jennie - Thanks for answering my questions regarding the agenda and for correcting my budget figures.

It seems to me that a question for Dr Koh/Sebelius is " The taxpayers are spending $116,413 per year on an advisory committee whose recommendations go largely ignored. Can you explain how our government can afford to pay for information that it won't use?"

OMG I LOVE that!

I would love if we could research the recommendations over the last couple of years from other advisory committees and follow how they were addressed. This could be a good contrast against Jennie's testimony of the CFSAC recommendations. We might also be able to discern how other committees phrased their recommendations to get more action.

I am actually researching this right now. I've already done some basic comparison work, and have a couple committees that I will delve into more deeply. I'm planning to write one or more articles about this, because comparing our committee to others will really highlight the dysfunction (I suspect). No timeline on finishing, because this meeting generated so. many. topics. But I will post the link on PR once I've got it done.

 

[BEG]

CFSAC has the power of making recomendations. Patient advocacy has the power of bringing enough heat that officials respond. Patient advocacy can be sustained and organized - it can target different areas in the government and use a variety of means to do that. CFSAC gives recommendations twice a year and that's it. CFSAC needs the power of the patient community behind them to help them make a difference - that's pretty darn clear given how little effect they've had.

(bolds are mine.)

Phoenix Rising has the membership to certainly throw some weight around. ( Thanks, Cort, for giving out that figure at the beginning of your presentation. I believe it really got some attention.)

That being the case, how will a Phoenix Rising advocacy committee be formed? Should we express an interest
on this thread? If anyone knows, please explain. Thanks! P.S. I'm interested.

 

[Seven7]

I just posted this in another thread but I agree that a committee should be form.​

​

Prep work: List things that need discussing and that can be presented as recommendation by community.
Prioritize List, Estimate time per task.

1) We make a list of all the people we consider CFS specialist even w different views.
2) Present the prioritized list of issues we consider only specialist can help with: Maybe case definition/ name/ primer review/ Owner of disease.
2 b) This can be loaded and given in advance in a collaborative place for CFS specialist where the discussion can start.
3) We COORDINATE getting this people on webminar (less cost) or in a room (if we can find the Funding).
4) Get mediator and present the subjects, they will not all agree but there is major acceptance of certain things. Capture those, and other issues in a voting process. Those with quorum move on to be presented to CFSCA as recommendation petitions. ALREADY w most accepted views from "knowledgeable people".

Then they can do education and present materials to the "not knowledgeable".

WE need to take the lead on making the facilitation of making this things happen.​

 

[firefly]

OMG I LOVE that!



I am actually researching this right now. I've already done some basic comparison work, and have a couple committees that I will delve into more deeply. I'm planning to write one or more articles about this, because comparing our committee to others will really highlight the dysfunction (I suspect). No timeline on finishing, because this meeting generated so. many. topics. But I will post the link on PR once I've got it done.

I like this too!

And.... I think it's key for us, as a community, to remember that scoring a rhetorical point that makes the CFS community feel better is easy.

The real question is, what will motivate someone to action. It's possible that shaming will do that. But I'm not convinced. As we think through this, I would propose that every advocacy statement be subjected to a rigorous testing process:

1) Why are we saying this?
2) Who are we saying this to?
3) What other audiences will be privy to it?
4) What is our goal, (real, tangible, actionable) for saying this?

4) is the most important. What is the goal? It could be press coverage, or committee politics or any number of other objectives. But there has to be a tangible goal in mind, otherwise it will make the CFS community say, "YEAH!" but achieve little in terms of outcomes.

 

[firefly]

To elaborate a bit more on this. My sense is that shaming only works when there is a real threat behind it -- major press coverage, possible damaged reputation, ecc. In these cases it can be effective, and yet, even then, it alienates the person or group that has been shamed, who is then even less likely to want to provide help.

Unless there is someone higher up in the authority ladder that can step in to change the situation, the cause ends up falling on deaf ears and hardened hearts. And the higher-up person needs to be convinced as well. Unless they feel empathy (or political pressure) there will be little forward movement.

That said, I'm a huge fan of direct advocacy campaigns. The challenge is getting the tone right, selecting the audience, and thinking through in advance what the objectives are and whether the campaign, whatever it is, is likely to accomplish them.

 

[Bob]

Wow, what a constructive thread!

