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.
 
Colleen Steckel said:
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.
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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.
 
Colleen Steckel said:
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.
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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.
 
Colleen Steckel said:
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.
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CBT and GET don't appear to have a meaningful effect for the vast majority of patients even when broad criteria are used.
 
Skycloud said:
I haven't followed all the detail of the discussion of content above, and what may have been altered (?). I haven't the energy to clarify if/how it's been changed and I'm not comfortable if a petition letter might be changed after people have signed it. The petition letter as I've quoted is 'ok enough' for me and I'll sign later in the week if that's still the case.
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The petition letter has been changed since I made my comment about item #6. Yes, it's not ideal that it changes after some people have signed it. But I think the changes are a big improvement and I have signed the petition.
 
Hutan said:
The petition letter has been changed since I made my comment about item #6. Yes, it's not ideal that it changes after some people have signed it. But I think the changes are a big improvement and I have signed the petition.
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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’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?
 
I guess the most ethical thing to do if you realise you've made a major error on a petition that people have already signed is to close it with an explanation and apology, and start again with a new one.

Alternatively leave it as it is, point out the concern about it, and leave people to decide whether to sign it anyway with the error present.

I agree is doesn't seem ethical to materially change a petition after people have signed. That would particularly apply if you added something new to the petition. You are effectively 'stealing' their signatures for a new petition they have not agreed to.

I haven't followed this thread, but I understand the change in this case was the removal of one item from a list of demands. In that case I guess you could say everyone who signed it had seen and signed up for the remaining demands, so it's not so bad.
 
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:
Thank you for signing this petition to the CDC: https://my.meaction.net/petitions/d...ty-consultation-on-new-me-guidelines-from-cdc

We wanted to let you know that a draft copy of the petition was inadvertently published on Monday, August 27th. Midday (PST), we replaced it with the final version. If you signed before 2pm PST on Monday, you may be one of the few hundred who signed the draft version, which differed in one 'ask'.

You should have automatically received an email notifying you of the change. Unfortunately, our system failed to send. Though there are no alterations in the spirit of the petition, we encourage you to read through the updated version to ensure you remain comfortable with signing.

If for any reason you would like to withdraw your name from the petition, email brianne@meaction.net.

We sincerely apologize for the error! We thank you for your patience and understanding.

Sincerely,

The #MEAction Team
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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.
 
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