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Telebriefing on P2P final report: Tues June 16, 11am EDT

S

Sasha

Fine, thank you
Messages
17,863
Location
UK
http://my.meaction.net/events/nih-telebriefing-advancing-the-research-on-me-cfs

My bolding.

#MEAction said:
The NIH Pathways to Prevention workshop panel will hold a press telebriefing to discuss their findings and answer questions from members of the media. Shortly after the conclusion of the telebriefing, an audio playback will be available for a four week period.

For more information on the workshop, visit https://prevention.nih.gov/programs-events/pathways-to-prevention/workshops/me-cfs Closed captioning is available upon request; we will need 72 hours advance notice for this service.

WHEN: Tuesday, June 16, 2015, 11 a.m. EDT

WHERE: Telebriefing Phone Number: 888-428-7458 (U.S. and Canada), 862-255-5400 (Other International Callers)

Please reference the NIH Pathways to Prevention program on Advancing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. All interested parties are welcome to listen in, but the panel will only be accepting questions from members of the media.

Audio Playback Phone Number: 888-640-7743 (U.S. and Canada), 754-333-7735 (Other International Callers)

Enter replay code 118646.

http://www.nih.gov/news/health/jun2015/odp-02.htm
Click to expand...

Edit: Thanks to @medfeb below for the following summary of the three journal papers that have been published in anticipation of the report:

Annals article on the P2P - http://annals.org/article.aspx?articleid=2322804
Discuss at this thread - http://forums.phoenixrising.me/index.php?threads/p2p-final-report.38120/

AHRQ Annals Treatment report article - http://annals.org/article.aspx?articleid=2322801
Discuss at this thread - http://forums.phoenixrising.me/inde...-a-nih-pathways-to-prevention-workshop.38121/

AHRQ Annals diagnostic report article - http://annals.org/article.aspx?articleid=2322800
Discuss at this thread - http://forums.phoenixrising.me/inde...-a-nih-pathways-to-prevention-workshop.38122/
 
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V

Valentijn

Senior Member
Messages
15,786
Esther12 said:
This has come up quick. I've got the sense of dread I normally get with CFS stuff... there have been a few glimmers of hope recently, but that just means that it will be more crushing if it's as bad as most CFS stuff.
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I think it's very reasonable to expect this one to be bad. They gave a lot of weight to PACE in the draft, and have bullshit excuses for ignoring high-quality contrary evidence. Either they set out with an agenda to favor the BPS approach, or the people reviewing the available research were not willing to read beyond the (badly spun) abstracts of many papers.

But at least we have the IOM report to smack them over the head with now :cool:
 
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SOC

SOC

Senior Member
Messages
7,849
Valentijn said:
I think it's very reasonable to expect this one to be bad. They gave a lot of weight to PACE in the draft, and have bullshit excuses for ignoring high-quality contrary evidence. Either they set out with an agenda to favor the BPS approach, or the people reviewing the available research were not willing to read beyond the (badly spun) abstracts of many papers.

But at least we have the IOM to smack them over the head with now :cool:
Click to expand...
***Wishful thinking alert***

Given that they now know we have the IOM report to smack them over the heads with, what are the odds they'll backpedal on their draft? They probably don't want to look like idiots or dinosaurs (or both).

If only....
 
V

Valentijn

Senior Member
Messages
15,786
SOC said:
Given that they now know we have the IOM report to smack them over the heads with, what are the odds they'll backpedal on their draft? They probably don't want to look like idiots or dinosaurs (or both).
Click to expand...
Yeah, that's the one hope we can hold onto for another 24 hours or so. But it's still a long-shot.
 
S

Sean

Senior Member
Messages
7,378
Esther

The blurb on that P2P page was updated less than 3 weeks ago, and if it is in any way indicative of what is coming in the final report, then I don't see much comfort in it for the psychs.

But we shall see soon enough.
 
M

medfeb

Senior Member
Messages
491
The published journal articles for P2P and AHRQ have been posted online - these are both in the Annals. The final P2P report is not yet available

Edited: Haven't read the report yet but someone said it looks like its probably the final report.

Edited to add the links to threads that Dolphin created for discussion of each article.

Annals article on the P2P - http://annals.org/article.aspx?articleid=2322804

AHRQ Annals Treatment report article - http://annals.org/article.aspx?articleid=2322801

AHRQ Annals diagnostic report article - http://annals.org/article.aspx?articleid=2322800
 
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D

Denise

Senior Member
Messages
1,095
medfeb said:
The published journal articles for P2P and AHRQ have been posted online - these are both in the Annals.

The final P2P report is not yet available

P2P Annals article - http://annals.org/article.aspx?articleid=2322804
AHRQ Annals article - http://annals.org/article.aspx?articleid=2322801
Click to expand...




I just found two additional articles in Annals:


Diagnostic Methods for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop


http://annals.org/article.aspx?articleid=2322800


Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Real Illness

http://annals.org/article.aspx?articleid=2322808
 
B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop
M.E. Beth Smith, DO; Elizabeth Haney, MD; Marian McDonagh, PharmD; Miranda Pappas, MA; Monica Daeges, BA; Ngoc Wasson, MPH; Rongwei Fu, PhD; and Heidi D. Nelson, MD, MPH
http://annals.org/article.aspx?articleid=2322801
Beth Smith et al. said:
Among 35 treatment trials enrolling participants primarily meeting the 1994 Centers for Disease Control and Prevention and Oxford case definitions of CFS, the immune modulator rintatolimod improved some measures of exercise performance compared with placebo in 2 trials (low strength of evidence).
Click to expand...

I was wondering why I've never heard of rintatolimod, if it has some efficacy. It's another name for Ampligen.
 
Esther12

Esther12

Senior Member
Messages
13,774
I've only skimmed through them all, but it looks a bit bad and disappointing to me. It could have been even worse.

That's not a huge consolation.

Maybe it's moving things in a slightly more reasonable direction that might pay off in fifteen years time, but I could see nothing there that will really help improve the obvious problems that are occurring right now.
 
Kati

Kati

Patient in training
Messages
5,497
In regards to this paper

http://annals.org/article.aspx?articleid=2322801
Conclusion:Trials of rintatolimod, counseling therapies, and graded exercise therapy suggest benefit for some patients meeting case definitions for CFS, whereas evidence for other treatments and harms is insufficient. More definitive studies comparing participants meeting different case definitions, including ME, and providing subgroup analysis are needed to fill research gaps

They didn't even take into account that Oxford definition is different from CCC.

Garbage in, garbage out.
 
SOC

SOC

Senior Member
Messages
7,849
Kati said:
They didn't even take into account that Oxford definition is different from CCC.
Garbage in, garbage out.
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It bothered me a lot that P2P, a supposed US-based initiative, considered any research using the UK Oxford criteria which are majorly flawed. Oxford doesn't come close to defining the same illness as the ICC, the CCC, Fukuda, or even the CDC empiric, which is pretty bad itself.

I second "Garbage in, garbage out".
 
Kati

Kati

Patient in training
Messages
5,497
SOC said:
It bothered me a lot that P2P, a supposed US-based initiative, considered any research using the UK Oxford criteria which are majorly flawed. Oxford doesn't come close to defining the same illness as the ICC, the CCC, Fukuda, or even the CDC empiric, which is pretty bad itself.

I second "Garbage in, garbage out".
Click to expand...
But they mentioned it was garbage in their draft report. I just don't understand how the draft report and the articles presented to journals are so different
 
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