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)

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. 3.03.1 Haney, Elizabeth; Smith, M.E. Beth; McDonagh, Marian; Pappas, Miranda; Daeges, Monica; Wasson, Ngoc; Nelson, Heidi D. (Jun 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. 4.04.14.2 Green, Carmen R.; Cowan, Penney; Elk, Ronit; O'Neil, Kathleen M.; Rasmussen, Angela L. (Jun 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. 5.05.15.2 Smith, M.E. Beth; Haney, Elizabeth; McDonagh, Marian; Pappas, Miranda; Daeges, Monica; Wasson, Ngoc; Fu, Rongwei; Nelson, Heidi D. (Jun 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. 

Myalgic encephalomyelitis or chronic fatigue syndrome, often used when both illnesses are considered the same.

Myalgic encephalomyelitis or M.E. has different diagnostic criteria to chronic fatigue syndrome; neurological symptoms are required but fatigue is an optional symptom.<ref name="ICP2011primer">{{Citation

The information provided at this site is not intended to diagnose or treat any illness.
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history.