Sign on to #MEAction’s response to flawed CDC review, deadline 15th Aug 2021

[Trish]

Maybe it's just a routine thing with the CDC that every x years each evidence review is updated, and if there's a change in evidence then the guidelines are updated too.

That's a wild guess.

 

[Barry]

I haven' t read all of the ME Action response yet, but the above gives an idea of its content. I've signed to support the response (which people should be aware is still evolving as they get feedback). I think it's important that the CDC gets a clear message. Given the previous gains in the US, that this CDC review could get it so wrong is, well, remarkable.

I also have signed to show support. To me the key point, as always, is that CBT/GET trials for ME/CFS, by design, very likely misconstrue harms from treatment as lack of perseverance by the patient; inevitable if you presume a physical illness to be a mental one. These trials are explicitly designed to not recognise harms for what they are, deteriorations in symptoms due to treatment. Only the most severe and immediate harms are going to get reported, and the majority of GET-related harms don't meet these trials' criteria for counting as harms. Maybe these treatments do help a minority of people with an ME/CFS diagnosis, but if nobody is recognising, acknowledging, or giving a damn about genuine harms from these treatments, then that really p*sses me off.

 

[Yessica]

The situation has gone backwards before there.

This has been a big concern of mine that this will happen.

I remember, I think it was about 15 years ago when pages of the then called CFS CDC guidlines became good (with I think one exception, or maybe a couple, in what was said). It was very exciting to me to read it. It described what it was for me clearly and I could share it with doctors and people and then within a very short period of time it went backwards again.

Much to my horror. Certain people I recommended it to saw the new version and not the previous one.

I do understand that there is no unified consistent response, but still. Just comes across as either rank incompetence, meaningless bureaucracy with potentially unintended consequences, or someone involved trying to muddy the waters - or a combination of all three.

Been wondering about this too.

Maybe it's just a routine thing with the CDC that every x years each evidence review is updated, and if there's a change in evidence then the guidelines are updated too.

That's a wild guess.

It doesn't make sense to me that they're doing this. Especially when things that have needed updated on there take forever to have it happen, if it even happens with a few things (some still haven't been clarified even though they've been brought up over the years by advocates to the CDC that it needs changed ). This is scary to me.

And don't understand why with GET and CBT again.

Edit: Edit added, then moved below. And extra words added here.

 

[Yessica]

Ariel said: ↑
The situation has gone backwards before there.

This has been a big concern of mine that this will happen.

I remember, I think it was about 15 years ago when pages of the then called CFS CDC guidlines became good (with I think one exception in what was said). It was very exciting to me to read it. It described what it was for me clearly and I could share it with doctors and people and then within a very short period of time it went backwards again.

Much to my horror. Certain people I recommended it to saw the new version and not the previous one.

Oh just remembered this was during the time when the then director of the CDC was dedicated to moving CFS forward/helping us, and they were doing a big public education campaign here. So it was very shocking to have the guidelines they changed for the better during that moment, to have them go backwards again and so soon.

 

[Hutan]

Just bumping this. Does anyone have any idea how many people have signed up to the response?

 

[Willow]

I've just checked the petition and saw that at this moment it has 6,779 who have signed it. I believe MEAction were aiming for 7,000 signatures. The number continues to slowly increase. I do hope as many as possible do sign on.

 

[Wilhelmina Jenkins]

To be clear, CDC is not planning to use this report. Dr Unger at CDC has said publicly that it’s useless. The point when this review started years ago was to add some good treatment recommendations to CDC’s information about ME/CFS. The expectation was that good, peer reviewed studies would have taken place before this review came out. As we all know, this didn’t happen and CDC has a useless study on its hands.

If the study is not published and is just dumped into the trash bin, no problem! They can wait to issue guidelines after some decent work is done. The problem will be if either the group that conducted the review or CDC itself decides to publish these results in a journal read by physicians. (Researchers want their work published, even flawed work!) A well meaning physician could read it and think that CBT and GET were the best possible treatments for their ME/CFS patients. That’s what the petition is trying to stop.

There is no danger that CDC is taking a backwards step in its recommendations, but allowing this very poor study to be published would be a terrible mistake.

All of this could have been avoided if CDC had directed the reviewers to only consider studies in which the patients were experiencing PEM. But here we are.

 

[Yessica]

Thank you @Wilhelmina Jenkins.

 

[Willow]

Just checked and saw that as of this moment 7189 people added their names to MEAction's response to the CDC opposing their flawed evidence review. August 15 was the deadline to do so. This may not be the final tally. Thanks to all those who helped with this advocacy effort.

 

[Sly Saint]

Over 7K Sign #MEAction’s Response to Flawed CDC Review

We did it! #MEAction has officially submitted our public comment on the CDC’s flawed review of ME/CFS treatments.

We received 7,209 co-signs from across the ME community supporting our call for the CDC to stop this flawed evidence review from being published. By working together, you helped us send a strong message that GET & CBT are not safe or effective treatments for people with ME.

Now it is the CDC’s move. Will they listen to the ME community when we say we deserve better than a flawed, poorly scoped, and executed research review that continues to repeat the mistakes of the past and puts people with ME at risk of harm? The federal public comment process means that the agency is required to provide a response to our public comment and can’t simply ignore our criticism.

What action will the CDC take in the face of such criticism and opposition from the ME community? Can the CDC acknowledge and learn from their mistakes, turning a new page to begin a real partnership with our community? Or will they dig in their heels, ignore the harm of their actions, and destroy our ability to trust the CDC to do the research and education we so desperately need?

Well, CDC that is entirely up to you. Rest assured, we will hold you accountable.

Thank you to everyone who contributed to a truly massive effort over the past several months.

https://www.meaction.net/2021/08/16/over-7k-sign-meactions-response-to-flawed-cdc-review

 

[Sly Saint]

from email

CDC decides not to publish flawed ME/CFS treatments review!
As we enter the holidays we have a positive development to report coming out of yesterday’s ME/CFS stakeholder call with the U.S. Centers for Disease Control and Prevention (CDC). CDC has announced that it will not publish a systematic evidence review of ME/CFS treatments by the Oregon Health Science University Evidence-based Practice Center (EPC) in an academic journal. #MEAction supports this appropriate decision by CDC.

#MEAction had raised multiple concerns with the draft EPC review, and over seven thousand people across the ME community co-signed our public comment, which stated that the EPC review was fundamentally flawed and strongly recommended that it not be published.

CDC Chronic Viral Diseases Branch Chief Dr. Elizabeth Unger also stated in her program updates that “In the interest of transparency, we will be posting the final report, comments and responses on our ME/CFS website.”

During the call, #MEAction advocates asked Dr. Unger for CDC to hold a community meeting to dialogue about how the EPC review information could be shared on the website in an appropriate context to ensure there is no confusion for healthcare providers or harm to patients. Dr. Unger replied that CDC would consider that request.

#MEAction has written a follow-up letter to Dr. Unger underscoring the importance of holding a public community meeting. If the CDC ME/CFS program is unable to organize a meeting themselves, #MEAction will organize a community meeting and invite CDC representatives to participate as panelists.

Read Letter
We will update the community on this important issue and communicate news as it becomes available. Thank you for your continued support of #MEAction’s federal agency advocacy efforts. Progress would not happen without you.

The post CDC decides not to publish flawed ME/CFS treatments review! appeared first on #MEAction Network.