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Invitation to Participate on CDC's ME/CFS Technical Development Workgroup

Messages
5,238
Location
Sofa, UK
I thought this might be a nice Christmas present for the community...:)

I received this letter, and the project description below, from Dr Unger a week ago. Phoenix Rising is invited to nominate a representative to serve on a Technical Development Workgroup (TDW) with a brief to help identify needs and priority topics for ME/CFS information and educational materials. The aim of the project is "to assess and revise existing educational materials and create new materials to incorporate the recommendations of the 2015 Institute of Medicine (IOM) report".

Having watched CFSAC meetings for several years, I am just stunned to learn of this opportunity. It's further evidence of what increasingly looks like a genuine and significant change now taking place in US policy regarding ME/CFS. It's clearly an opportunity that the community must grasp with both hands.

The board have briefly discussed our options, and in the last few days I've had some brief conversations with a few US advocates about how we could approach this. The board is inviting input from our members about how best to take advantage of this opportunity, and of course the main task before us (with a deadline of January 4th) is to identify someone to act as Phoenix Rising's representative. We want our representative to be fully engaged with the forum community throughout the process, and our thinking is that our representative's brief will be to solicit and represent the views of our members, through forum discussions.

We do not believe the representative needs to be an MD or other medical professional, because the initiative is soliciting input from the patient community. We do think it would be far preferable if the representative were a US citizen, but I will ask Dr Unger whether that is an absolute requirement. I am not sure that a vote would be feasible, especially given the timeframe, but we will address the question of how to choose our representative as we progress.

Merry Christmas everyone! With the international momentum we're now seeing in ME/CFS advocacy, I think we can all look forward to an exciting year ahead! :)

COLLABORATION TO DEVELOP MYALGIC ENCEPHALOMYELITIS / CHRONIC FATIGUE SYNDROME (ME/CFS) EDUCATIONAL MATERIALS


Project Overview


In 2014, the Institute of Medicine (IOM) convened an expert committee to examine the evidence base for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) ¾ a persistent complex multi-system illness characterized by significant functional impairment accompanied by profound fatigue that can be made worse by seemingly minor physical or mental exertion. Symptoms include sleep abnormalities, cognitive dysfunction, autonomic manifestations, pain, and others. Between 836,000 and 2.5 million Americans are believed to have ME/CFS, which can severely impair their ability to live normal lives. Yet many people struggle with symptoms for years before receiving a diagnosis. Less than one-third of medical school curricula and less than half of medical textbooks include information about ME/CFS. Although many health care providers are aware of ME/CFS, they may misunderstand the disease or lack knowledge about how to diagnose and treat it. Such gaps in understanding lead to delayed diagnoses and inappropriate management of patients’ symptoms.

The IOM’s expert committee addressed these issues in its 2015 report, Beyond Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: Redefining an Illness. Among other recommendations, the report’s authors propose new diagnostic criteria to increase the likelihood of timely diagnosis and care. They also propose a name change to systemic exertion intolerance disease, or SEID, to better reflect the disease’s main characteristic of an adverse response to any level of exertion.


What is the purpose of this project?

The purpose of this project is to update the Centers for Disease Control and Prevention’s educational materials and web content on ME/CFS, informed by the IOM report’s findings and recommendations and the perspectives of patients, providers, researchers and federal partners.

What are the project’s key features?

Under contract to CDC, a team from McKing Consulting Corporation will convene telephone or in-person meetings of an ME/CFS Communications and Education Steering Committee (composed of federal agency representatives) and a technical development workgroup (including patient and provider representatives). McKing will assist in gathering stakeholder input regarding the IOM recommendations, conduct a needs assessment regarding the current state of ME/CFS clinical management, and identify priorities for updating CDC materials on ME/CFS or SEID.


What is the project timeline?

Meetings of the steering committee and technical development workgroups focused on specific topic areas will be convened in early 2016, with a needs assessment conducted at the same time. Throughout 2016, the team will work with stakeholders to draft, revise, and finalize selected priority education materials ¾ including web content, brochures, a toolkit, infographics, and fact sheets ¾ that can be shared with different audiences. The goal is to have these materials ready for CDC clearance in time to be available for distribution and posting by the end of 2016.