I can't get involved in this project but I just want to offer a few thoughts, in case helpful...

1. About the name issue. I agree with the posters who said that focusing on the name issue would be a distraction, and not the most productive way to spend our energy. There are some very long threads on PR, hundreds of posts long, which discuss the name issues exhaustively. We discussed such things as: the historical nature of 'ME'; outbreaks of ME; the symptoms of historical 'ME'; the exact nature of 'ME'; the difference between 'CFS' and 'ME'; whether there is a distinct disease called 'ME' (as opposed to it being part of a heterogeneous syndrome); whether ME is a subset of CFS; and what would happen to current 'CFS' patients if a clinical definition excluded them from an 'ME' diagnosis. etc etc etc.
It's an exhausting process to discuss it all, and there's a lot of strong disagreement. We did pretty much come to some consensus* in those threads, based on the few things that we could agree on, but it took a lot of work, and not everyone is going to agree about any 'consensus'.
So I personally think it would be more productive to use our energies elsewhere.

If I remember correctly, the consensus* that we were able to agree on was that new diagnostic criteria (preferably the ICC, but the CCC would be a good start) should be used instead of, or alongside, the Fukuda criteria, in all research. (So maybe that's something we should be asking the CFSAC to focus on?) There wasn't much else that everyone agreed on.

2. With regards to diagnostic criteria, it seems sensible to me for the CCC or the ICC, or both, to be used for research purposes. They are instantly available, they create a helpful subset of patients, and the CCC are already being widely used. So why go back to the drawing board, when so much work has already been carried out on these definitions?
The CFSAC committee were discussing the difference between criteria for 'clinical' and 'research' use.
On this forum, we were pretty much able to reach a consensus* about using the CCC/ICC for research purposes but not for clinical purposes. Many people were seriously worried about being left out of a more 'exclusive' clinical criteria for 'ME' and being abandoned with a scrap-heap diagnosis of CFS.
So for clinical purposes, I haven't got a clue. But I'm not sure it's as urgent as getting an agreement on research criteria? IMO, the most important thing for us all, is to make sure that the scientific research is carried out correctly (with CCC or ICC), and then that, in turn, will lead to better diagnosis and treatment.
Something to note is that the CFSAC will probably be studying the Leonard Jason paper that one of the members was talking about (I'm not sure of his name, but maybe it was: Steven P. Krafchick) when they were discussing diagnostic criteria, so it might be worth us finding out exactly what paper that was, posting a link here, and reading it.

3. In case anyone didn't understand what the CDC are doing with regards to the criteria... Then this is my understanding...
The CDC have contacted a number of the high-profile CFS/ME doctors in the US. So I imagine that the CDC have contacted Klimas, Bell, Peterson etc. And they have asked them to supply a comprehensive description of their patients' illness. They are free to include any patients that they believe have CFS based on their own understanding of the disease, and to describe the symptoms and nature of the illness.
I don't know what the exact process is, but the CDC will then study the data from all the different cohorts, and use it to create a new definition from that evidence. They seem to be approaching it fairly scientifically, rather than ideologically. I might be wrong about this, but I also seem to remember that there was talk that the CDC were thinking about a name change (I imagine to something like ME/CFS), which would probably come about when the new criteria are published.
It seems pretty inadequate that the CFSAC have not been keeping up to date with the CDC's plans.
As the CDC have already embarked on a project to create a new criteria, then why are the CFSAC only just getting around to thinking about recommending a new criteria be created or adopted? It seems like a serious lack of coordination going on, and an overlap in terms of what different government bodies are working on.
Maybe it could be a project of ours to find out exactly what the CDC's plans are, re criteria and name?
If it's not already published, then we could email the CDC, or write to them, or failing that, do you have an equilalent of 'freedom of information' requests in the US? (Or we could ask the CFSAC to ask the CDC for exact details of their project.)
If the CDC have already embarked on a comprehensive project, then there seems little point in coming up with yet another set of diagnostic criteria, when we already have the CCC and ICC to chose from.
It would still be interesting to know what the Lenny Jason paper was though.

4. With regards to briefing documents, and including references to evidence.
It might seem like a daunting task if you haven't written like this before, but once you start doing it, you get used to it very quickly.
All it means, is that for any assertions/opinions/statements you make, you just include a reference to any evidence (e.g. a scientific paper, article, set of diagnostic criteria, or a patient survey etc.), so that the reader knows that you haven't just plucked your information out of the air.
Scientists are used to reading scientific papers which usually back up all their assertions with references, and they like to base their decisions on evidence, so I think this would be helpful.


