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

[Dolphin]

New Thread: http://forums.phoenixrising.me/inde...a-real-illness-editorial-komaroff-2015.38119/

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

Editorials | 16 June 2015
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Real Illness
Anthony L. Komaroff, MD


Chronic fatigue syndrome (named by some as myalgic encephalomyelitis/chronic fatigue syndrome [ME/CFS]) frustrates many physicians. That is understandable because there are no diagnostic tests or proven treatments. Some physicians even insist that the illness has no biological basis. Patients who seek help from such physicians are unlikely to have a satisfying therapeutic experience. 1–4). I will recap their answers to important questions.

 

[Dolphin]

Ganiats TG. Redefining the chronic fatigue syndrome. Ann Intern Med. 2015; 162:653-4.

Thread at: http://forums.phoenixrising.me/inde...e-chronic-fatigue-syndrome.37996/#post-605514

This paper is mentioned in the Komaroff editorial. However, it came out before (it's on the IoM report).

 

[Dolphin]

Thread at: http://forums.phoenixrising.me/index.php?threads/p2p-final-report.38120/

Free full text at: http://annals.org/article.aspx?articleid=2322804#Abstract

Position Papers | 16 June 2015
National Institutes of Health Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Carmen R. Green, MD; Penney Cowan; Ronit Elk, PhD; Kathleen M. O'Neil, MD; and Angela L. Rasmussen, PhD

The National Institutes of Health (NIH) Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome was cosponsored by the NIH Office of Disease Prevention and the Trans-NIH Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Research Working Group.

A multidisciplinary working group developed the agenda, and an Evidence-based Practice Center prepared an evidence report through a contract with the Agency for Healthcare Research and Quality to facilitate the discussion.

During the 1.5-day workshop, invited experts discussed the body of evidence and attendees had the opportunity to comment during open discussions.

After weighing evidence from the evidence report, expert presentations, and public comments, an unbiased, independent panel prepared a draft report that identified research gaps and future research priorities.

The report was posted on the NIH Office of Disease Prevention Web site for 4 weeks for public comment.

 

[Dolphin]

Thread at: http://forums.phoenixrising.me/inde...-a-nih-pathways-to-prevention-workshop.38121/

Free full text: http://annals.org/article.aspx?articleid=2322801

Reviews | 16 June 2015
Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop FREE
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

Ann Intern Med. 2015;162(12):841-850. doi:10.7326/M15-0114

Abstract

Background: Myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) is a debilitating multisystem condition affecting more than 1 million adults in the United States.

Purpose: To determine benefits and harms of treatments for adults with ME/CFS and identify future research needs.

Data Sources: MEDLINE, PsycINFO, and Cochrane databases (January 1988 to September 2014); clinical trial registries; reference lists; and manufacturer information.

Study Selection: English-language randomized trials of the effectiveness and adverse effects of ME/CFS treatments.

Data Extraction: Data on participants, study design, analysis, follow-up, and results were extracted and confirmed. Study quality was dual-rated by using prespecified criteria; discrepancies were resolved through consensus.

Data Synthesis: 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). Trials of galantamine, hydrocortisone, IgG, valganciclovir, isoprinosine, fluoxetine, and various complementary medicines were inconclusive (insufficient evidence). Counseling therapies and graded exercise therapy compared with no treatment, relaxation, or support improved fatigue, function, global improvement, and work impairment in some trials; counseling therapies also improved quality of life (low to moderate strength of evidence). Harms were rarely reported across studies (insufficient evidence).

Limitation: Trials were heterogeneous and were limited by size, number, duration, applicability, and methodological quality.

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.

