Pathways to prevention report

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National Institutes of Health Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Position Paper (Green CR, Cowan P, Elk R, O'Neil KM, Rasmussen AL). The report's title is often shortened to the "P2P report."

The IACFSME organization wrote a response to the report: "Generally we agree with the majority of the Panel’s recommendations but believe that the elephant in the room – research funding – alluded to in the report (e.g. Line 8) needs to be addressed more strongly and specifically."[1]

The Chronic Fatigue Syndrome Advisory Committee of the U.S. Department of Health and Human Services assisted in the final draft of the report. The committee's recommendations for amending the draft report of the Pathways to Prevention: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome can be found here.[2]

Pathways to Prevention workshop position papers[edit | edit source]

*2015, Diagnostic Methods for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop[3] (Full Text)

*2015, National Institutes of Health Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome[4] (Full Text)

*2015, Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop[5] (Full Text)

* 2016, July 2016 Addendum[6]

The addendum to this report recommended that the Oxford criteria not be used when studying ME/CFS and downgraded the previous evidence for CBT and GET to "low quality" evidence. If studies based on the Oxford criteria were excluded, there would be insufficient evidence of the effectiveness of GET on any outcome.

Existing treatment studies examining counseling and behavior therapies or graded exercise therapy demonstrate measurable improvements but may not yield improvements in quality of life (QoL). Therefore, these interventions are not a primary treatment strategy and should be used only as a component of multimodal therapy...
Blatantly missing from this body of literature are trials evaluating effectiveness of interventions in the treatment of individuals meeting case definitions for ME or ME/CFS.

— Smith et al. Agency for Healthcare Research and Quality (US), Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome No. 219 July 2016 Addendum

Panel members[edit | edit source]

Working group members[edit | edit source]

Notable findings[edit | edit source]

Patients are treated poorly[edit | edit source]

"Both society and the medical profession have contributed to the disrespect and rejection experienced by patients with ME/CFS. They are often treated with skepticism, uncertainty, and apprehension and labeled as deconditioned or having a primary psychological disorder. Patients often make extraordinary efforts at extreme personal and physical costs to find a physician who will correctly diagnose and treat their symptoms; some are treated inappropriately, causing additional harm."[4]

ME/CFS is not a psychological disease[edit | edit source]

  • "Although psychological repercussions (such as depression) may accompany ME/CFS, it is not a primary psychological disease."[4]

Criticism of the Oxford criteria[edit | edit source]

  • "The Oxford CFS case definition is the least restrictive, and its use as entry criteria could have resulted in selection of participants with other fatiguing illnesses or illnesses that resolve spontaneously with time (16, 71)."[5]
  • "Consensus groups and researchers should consider retiring the Oxford case definition because it differs from the other case definitions and is the least restrictive, probably including individuals with other overlapping conditions"[3]

Diagnostic uncertainty[edit | edit source]

  • "In conclusion, 9 sets of clinical criteria are used 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."[5]

Learn more[edit | edit source]

See also[edit | edit source]

References[edit | edit source]

  1. IACFS/ME Response to P2P Draft Report on ME/CFS (PDF)
  2. HHS Chronic Fatigue Syndrome Advisory Committee (2015). "Comments from the HHS Chronic Fatigue Syndrome Advisory Committee" (PDF).
  3. 3.0 3.1 Haney, Elizabeth; Smith, M.E. Beth; McDonagh, Marian; Pappas, Miranda; Daeges, Monica; Wasson, Ngoc; Nelson, Heidi D. (June 16, 2015). "Diagnostic Methods for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop". Annals of Internal Medicine. 162 (12): 834. doi:10.7326/m15-0443. ISSN 0003-4819.
  4. 4.0 4.1 4.2 Green, Carmen R.; Cowan, Penney; Elk, Ronit; O'Neil, Kathleen M.; Rasmussen, Angela L. (June 16, 2015). "National Institutes of Health Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Annals of Internal Medicine. 162 (12): 860. doi:10.7326/m15-0338. ISSN 0003-4819.
  5. 5.0 5.1 5.2 Smith, M.E. Beth; Haney, Elizabeth; McDonagh, Marian; Pappas, Miranda; Daeges, Monica; Wasson, Ngoc; Fu, Rongwei; Nelson, Heidi D. (June 16, 2015). "Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop". Annals of Internal Medicine. 162 (12): 841. doi:10.7326/m15-0114. ISSN 0003-4819.
  6. Smith ME, Nelson HD, Haney E, Pappas M, Daeges M, Wasson N, McDonagh M (December 2014), "July 2016 Addendum", Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome No. 219, Agency for Healthcare Research and Quality (US), pp. 1–433, doi:10.23970/AHRQEPCERTA219, PMID 30313001, The results are consistent across trials with improvement in function, fatigue, and global improvement and provided moderate strength of evidence for improved function (4 trials, n=607) and global improvement (3 trials, n=539), low strength of evidence for reduced fatigue (4 trials, n=607) and decreased work impairment (1 trial, n=480), and insufficient evidence for improved quality of life (no trials)