What are the expectations of steering committee and technical development workgroup members?

The Steering Committee and Technical Development workgroup will be asked to participate in conference calls to plan the process for identifying needs, to prioritize topic areas and review materials and representatives will participate in one in-person joint meeting.
 

Attachments

  • TDW Invitation_Berry.pdf
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A.B.

Senior Member
Messages
3,780
The board have briefly discussed our options, and in the last few days I've had some brief conversations with a few US advocates about how we could approach this. The board is inviting input from our members about how best to take advantage of this opportunity, and of course the main task before us (with a deadline of January 4th) is to identify someone to act as Phoenix Rising's representative. We want our representative to be fully engaged with the forum community throughout the process, and our thinking is that our representative's brief will be to solicit and represent the views of our members, through forum discussions.

January 4th is not much time. Too little for a lengthy democratic process. You may need to take decisions on behalf of the community. I can't tell from your text if you were planning to do this anyway.

I think it's clear what the key points we want to make are, but community input on the key points would be nice to have.

Also please tell us what you have discussed so far and how you're planning to find an advocate.
 
Messages
5,238
Location
Sofa, UK
January 4th is not much time. Too little for a lengthy democratic process. You may need to take decisions on behalf of the community. I can't tell from your text if you were planning to do this anyway.
That's right A.B., the timescale is very tight and it's not exactly a good time of year to be dashing around trying to sort something out...even if we didn't have end-of-year admin to deal with...:rolleyes:

Even if that were not the case, I'm not convinced that a formal democratic process is appropriate for PR in situations like this, for several reasons.

One reason is that we don't have a well-defined 'electorate' or membership. Forum members perhaps tend to assume that they are the PR membership, but what about our newsletter subscribers, Facebook supporters, and the people who have donated money to us? There's overlap between those groups, but we do know for sure that there are supporters of PR who are not forum members, including people who have donated to Phoenix Rising. On top of that, we regularly find people who have multiple accounts (though we hope we'e weeded out most of those, there are bound to be some left), and we have thousands of members who aren't regularly active...there's a real danger that the theoretical forum membership doesn't really represent our active members.

We've thought about this whole issue of 'democracy' within PR a lot over the years, in various contexts, and the main conclusion I've drawn is that before we can really start thinking about 'elections', we would have to have a membership scheme of some kind, where people pay to be 'full members' of Phoenix Rising...and we'd have to have added benefits of membership to justify that. I'd like us to go down that road eventually, ideally, but there would be a lot of work involved; we'd probably have to rewrite our constitution and get that approved by the IRS, for one thing.

Another reason is that we aren't in a situation to justify elections until we have more than one candidate! In many of the situations it is more a case of casting around and searching for anybody who is a vaguely suitable candidate, who has the time available and is willing to do the job concerned. That applies to board membership too: as far as I can recall, we have never (yet) turned down anybody who's asked to join the board, simply because nobody ever has...it doesn't seem to work like that. In this case, once again, the problem really is going to be finding someone who's able to do this job, not choosing between the candidates.

One more reason is that the kind of people who would give up their time to do a job like this would often be very much put off by the added hassle of having to go through an 'election campaign', which could be adversarial, stressful and divisive for the community - and it would also take up a lot of people's time and energy which could be better used on other activities. We did once attempt an initiative like this in relation to the PR board of directors, and we got quite a few nominations, but since none of the people who were nominated were prepared to do the job, we never got as far as a vote!

So, finally, the bottom line on elections/democracy is that we'll cross that bridge when we come to it: as and when we're in a situation where multiple people offer to do a particular job for which we have to choose just one person, we'll assess the situation and decide how to decide. I think that's highly unlikely to ever happen though. The kind of people who do jobs like these are always, in my experience, people who do so as a service to the community, and who have busy lives already: in a situation where there's more than one such person, we would most probably all sit down together (over video chat) and have a talk about it and agree who's in the best position to do a good job at serving the community in that particular role.