* It might be inappropriate for me to talk of a 'consensus' on the forum, but in the discussions that I've been involved with, we did manage to agree about a few things (and there were some extremely strong opposing views) after exploring the subject exhaustively.

 

[Mark]

Mainly just to echo that Bob's recollection of all those discussions is correct: the discussions he's referring to involved a very wide range of opinions and perspectives, and the one common denominator that everyone was able to agree on was to support the use of ICC/CCC for research.

With regards to this, I see dangers...

The CDC have contacted a number of the high-profile CFS/ME doctors in the US. So I imagine that the CDC have contacted Klimas, Bell, Peterson etc. And they have asked them to supply a comprehensive description of their patients' illness. They are free to include any patients that they believe have CFS based on their own understanding of the disease, and to describe the symptoms and nature of the illness.
In simple terms (but I don't know what the exact process is), my understanding is that the CDC will then study the data, and look for the overlapping symptoms from all the different cohorts, and create a new definition from that evidence. They seem to be approaching it scientifically, rather than ideologically. I also seem to remember that they were also talking about a name change (i.e. I think I read something about including the term 'ME'), which would probably come about when the new criteria are published.

If the CDC's approach is indeed simply (and simple-mindedly) to look for "the overlapping symptoms" in patients from several different doctors, then this may set up the process to produce a definition that includes only the "lowest common denominator" symptoms, and thus end up with something more like Oxford due to the diversity in symptomology.

I would disagree that the CDC approach as described by Bob is "scientific rather than ideological". It seems to make assumptions which are consistent with an ideological approach, in looking for those "lowest common denominator" symptoms and in assuming a single diagnosis.

A genuinely scientific approach IMO would be to conduct an extremely broad and detailed study of symptomology, based on very detailed questionnaires, including historical data for patients and including test results, and then perform cluster analysis on that data with the aim of subgrouping the patients. Such an approach would be avoiding the ideological assumption that these patients all have one disease, which should be defined solely by those symptoms that they all have in common - which seems to just be the ideology of the waste-basket all over again.

And if they are considering naming the definition they come out with as "ME", and if it is going to be a less strict lowest-common-denominator definition than the CCC or ICC, and thus even less strict than the historical definition of ME, then alarm bells are ringing loud and clear for me. Because if they are going to end up with something half way between Empirical and CCC and call it "ME", and use that still-mixed cohort for all research for the next 20 years, then that would seem a perfect way to continue to hide ME inside a mixed and incoherent definition for the next couple of decades. I don't like the sound of it at all...we should all be demanding subtyping and cluster analysis, IMHO.

PS: Kogelnik and Baraniuk both seem to be going down that subtyping and cluster analysis route with some success in Baraniuk's case already: my optimistic hope is that Baraniuk's work will result in a 4-category subdivision of ME/CFS which can be objectively validated by cerebrospinal protein patterns, and thus in a scientifically-based group of definitions at long last, but again if it comes just after the CDC have produced another new definition for the next 20 years we may be stuck with that definition long after the science has moved on, once again...

 

[floydguy]

Like Apple and some politicians one lesson is to pick a few things and just hammer away at them. My take as I mentioned before is that I don't think lobbying for huge increases in money is what we can hope for from government in the near term. Minimizing the damage government does is probably a good start, ie terminate funding ridiculous studies, CDC silliness, ensuring that strong MDs and advocates are on all appropriate committees, etc.

In the medium term we might be able to swing the government into being more helpful but I think the best goal now is to figure out how to start changing perceptions of what "CFS" is and what it isn't. When the breakthroughs come from the more private initiatives like CFS, Simarron, etc then government will hopefully be in a better frame of mind to commit resources for bigger studies, drug trials, etc.

It might be interesting for Cort or other advocates to do a deep dive with some of the private groups to find out if there are things that could be done to help them. Of course, money always comes up but I don't know if I've ever seen a deeper discussion then "money is always nice". Maybe there could be some "off the record" advice too on what kind of advocacy might help them.

I'd rather help Montoya, Klimas, Enlander, CFI, Simarron - if they wanted our help, then try to figure out how to extract money and good will from Congress, NIH, CDC, etc.