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

[helen1]

@Mark I'm a little concerned about the slow pace of this rep choosing process with the Jan 4 deadline looming. I like how people are reflecting on what we need in our rep and I agree with what people are saying. But how are we to go from there to nominations and choice making? Especially if not by voting if you feel that's not feasible...

Do the mods have a process brewing? Should we not at least be asking the members we have in mind if they're willing and able?

 

[Esther12]

Any volunteers?

 

[leela]

I suspect this thread and announcement was more of a token of respect to the community while the organizing body of PR choose someone.
I appreciate how utterly challenging it would be to have a democratic process, even if there were not such a tight time constraint.

Personally, my faith in Dr. Unger and the interests of government bodies remains thin and circumspect, so who is chosen just doesn't seem like that big a deal to me;
though it would be nice to have someone great, who also has the energy and availability for follow-through, because it will be necessary to be a bulldog.

Similarly I suspect inviting PR to have a seat at the table is a symbolic gesture at best--much like CFSAC and its (eroding) tolerance for patient testimonies which for all their harrowing poignancy had the effectiveness of a spitball.

Sorry, I'm cranky today.

 

[dancingstarheart]

I was wondering how transparent this CDC workgroup process will be. Is the only public meeting going to be at the completion of the working group? Will the representative for Phx R be able to take information from the working group and get feedback from the forum? Since this is such a long process. It could be... if there are several differing views, that all of those views are communicated to the working group. Maybe there will be agreement on not allowing references to PACE Trials and the recommended CBT/GET, that can be communicated.

 

[dancingstarheart]

Here is an interesting blog that might give perspective on the CDC workgroup process. Or at least something to think about, and how we can think of solutions.
http://thekafkapandemic.blogspot.com/2015/12/bureaucratic-theater.html?m=1

 

[leela]

Yeah, @dancingstarheart , if Samuel weren't so horribly ill, I'd totally want him as our rep.

 

[dancingstarheart]

@leela Oh, I do not know Samuel personally. Just saw this blog posted the other day and thought it very riveting. Sorry to hear he is doing so bad.

 

[Mark]

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.

Good points Kati, you're right that these seem to be the essential requirements. It's quite hard to find a patient who can make this kind of commitment of course...

-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.

That's very much the case, we do want to be as open as we can be. Sometimes it's not possible or appropriate to share everything from discussions that go on behind the scenes (for example, when there are press embargoes on announcements that are being prepared) but wherever we can be, we do try to share info. I'll be querying with the CDC as to how open we will be able to be about this project.

 

[Mark]

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.

It's an extremely short list, so far. I don't expect we'll even have time for statements and lists of priorities...if we have more than one candidate who's prepared to do it, I'll be delighted...

 

[Mark]

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.

From the discussions I've had, I agree: I think a patient representative would be ideal. Initially I suspected that it would need to be a medical professional but I've been reassured that's probably not a requirement. Of course if we could find someone who's both a patient and a medical professional that would be even better...there seem to be quite a few of those...

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.

I agree, that's an important requirement.

 

[Mark]

FWIW - I understand that several orgs/other have also been invited to participate in this workgroup.

That's correct Denise. I don't know which other orgs have been invited to send a representative but we're certainly not the only one.

 

[Mark]

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:

The brief is to prepare educational materials in light of the IOM report, so I would expect that some kind of explanation of PEM (or 'exertion intolerance') would have to be a key part of those materials.

 

[Mark]

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.

Thanks for the suggestion ghosalb. I don't think it would be helpful for me to comment on the suitability of candidates that have been suggested, at this stage, but I'll explore all the options suggested here.

 

[Mark]

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.

I can't see us choosing a representative who supports non-medical hypotheses for ME/CFS, to be honest. Depending on what you mean by 'major medical hypotheses', I probably agree with you that we wouldn't want our rep to be someone who rejects some of them, but with the caveat that there are some implausible ideas out there and some that have no real scientific basis, so I wouldn't have a problem with someone who takes a critical view of some of those ideas. I'm not sure that the medical hypotheses as to causation and aetiology are particularly central here though; I expect the guidelines will be more about definition, diagnosis, management and treatment options, and that there will need to be good evidence to support anything that's said, so I think it's more important that representatives have a good understanding of the symptoms of ME/CFS and their ideas about causation are probably going to be less important.

 

[Mark]

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.

Thanks for the suggestion Leela. I am probably going to struggle to find the time to track down and contact everyone who's suggested, so if you (or anyone else) would like to contact Lily to see whether she'd be interested and whether she has a seat through some other means, that could be very helpful.

 

[Mark]

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 agree that would certainly be ideal.

 

[Mark]

I nominate SUSHI...very knowledgeable; has tried lots of different treatments, has experience with feeling very poorly and then seeing some improvement; is diplomatic and well respected on the forum.

Thanks for the suggestion Navid. I don't know whether Sushi has the time available to do this, but it would certainly be great if someone who's already involved with PR as a volunteer could do the job.

 

[Mark]

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.

The brief from the CDC is to develop educational materials informed by the IOM report, so I suspect it's pretty much a foregone conclusion that the criteria in those materials will be largely based on the IOM's criteria. I don't think it should be impossible, though, for the materials to make reference to the CCC and ICC and to describe some of the controversies over ME and CFS and the definitions. I would personally doubt that it would be effective to send a representative who is strongly opposed to the IOM's proposals about criteria, because such a person would essentially be opposed to the core brief of the workgroup and would likely just disrupt the group's deliberations. But I think that most of us in the community are very positive about CCC and ICC (as witnessed by the number of individuals and orgs who signed the letters promoting CCC and ICC before the IOM exercise), so I hope that will be reflected in the educational materials that are produced in the end.

You're right that it would be impossible for someone to satisfy all points of view, but I would hope that a representative, with a brief to involve the community here in discussions as far as possible, would be able to take all points of view into account.

 

[BurnA]

The brief is to prepare educational materials in light of the IOM report, so I would expect that some kind of explanation of PEM (or 'exertion intolerance') would have to be a key part of those materials.

If it's in light of the IOM report, then whatever they produce from this will be based on the IOM report by the sounds of it. I say this only because of talk about pet theorys .... So, by the sounds of it, someone who is familiar with and open to the IOM report would be a starting point.

 

[Mark]

@Mark I'm a little concerned about the slow pace of this rep choosing process with the Jan 4 deadline looming. I like how people are reflecting on what we need in our rep and I agree with what people are saying. But how are we to go from there to nominations and choice making? Especially if not by voting if you feel that's not feasible...

Do the mods have a process brewing? Should we not at least be asking the members we have in mind if they're willing and able?

I'm very concerned about the tight deadline too, Helen. You're right that reflections on what an ideal candidate might look like are rather academic, and what we need is to find someone who's willing and able to do the job. As I noted above, in practice there is not going to be time to have a vote or anything like that. I will be happy if we get at least one person who we can send who is able to do the job; if we identify more than one, then we might have to make a choice. In practice I think it's pretty much unavoidable that the choice will have to be made by the PR board; anything else just isn't feasible. We'll just have to see what names (if any) are on the table by Jan 3, and take it from there...