For those of you who understand the history of Me/Cfs and reasoning behind Cdc's push for cbt and get

[Davsey27]

Its still early but i was curious if anyone of you may have any creative ideas in organizing/preparing for a protest or other strategies if CDC goes through with the new CBT and GET guidelines?

Someone on a support call in Canada mentioned to me first it may be helpful to know what triggered the 2014 systematic review and find out who is in who's pocket.I reached out to Lenny Jason who may be interested in helping but I am probably going to need some creative ideas besides seeing if perhaps a professional like him or someone else may go on mainstream media

I realize organizations like meaction,meinternational and solveme have written rebuttals and patients posted on the Cdc's page in thekr comments section.

Looking for some more creative ideas that may add on to these efforts.I know one person on a fb group mentioned getting mainstream media involved.

What about perhaps prepping for a peaceful protest at either the Cdc's building or their contractors Pacific Northwest in Oregon.I wonder if either of these may be useful.Again, I realize let Cdc make there decision first but I figured perhaps it may be useful to have a plan b in place.

Thank You

 

[wabi-sabi]

One thing I can think of is fixing the ICD-10 coding around ME/CFS. The MN ME/CFS Alliance has a thing on their facebook page about this currently and I think some other orgs do as well.

Here's my rationale-ME/CFS seems to be unique among diseases in causing PEM, while many illness cause fatigue, even severe fatigue like cancer or MS. CDC acknowledges PEM in the diagnostic criteria, for ME/CFS, but stops there. PEM is one of the major issues of why GET can't possibly be beneficial. When we lump together data with patients who do and don't get PEM, the clarity of the harms of GET get muddled.

Clarifying the ICD-10 coding is how we get to the beaurocratic nuts and bolts of diagnosis and data tracking, so it's a good lever to push. It's playing the long game, but it needs to be done.

 

[Pyrrhus]

Its still early but i was curious if anyone of you may have any creative ideas in organizing/preparing for a protest or other strategies if CDC goes through with the new CBT and GET guidelines?

Actually, the CDC has already sort of caved, saying that they will not use the recommendations in the independent review to develop their own official recommendations. They have gone even further, saying that they have no plans to issue any official treatment recommendations.

Since the US does not have government-run healthcare (except for senior citizens enrolled in Medicare), the CDC is not obligated to issue any recommendations and if they did, doctors would not be obligated to follow them.

So why is it important to stop the draft conclusions of the independent review? Because if the independent review is finalized, it could be published, which would lend credence to GET/CBT in future considerations by a government agency.

One thing I can think of is fixing the ICD-10 coding around ME/CFS. The MN ME/CFS Alliance has a thing on their facebook page about this currently and I think some other orgs do as well.

Related discussion:

#MEAction & 6 ME Orgs Call For CDC To Change How It Tracks ME/CFS
https://forums.phoenixrising.me/thr...for-cdc-to-change-how-it-tracks-me-cfs.85234/

 

[Davsey27]

Actually, the CDC has already sort of caved, saying that they will not use the recommendations in the independent review to develop their own official recommendations. They have gone even further, saying that they have no plans to issue any official treatment recommendations.

Since the US does not have government-run healthcare (except for senior citizens enrolled in Medicare), the CDC is not obligated to issue any recommendations and if they did, doctors would not be obligated to follow them.

So why is it important to stop the draft conclusions of the independent review? Because if the independent review is finalized, it could be published, which would lend credence to GET/CBT in future considerations by a government agency.



Related discussion:

#MEAction & 6 ME Orgs Call For CDC To Change How It Tracks ME/CFS
https://forums.phoenixrising.me/thr...for-cdc-to-change-how-it-tracks-me-cfs.85234/

Are you saying the Cdc has mentioned they won't publish the Pacific Northwest center for evidence CBT and GET study as a new treatment guideline?

Thanks

 

[Pyrrhus]

Are you saying the Cdc has mentioned they won't publish the Pacific Northwest center for evidence CBT and GET study as a new treatment guideline?

Thanks

Here's how MEAction describes the situation:

3. GOOD NEWS: CDC PUTS TREATMENT GUIDELINES ON HOLD
Some people have wondered whether this draft report means that CDC might reimplement CBT and GET as recommendations for ME/CFS treatments, but this systematic evidence review was only an initial step in CDC’s process of developing treatment guidelines. CDC has already announced that they will not pursue developing ME/CFS treatments guidelines at this time. #MEAction wrote to CDC Chronic Viral Disease Branch Chief, Dr. Beth Unger, and she stated:

“…the systematic review provided little new data and the process for guideline development would not be likely to provide an advance over what is currently available from the ME/CFS Clinician Coalition and IACFSME. We will be completing the Systematic Review and will not be proceeding with guideline development until clinical trial data becomes available.”​

4. BAD NEWS: PUBLISHING FLAWED REVIEW WOULD HARM PEOPLE WITH ME
This report can still do harm to the ME community, even if the CDC doesn’t use it to develop its own treatment guidelines. If it is published in a peer-reviewed academic journal, as the 2014 review was, it could still be used by other entities to present an erroneous view of ME and promote the continued use of inappropriate CBT and GET “treatments.” There will be no opportunity for community review of the finalized evidence review, so it will be important that CDC hear from us how strongly we oppose any publication of this flawed report, which cannot be resolved through minor revisions.

Source: https://www.meaction.net/2021/06/04...view-of-me-cfs-treatments-for-public-comment/

 

[wabi-sabi]

Here's a wacko sort of idea- I don't know if it's good or awful and may be a sign that I spend too much time on the computer. How about we get some of the medical youtubers to make content about ME/CFS and the BPS scandal?

 

[wabi-sabi]

Or how about if one of the researchers spoke on ME/CFS at the Royal Institute's public science education talks? Or the Cheltenham Science Festival? We need to do public outreach.

 

[Rufous McKinney]

Since the US does not have government-run healthcare (except for senior citizens enrolled in Medicare), the CDC is not obligated to issue any recommendations and if they did, doctors would not be obligated to follow them

meanwhile the insurers, who have us by in a stranglehold- deny tests and prescriptions, referalls lead to canceled, go away, we can't help you or actual abuse.

they've got all the money. We get no access to much of anything.

 

[Rufous McKinney]

except for senior citizens enrolled in Medicare)

I am on Medicare

there is some book: which contains rules...and to see those rules, which restrict treatments under Medicare, requires you have a subscription to some private very expensive rule book.

So basically-there is a book that says- don't let them be treated.

Don;t let that one have Provigil (denied).

Don't let that one have LDN (denied)