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

Messages
5,238
Location
Sofa, UK
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.
I'm not entirely sure what you mean by 'token of respect' Leela, but the primary aim of the thread is to identify suitable candidates and keep the forum community in the loop as far as we possibly can. In reality the board is going to have to make the choice, I expect - if there is a choice to be made. But we genuinely do want to enlist the help of the community in identifying one or more people who are willing and able to do this job.

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.
I'm really not so sure about that Leela. All the signs are that things are changing significantly in the US, and even though there are very likely people at the CDC who did not want to open the doors to representatives of patient organizations, I think it's also likely that whoever has decided that patient consultation is essential is also going to be keen to ensure that consultation is genuine. I do expect that the workgroup will produce something which is a significant improvement on what has gone before, even if it doesn't go as far as we'd like. We just can't know how much has changed and how serious this consultation is going to be, but ideas about the CDC based on past performance don't seem terribly relevant to me: organizations can and do change their emphasis, and the bottom line is that we have been offered a seat and it seems important to me to take up that opportunity and give the process a chance.
 
Messages
5,238
Location
Sofa, UK
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.
Absolutely: that's one of the biggest open questions in my mind about the process. I'm writing to the CDC and the contractor organizing this, to find out more about how transparent the process will be and how much public feedback is going to be possible.
 

SOC

Senior Member
Messages
7,849
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 tried to be clear in saying major medical hypotheses, that I don't think our rep needs to be supportive of every fringe hypothesis. Someone who, for example, rejects any notion of autoimmunity, pathogens, or immune dysfunction playing a part in the illness would not represent the membership well. There are a number of hypotheses about what is going wrong in the illness that are fairly widespread and should not be dismissed out of hand.

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.
I didn't say anything about causation. We know too little about causation to take any stand on the matter and it's irrelevant to the topic at hand, imo. I thought that was understood. I was referring to medical hypotheses about factors that play into the pathology and symptomology of the illness. That is very relevant to diagnosis, management, and treatment. A rep who rejects endocrine abnormalities, dysautonomia, immune dysfunction, mitochondrial dysfunction etc might not support the management and treatment patients need. That doesn't mean the rep has to agree with all those hypotheses personally, just that s/he should not reject them being addressed simply because s/he does not believe they are important. Our rep needs to represent us all, not just his/her personal viewpoint.

We have no cure today. The CDC is not going to be writing guidance for curing the illness. Right now we need the CDC to provide guidelines for comprehensive treatment to relieve some of our symptoms to improve our quality of life while we are waiting for The One Treatment That Rules Them All. That means taking a good hard look at all the abnormalities, symptoms, and potential treatments for them regardless of whether they are a "cure" the illness itself. We want treatment that gives us better quality of life and we want it now.
 

medfeb

Senior Member
Messages
491
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.

That's a reasonable assumption but I think we need to confirm it given Dr. Unger's past position on PEM and CDC's failure to date to commit to not using findings and recommendations from Oxford and Empirical studies. CDC is issuing standardized patient videos for medical schools through MedEd Portal that were developed against Fukuda a few years ago and my understanding is that PEM is only discussed in supplemental materials. If true, not good
 

caledonia

Senior Member
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.

In reply to my own statement, I was just looking at interviews from Unger regarding the CDC Multisite and it looks like they may be able to develop questionnaires that will pick up PEM. However, that's probably still at least a year off. They should be able to continue a 5th year of research, since they got their funding reinstated.

The Multisite will probably wrapping up around the same time this Workgroup does.
 
Messages
5,238
Location
Sofa, UK
I'm afraid I don't have time to reply to all the above just now, but to quickly give an update on progress...

We have one volunteer to take up the position: a forum member who is a caregiver to a child mostly homebound with ME/CFS. This person has research and clinical experience, and relevant experience delivering educational materials to clinicians. In order to protect the anonymity of their child, this member, if appointed as our representative, would post here using a separate account in her own name.

I have also heard back from the contacts who were offering to pair up experienced advocates lacking a seat with organizations lacking a representative, and it appears that all those people have now found a seat on the workgroup, so at present this volunteer - who seems eminently suitable to me - is our only known option.

If anybody else would like to be considered for the role, please do contact me. A few names have been mentioned on this thread, but none of them has contacted me to say they are willing and able to do the job. We only have a couple of days left, so if you'd like to do this, now's the time to speak up...
 

leela

Senior Member
Messages
3,290
@ Mark, have you asked Leonard Jason, Jen Brea, Ron Davis, Viggster, Searcher, Julie Rehmeyer, or Mary Dimmock if they are interested?