I think it's clear what the key points we want to make are, but community input on the key points would be nice to have.
I expect that community input is going to be absolutely vital for us in this case. The letter mentions reviewing drafts: provided we are at liberty to post those drafts publicly (or to members-only) then we can enlist the help of the community in reviewing them. A large part of the job of the representative will be getting that input and relaying it back to the meetings. But this depends on how open the CDC's process is going to be. I expect that most of the other reps won't be working that way: they will be discussing what goes on at the meetings with their boards, probably, but not so much with their members. I think this is probably something a bit different that PR can bring to this exercise, and I hope it will be seen by the CDC as a very valuable thing, because the impression I get is that they really do want some community engagement in this process.

So actually this is another reason why the board (like previous PR boards) sees 'elections' as a bit of a distraction here: in fact we are all genuinely committed to involving our forum members and supporters in anything like this, to the maximum degree we're able to. As far as I can see we don't have firm entrenched points of view on any of the controversial issues; the key principle we believe in (well, certainly for me) is to involve, engage and empower ME/CFS patients and their carers and supporters, and to listen to their views and represent those views to others to the best of our ability, so we'll do that anyway. If that weren't the case, I wouldn't want to be here.

Also please tell us what you have discussed so far and how you're planning to find an advocate.
Sure. Those two questions are pretty much the same question actually! :D

I should first clarify that Gary's away at the moment, and I haven't heard back from him on this subject yet, but I expect to. So I've discussed this with Jonathan, and also with Kina, and with a couple of US advocates (I would name them if anyone's interested, but I haven't yet asked for their permission to do so).

Firstly we've been identifying several questions we need [the CDC] to answer: does the rep have to be a US citizen, do they have to be a medical professional, what potential do we have to involve the forum community directly in the workgroup discussions? I'll be contacting Dr Unger shortly (and/or to the contractor running this) to answer these questions.

Secondly we've been thinking about how we might find our representative. Mainly that seems to boil down to (1) this thread and other forum threads, asking the forum community to help us out here, and asking any forum member who's interested in doing this to contact me, and (2) the other US organizations are talking with each other about these same questions, so there's a good chance that there will be a good advocate or professional who we want to be involved but who doesn't have a seat at the table through an organization or through some other route, and if there is, we're in the loop to be informed of that. Basically, if we do find someone from the forum membership who wants to do this, great; otherwise, hopefully there will be somebody out there who we all know well who can take up the seat as our representative. (Of course, we will still want them to liaise via the forums as I've described above).

Finally, we've been pondering whether it's OK to post this letter publicly. I didn't get round to asking CDC this question directly before the holidays began, but everyone I've asked is of the opinion that, since we weren't asked to keep any of this confidential, it's fine to post the documents I've posted above...so with time being so short, I've gone ahead and done so today.

I hope those are all satisfactory answers, but please do follow up further if there's anything else you'd like to know...and if you have any ideas, please either post them here or contact me directly via Conversation. Of course, nominating someone is one thing, but it would be even better if you could contact them to ask if they'd be willing and able to do this...:)
 

Kati

Patient in training
Messages
5,497
Sounds good, Mark, thank you for sharing all of this.

If I may comment on nominating that person.
-It would be preferable that one person remains involved throughout, for continuity and consistency. Therefore, someone with a consistent level of health needs to be considered. The person needs to be able to attend all of the meetings (the whole duration)
-regardless of country of origin, the person is well versed in health policy and history of illness. The person is also able to speak up (as opposed to be a fly on the wall). What happens at the CDC is of importance for other countries. For instance, canadian policies is looking up to the CDC, and since nothing has come out from the CDC, nothing is happening up here.
-i am hoping that openness and sharing of process is a value that PR forums wants to promote. I hope that the person chosen will share as much as possible.

Exciting times. Here's hoping.
 

