• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

ME Action: CDC taking comments on Draft Treatments only there are none

Rufous McKinney

Senior Member
Messages
13,251
This news release from earlier today points out we have an opportunity to comment on draft CDC treatment protocols.

https://www.meaction.net/2021/06/04...-comment/?mc_cid=264c13b51d&mc_eid=1af7ea8b95

warning- reading may increase blood pressure.....

So its not surprising that actual treatments are lacking, therefore the draft guidelines may not be very useful.

Cheery Excerpt:

"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.”

GETS and PACE baggage- see discussion at the link above.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
Maybe #MEAction needs to investigate what benefits people get from promoting Pace and Get. It might only be one bureaucrat getting a promotion from a 'positive' report, but that's all it takes.
 

Rufous McKinney

Senior Member
Messages
13,251
Maybe #MEAction needs to investigate what benefits people get from promoting Pace and Get. It might only be one bureaucrat getting a promotion from a 'positive' report, but that's all it takes.

Snarky remark- I've tried to find a therapist on more than one occasion. I failed on every one of those occasions.

If CBT was in fact an effective treatment for ME, how might one obtain any?
 

Rufous McKinney

Senior Member
Messages
13,251
Oh, is there more to CBT than just thinking 'happy thoughts'? :rolleyes:

the rubber band trick.....You have a negative thought, you snap the rubber band your wearing on your wrist, bad bad self.

so: the thought well I'll be too tired if I do all THAT...snap that rubber band.