CDC patient toolkit

M

Milo

Senior Member (Voting Rights)
So this came up on my google alert, a CDC toolkit for patients to prepare themselves before, during and after a doctor visit. It leaves me with several questions:

1) Is that all that they’ve got?
2) Really, CDC, really?
3) it could have applied on diabetes patient or any other disease. Nothing we do not know. (Ok i know, it’s not a question)
4) what on earth is CDC doing? Controlling diseases?
5) What happened to the study you started 5 years ago?


https://www.cdc.gov/me-cfs/resources/patient-toolkit.html
 
I understand the need to make this info accessible to all, but how about answering ME specific problems, related to doctors visits, such as what to say when your dr wants to send you for CBT and GET?
This is beyond dumbing down, it is simply providing content that is meaningless to a majority of patients who can’t even access competent care.
 
So it would be useful to have an additional document about treatment - what should not be recommended - increasing activity beyond what you can do without crashing, and psychological therapy if you don't have a psychological problem, and what should be recommended - pacing and treatments for symptoms. And that there is no cure, so to avoid doctors who claim they can cure ME.
 
Trish said:
So it would be useful to have an additional document about treatment - what should not be recommended - increasing activity beyond what you can do without crashing, and psychological therapy if you don't have a psychological problem, and what should be recommended - pacing and treatments for symptoms. And that there is no cure, so to avoid doctors who claim they can cure ME.
Click to expand...

The document on treatment is likely to take a while since CDC hasn't finished its review of the treatment evidence review they contracted for. (It is due out at any time for public comment.)
 
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