Primary Funding Source: Agency for Healthcare Research and Quality. (PROSPERO: CRD42014009779)

 

[Dolphin]

Thread at: http://forums.phoenixrising.me/inde...-a-nih-pathways-to-prevention-workshop.38122/

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

Reviews | 16 June 2015
Diagnostic Methods for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop FREE
Elizabeth Haney, MD; M.E. Beth Smith, DO; Marian McDonagh, PharmD; Miranda Pappas, MA; Monica Daeges, BA; Ngoc Wasson, MPH; and Heidi D. Nelson, MD, MPH

Ann Intern Med. 2015;162(12):834-840. doi:10.7326/M15-0443



Abstract

Background: The diagnosis of myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) is based on clinical criteria, yet there has been no consensus regarding which set of criteria best identifies patients with the condition. The Institute of Medicine has recently proposed a new case definition and diagnostic algorithm.

Purpose: To review methods to diagnose ME/CFS in adults and identify research gaps and needs for future research.

Data Sources: MEDLINE, PsycINFO, and Cochrane databases (January 1988 to September 2014); clinical trial registries; and reference lists.

Study Selection: English-language studies describing methods of diagnosis of ME/CFS and their accuracy.

Data Extraction: Data on participants, study design, analysis, follow-up, and results were extracted and confirmed. Study quality was dual-rated by using prespecified criteria, and discrepancies were resolved through consensus.

Data Synthesis: Forty-four studies met inclusion criteria. Eight case definitions have been used to define ME/CFS; a ninth, recently proposed by the Institute of Medicine, includes principal elements of previous definitions. Patients meeting criteria for ME represent a more symptomatic subset of the broader ME/CFS population. Scales rating self-reported symptoms differentiate patients with ME/CFS from healthy controls under study conditions but have not been evaluated in clinically undiagnosed patients to determine validity and generalizability.

Limitations: Studies were heterogeneous and were limited by size, number, applicability, and methodological quality. Most methods were tested in highly selected patient populations.

Conclusion: Nine sets of clinical criteria are available to define ME/CFS, yet none of the current diagnostic methods have been adequately tested to identify patients with ME/CFS when diagnostic uncertainty exists. More definitive studies in broader populations are needed to address these research gaps.

Primary Funding Source: Agency for Healthcare Research and Quality. (PROSPERO: CRD42014009779)

 

[medfeb]

Good idea, Dolphin. Edited the initial post to provide links to those threads. THere's also an article on the Diagnostics part of the Evidence REview. Did you create a thread for that? If not, I don't mind doing it.

the link is here
http://annals.org/article.aspx?articleid=2322800

Edited - Just saw it! Thanks

 

[Sasha]

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

Edited: 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

Edited: 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=2322801

Edited: Discuss at this thread - http://forums.phoenixrising.me/inde...-a-nih-pathways-to-prevention-workshop.38122/
​

Thanks for this, @medfeb - I've edited it into my OP above.

BTW, the third journal link (for the diagnosis paper) is incorrect - it should be:

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

 

[medfeb]

Thanks, Sasha. Fixed

 

[Never Give Up]

Tic tock. It's almost time!

 

[Sean]

Where is the link for the feed? Nothing obvious on their site.

https://prevention.nih.gov/programs...workshops/me-cfs/workshop-resources#telebrief

 

[Sidereal]

Where is the link for the feed? Nothing obvious on their site.

https://prevention.nih.gov/programs...workshops/me-cfs/workshop-resources#telebrief

Seems you have to dial in from your phone?

 

[Dolphin]

People might be able to dial in from other countries using Skype/similar?

 

[Sidereal]

People might be able to dial in from other countries using Skype/similar?

Yes, but how much would it cost? I understand this is a toll-free number in the US but dialling from abroad may be a different issue.

 

[Never Give Up]

Seems you have to dial in from your phone?

Yes.

 

[Sean]

They mention closed captioning, which implies a video component.

 

[Never Give Up]

Musak.

 

[Never Give Up]

It's starting.

 

[Sasha]

I just dialled the number and was asked to input that code, "followed by the pound sign". I haven't got a pound sign! I got cut off.

 

[Sidereal]

I just dialled the number and was asked to input that code, "followed by the pound sign". I haven't got a pound sign! I got cut off.

Try #

 

[Never Give Up]

An operator answered and asked me for my name, organization, and email address before putting me through.

@Sasha, I remember Cort had full instructions in a blog post.