Aurator

Senior Member
Messages
625
I think given the timescale involved here, Mark, you and the board/moderators probably need to get a shortlist of candidates you think would be likely to do a good job of this and ask them privately whether they would feel capable of taking on the role. You could ask them to write a short statement outlining why they think they are suited to the task and what their priorities will be in carrying it out - something like that, anyway.

It does sound as if the candidate will need to be someone resident in the U.S.
 

SOC

Senior Member
Messages
7,849
I see value in this representative being a patient, or perhaps a caregiver who lives with this illness on a daily basis. Even our most experienced clinicians can't really understand what we're dealing with on the most fundamental human level and I think that is a part of the process that has always been missing. In saying this, I am assuming that the CDC is intending to recruit expert clinicians independent of patient groups so that there is a solid medical basis behind these educational materials.

I think it's important that PR's representative not have a pet theory about the illness. That all too often clouds a person's thinking and might influence how they represent (or not) the entire PR population.

Our representative should be knowledgeable about the history of the illness, especially in the US since we're dealing with the CDC and how the illness has been represented in the US so far. S/he should also have a general understanding of the main biomedical hypotheses about the illness and the current treatment protocols used in the US, and the current trends in research worldwide.

I realize this sounds like a lot, but I believe quite a few of our members would fit all these criteria, although they might be too self-deprecating to agree to that statement. :)
 

Denise

Senior Member
Messages
1,095
FWIW - I understand that several orgs/other have also been invited to participate in this workgroup.
 

Mary

Moderator Resource
Messages
17,291
Location
Southern California
Also FWIW - In July of 2014 I had an e-mail exchange with Elizabeth Unger about her proposal to omit PEM as a required part of the diagnosis of CFS/ME. This was very concerning to me. Her position was that it would be too difficult for doctors to diagnosis CFS/ME if they had to include PEM in their diagnosis. I'm sure (actually I hope) Dr. Unger's position has changed since then in light of the IOM report and the NIH announcement, but, in any event, here's what she said in July of 2014. I don't know what if any impact this may have on the project outlined in this thread. It's a little tricky what she said - that PEM should part of the definition of CFS/ME, but not a required part of the diagnosis:

I agree that PEM is a characteristic feature of CFS that should be retained as part of the case definition. Difficulties in measuring or determining the presence of PEM do not detract from its importance. I will try to clarify the comments I made at the recent CFSAC meeting.

Clinicians need to recognize the importance of asking their patients about their responses to physical and cognitive stress, i.e. eliciting a history of PEM, because of the impact of PEM on disease management. When patients and their families and friends understand the importance of activity management, they can work together to minimize or avoid PEM. Emphasizing PEM in this way, to improve care of CFS patients, can be done without making PEM a requirement for diagnosing CFS.

The concern I raised was about requiring PEM before a diagnosis could be made. Lack of a systematic way to evaluate PEM may introduce additional barriers to recognition of CFS and delivery of appropriate health care. As PEM has not been widely investigated in other illnesses, it is difficult to be certain that this feature is unique to CFS. As you note, the 2-day exercise test, which has shown promise in research settings, would be difficult to apply in routine clinical practice. Requiring all potential CFS patients to undergo such an expensive and difficult task would not be in the best interest of assuring compassionate and high-quality care from the medical community at large. CDC places improved care for CFS patients as one of its top goals. We want to empower health care providers to feel comfortable with how they diagnose and manage CFS patients.
 

ghosalb

Senior Member
Messages
136
Location
upstate NY
I do not know if he is willing to, but one member named Dr. Patient will be a great candidate. I believe he is a family doctor and a homebound (assuming low activity level) CFS patient. He will be able to articulate CFS issues for really sick patients better than most.
 

SOC

Senior Member
Messages
7,849
I'll add that our representative should have no pet dismissals, either. Someone who outright rejects one or more of the major medical hypotheses would not represent us well, any more than someone who pushes his/her pet hypothesis. We need someone willing to consider and discuss fairly and objectively any and all biomedical hypotheses. At this point we don't know which way things are going to go and we don't want our representative to be the one quashing a reasonable hypothesis at this stage.

