Pathways to prevention report

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."

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.

Pathways to Prevention workshop position papers

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

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

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

* 2016, July 2016 Addendum

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

• Carmen Green, Chairperson
• Penney Cowan
• Ronit Elk
• Kathleen O'Neil
• Angela Rasmussen

Working group members

• Susan Maier, Chairperson
• Jody Engel
• Carmen Green
• Mady Hornig
• Suchitra Iyer
• Leonard Jason
• M. Katherine Jung
• Nancy Klimas
• Deborah Langer
• Janet Maynard
• Marian McDonagh
• Robert Miller (patient and advocate, Reno, Nevada)
• Elizabeth Neilson
• EunChung Park
• Wilma Peterman Cross
• Peter Rowe
• Leorey Saligan
• Mariela Shirley
• M.E. Beth Smith
• Paris Watson
• Jessica Wu

Notable findings

Patients are treated poorly

"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."

ME/CFS is not a psychological disease

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

Criticism of the Oxford criteria

• "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)."
• "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"

Diagnostic uncertainty

• "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."

Learn more

• Full text of position paper
• IACFS/ME Response to P2P Draft Report on ME/CFS The IACFSME response to P2P report (PDF)

See also

• Institute of Medicine report

creatine (CR) - A natural substance that turns into creatine phosphate in the body, which helps make ATP. ATP provides the energy for muscles Often taken as a supplement to improve sports performance. (Learn more: www.webmd.com)

myalgic encephalomyelitis (M.E.) - 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.

See myalgic encephalomyelitis.

See chronic fatigue syndrome.

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

See cognitive behavioral therapy.

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

See Graded exercise therapy.

myalgic encephalomyelitis (M.E.) - 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.

myalgic encephalomyelitis (M.E.) - 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.