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 (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

chronic fatigue syndrome (CFS) - A controversial term, invented by the U.S. Centers for Disease Control, that generally refers to a collection of symptoms as “fatigue”. There have been multiple attempts to come up with a set of diagnostic criteria to define this term, but few of those diagnostic criteria are currently in use. Previous attempts to define this term include the Fukuda criteria and the Oxford criteria. Some view the term as a useful diagnostic category for people with long-term fatigue of unexplained origin. Others view the term as a derogatory term borne out of animus towards patients. Some view the term as a synonym of myalgic encephalomyelitis, while others view myalgic encephalomyelitis as a distinct disease.

National Institutes of Health (NIH) - A set of biomedical research institutes operated by the U.S. government, under the auspices of the Department of Health and Human Services.

ME/CFS - An acronym that combines myalgic encephalomyelitis with chronic fatigue syndrome. Sometimes they are combined because people have trouble distinguishing one from the other. Sometimes they are combined because people see them as synonyms of each other.

Oxford criteria - A set of diagnostic criteria for chronic fatigue syndrome. These criteria focus on "fatigue" as the defining symptom.

Chronic Fatigue Syndrome Advisory Committee (CFSAC) - (sometimes pronounced SIF-SACK) A US government advisory council that met twice per year, covering current topics related to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Meetings usually lasted for two days and the results were presented to the Secretary of Health and Human Services (HHS). After 15 years, on September 5, 2018, CFSAC's charter was not renewed by the Department of HHS, effectively dissolving the committee without notice or warning.

myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

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.