To be clear, biopsychosocial hypotheses about the illness are not biomedical hypotheses. At best they are psychological hypotheses or philosophical constructs. We do not need a representative who supports non-medical hypotheses for this project, imo.
 

caledonia

Senior Member
Also FWIW - In July of 2014 I had an e-mail exchange with Elizabeth Unger about her proposal to omit PEM as a required part of the diagnosis of CFS/ME. This was very concerning to me. Her position was that it would be too difficult for doctors to diagnosis CFS/ME if they had to include PEM in their diagnosis. I'm sure (actually I hope) Dr. Unger's position has changed since then in light of the IOM report and the NIH announcement, but, in any event, here's what she said in July of 2014. I don't know what if any impact this may have on the project outlined in this thread. It's a little tricky what she said - that PEM should part of the definition of CFS/ME, but not a required part of the diagnosis:

So basically she is in favor of the Fukuda criteria (i.e. the status quo). It will be interesting to see if she if she has changed this position post-IOM.

Instead of complaining that there are no simple measures for PEM in a doctors office, therefore we'll just throw out PEM as diagnostic, they ought to develop something.
 

leela

Senior Member
Messages
3,290
I don't know what Dr. Lily Chu is up to lately, or if she'd be interested, but she has always struck me as someone who is smart, fearless, and a dedicated ally.
I'll never forget her taking no BS at a particularly sticky CFSAC meeting.
 

Kati

Patient in training
Messages
5,497
I don't know what Dr. Lily Chu is up to lately, or if she'd be interested, but she has always struck me as someone who is smart, fearless, and a dedicated ally.
I'll never forget her taking no BS at a particularly sticky CFSAC meeting.
Personally, i'd prefer someone who enpgages here on PR forums on a regular basis. A patient or caregiver, not necessarily a physician. There will be other representatives from the scientific community at the table. This is a chance for patients to be represented.

(I am sure the voice of Dr Chu is a good one too)
 

Nielk

Senior Member
Messages
6,970
I see value in this representative being a patient, or perhaps a caregiver who lives with this illness on a daily basis. Even our most experienced clinicians can't really understand what we're dealing with on the most fundamental human level and I think that is a part of the process that has always been missing. In saying this, I am assuming that the CDC is intending to recruit expert clinicians independent of patient groups so that there is a solid medical basis behind these educational materials.

I think it's important that PR's representative not have a pet theory about the illness. That all too often clouds a person's thinking and might influence how they represent (or not) the entire PR population.

Our representative should be knowledgeable about the history of the illness, especially in the US since we're dealing with the CDC and how the illness has been represented in the US so far. S/he should also have a general understanding of the main biomedical hypotheses about the illness and the current treatment protocols used in the US, and the current trends in research worldwide.

I realize this sounds like a lot, but I believe quite a few of our members would fit all these criteria, although they might be too self-deprecating to agree to that statement. :)

What do you mean by a representative that has no pet theory about the illness? Any one who has been a patient for a while and has followed the politics of the CDC, has some theory of what they think should happen at the CDC. Furthermore, it will be really impossible to satisfy all members here since there is a collection of members with different theories of what the disease actually is. This is due to the fact that there are so many criteria out there. Will PR pick someone to represent the neuroimmune disease ME and insist for the criteria to be CCC or ICC? Or do you believe that someone who will push for the IOM criteria is one that has no pet theory? Do be an advocate, one has to take a side and have a basis on what they are representing and pushing for. I don't think that one can be neutral and be a successful advocate.

As a long time member here, I am not comfortable to be represented by someone who will push for the IOM criteria, whether for diagnostic or research purposes - nor for educational purposes.
 
Messages
13,774
I don't think that the ICC or IOM criteria are ideal.

I think that a 'pet theory' would be going beyond the evidence in thinking that one particular thing is 'the answer' and we just need to get others to accept that. At the moment there is a lot of uncertainty, and that needs to be acknowledged.