Petition against the empiric criteria (Reeves et al, 2005) used by the CDC now

[Dolphin]

http://www.ipetitions.com/petition/empirical_defn_and_cfs_research/

Following posting another thread,
Collected information on James Jones (now the real head of the CDC's CFS program?)http://www.forums.aboutmecfs.org/sh...-(now-the-real-head-of-the-CDC-s-CFS-program-)
somebody sent me a PM to suggest I a thread on this topic here.

I was a bit disappointed when a message recently went out on the ME/CFS Emergency Action List with the heading "Important petitions" which started "There are currently 3 petitions with CFS subject" but it did not mention this petition in the post:
http://www.ipetitions.com/petition/empirical_defn_and_cfs_research/

 

[Otis]

Please sign this petition

Dolphin,

Thanks for highlighting this petition. This is a critical issue to the patient community and I would urge everyone to read and sigh.

I found this on the original thread a couple of days ago a signed right away. I wasn't on the found the first time around.

Otis

 

[Dolphin]

Dolphin,

Thanks for highlighting this petition. This is a critical issue to the patient community and I would urge everyone to read and sigh.

I found this on the original thread a couple of days ago a signed right away. I wasn't on the found the first time around.

Otis

Great. If people want to link to it (and/or other petitions) in their sigs, on their blogs, etc., that'd be good. It'd be good to get up to 3000 (well, maybe 2500 should be the first target) by the next CFSAC meeting or at anytime.

Getting close to, and then over, 2000 probably helped the CFSAC make a recommendation on the issue, October 2009. Lots of people can think the CDC are still just using the Fukuda definition (one could see them try to claim this with the recent negative XMRV study) and so it can seem their definition is no different to the definition that is used in other studies. However that is not true.

 

[OverTheHills]

Bumping this important thread.

I think Len Jason is one of our most effective champions and the patient community needs to get behind him in every way. Signing this petition is an easy way to show that support, and to try to stem the CDC poison.

And as been said on another thread "Dolphin" is another great asset to us and I greatly admire the work he does writing to journals with rebuttals of the "research" from some quarters. Thankyou. I wish I had knowledge/training in biology or statistics so I could help.

OTH

PS Dolphin any update on how you/CBS/others are doing with letters on the personality disorders paper?

 

[Dolphin]

Bumping this important thread.

I think Len Jason is one of our most effective champions and the patient community needs to get behind him in every way. Signing this petition is an easy way to show that support, and to try to stem the CDC poison.

And as been said on another thread "Dolphin" is another great asset to us and I greatly admire the work he does writing to journals with rebuttals of the "research" from some quarters. Thankyou. I wish I had knowledge/training in biology or statistics so I could help.

OTH?

Thanks for your kind words.
Do I know you from elsewhere (feel free to PM if I do) - I have a feeling you're not using your real name ;-)

PS @Dolphin any update on how you/CBS/others are doing with letters on the personality disorders paper?

CBS hoped to write a letter and then get back to me a few days later - said this 11 days ago. He was hoping to get a look at the questionnaire used first. Maybe he has sent something in and didn't feel the need to contact me, who knows. I've lots of things to do, "personality" isn't really my speciality (well apart from maths/stats, I'm just learning as I go along but up to now, haven't read too much on it), I wrote a letter on something else during the week so generally I'll be leaving a letter to others but willing to help others (I've actually seen a lot worse than that article - everything becomes relative as there is a lot of rubbish published!)

 

[citybug]

I just clicked on that link and it said it was taken down. I know it was there the other day, maybe bad link? Do you know if an organization started the petition?

Thanks. I wanted to ask xmrv action to send out another email with this petition so I wanted it to be more prominent here.

 

[Tuha]

http://www.ipetitions.com/petition/empirical_defn_and_cfs_research/

Following posting another thread,
Collected information on James Jones (now the real head of the CDC's CFS program?)http://www.forums.aboutmecfs.org/sh...-(now-the-real-head-of-the-CDC-s-CFS-program-)
somebody sent me a PM to suggest I a thread on this topic here.

I was a bit disappointed when a message recently went out on the ME/CFS Emergency Action List with the heading "Important petitions" which started "There are currently 3 petitions with CFS subject" but it did not mention this petition in the post:
http://www.ipetitions.com/petition/empirical_defn_and_cfs_research/

Hi dolphin

I sent to the members of mailing list these 3 petitions but I didnt know about the petition against empiric criteria. it was possible to send it again but I think they took it down (maybe they will put it there again?). For the next time - we cannot know about all actions. if someone has a suggestion you can write us. the best way is maybe to write to Frank a private message because he is administrator of this mailing list or just start a thread about.

 

[Otis]

I just corresponded with Dolphin and the petition should be back soon.

 

[OverTheHills]

Nope, no confusing name change for me, I've always been Over The Hills and far away (aka Eileen). Took me ages to work out who Dolphin was though.

 

[Dolphin]

I just corresponded with Dolphin and the petition should be back soon.

The petition is now back online: http://www.ipetitions.com/petition/empirical_defn_and_cfs_research/

 

[Dolphin]

Hi dolphin

I sent to the members of mailing list these 3 petitions but I didnt know about the petition against empiric criteria. it was possible to send it again but I think they took it down (maybe they will put it there again?). For the next time - we cannot know about all actions. if someone has a suggestion you can write us. the best way is maybe to write to Frank a private message because he is administrator of this mailing list or just start a thread about.

Thanks for taking the time to write, Tuha. It's up again now. Maybe worth considering for next one?

 

[Dolphin]

In case people don't know, this was the definition that the CDC used for their recent study where no positives for XMRV were found.
Some comments on this are at:
http://www.retrovirology.com/content/7/1/57/comments

The petition blog mentions this:
http://www.ipetitions.com/petition/empirical_defn_and_cfs_research/blog/2728
http://www.ipetitions.com/petition/empirical_defn_and_cfs_research/blog/2729

 

[citybug]

Up to 2459 signatures. Dolphin, does this have to be handed in next week with the testimony, or at the CFSAC meeting?
Does it check if you have already signed it? If we mail it out to people? Thanks.

All newbies on forum please sign!

 

[Dolphin]

Up to 2459 signatures. Dolphin, does this have to be handed in next week with the testimony, or at the CFSAC meeting?
Does it check if you have already signed it? If we mail it out to people? Thanks.

All newbies on forum please sign!

It is supposed to check. But in practice, for whatever reason, lots of signatures have to be deleted (it was at around 2550 at one stage). So it is fairly clean.

Nothing really "has" to be done with it. I included it in previous testimony as well as in submissions on the CDC's research plans. It's up to people themselves this time. I'm in the middle of writing a paper on ME/CFS (amongst other things I'm doing) so won't be sending in testimony. It's up to other people what to do with it. If it was up to 3000 I feel more passionate to use it for this meeting. It was virtually 2000 Oct 2009 when Marly Silverman of PANDORA presented it in oral testimony and the CFSAC put a criticism of the empiric criteria as one of the recommendations.

So anyway people can do what they like.

It'd be good to pass 2500 anyway.

The blogs contain criticisms of the empiric criteria e.g. research findings by Lenny Jason and his team.