Petition: Stop CDC from hiring shoddy contractor for ME treatment guidelines

Asking for proper treatments that have evidence based studies always leads to what disease are we talking about? If it is CFS that is diagnosed with Fukuda with patients who DON'T have PEM (or PENE), then we are still looking at CBT and GET as viable treatments.

If we are looking at ME patients who have immune dysfunction then a report that doesn't take into account any of the immune system issues because the IOM criteria was used leaves all of that vital information out of the report.

A clear designation of patient populations is required in order to get a document that actually guides doctors to do more than behavior modification for those who have ME with the immune system dysfunction widely recognized as a key component as per the ICC.

 

We are looking at the claim, not at objective evidence, even for CFS rather than ME. For ME GET is clearly contraindicated by hard physiological evidence. For CFS its more a complete absence of objective evidence for CBT or GET. Subjective, unblinded findings that are within an expected bias range are not good evidence.

 

This is the core of all EBM approaches in an area that is a research wasteland, its not specific to the IOM but the entire methodology. It could not have been any other way using an evidence based approach.

 

CBT and GET don't appear to have a meaningful effect for the vast majority of patients even when broad criteria are used.

 

I was unaware that they changed something after it was signed. That makes me very uncomfortable. Does anyone have a "before and after" version to show what was changed??

I don't see an item #6.

 

I think that they removed it. It might not be ideal, but removing a sub-clause of the petition some had raised concerns about is much, much better than adding something to it imo.

 

7529 signatures so far. Today is the deadline (I think).

https://my.meaction.net/petitions/d...-from-cdc?bucket=&source=twitter-share-button

 

I’m really quite astonished that there isn’t more concerned discussion about a high profile (or any) organisation changing a petition after thousands have signed it. If it was on a subject we didn’t agree with, I’m sure we’d all be up in arms. It’s highly unethical to gain thousands of signatures and then change what has been signed. In effect it makes the signatures invalid. And not to answer questions (on Twitter) about it either. It makes me, for one, not trust any of MEAction’s petitions in the future - how would I know they wouldn’t be changed too?

 

It's a pretty unusual situation with only a few days available to run a petition. That makes starting over much more costly. Seems like they were in a difficult situation.

It's not ideal, and I agree that in principle it's worrying, but in terms of the specifics of this one change I don't feel concerned about it.

 

E-Mail from #MEAction:

 

When did you get this? I’ve not received one.

 

15:53 today (UK) according to hotmail. I was about the 250th signer, maybe they only sent them out to people who signed before it was changed?

 

Yes, I imagine it’ll take the system a while. Thanks.

 

People who signed the correct version will not get a notice.

Just to be certain, we sent it to everyone who signed anytime on Monday -- just in case they kept their browser window open awhile before signing.

 

You signed on Tuesday, Allison, so you signed the same version that's there now.

 

Petition can still be signed: Right now 7,989 of 8,000 signatures

 

We broke over 8,000!

Please continue sharing, and if you can, make it a project to get a friend to sign.