I don't suppose Mayo would take any notice of this, but it might be worth passing it on...the IOM report is February 2015, so I think it qualifies as recent information which replaces earlier studies:
Up-to-date Information for health care professionals dealing with patients who have ME/CFS.
Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET)
These commonly recommended treatments are based on the psychosocial model of this illness, which states that patients are simply suffering from the false belief that they have a serious physical disease in which exercise will make them worse. CBT is used to change these beliefs, and GET is used to induce the patient to increase physical activity, which is given as the goal of treatment.
The trial which is used in support of the safety and effectiveness of these treatments is the PACE Trial, first reported in 2011:
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract
The design and reported outcomes of this trial are under heavy international criticism at the moment, for example:
http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/
More importantly, the report of the US Institute of Health, BEYOND MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME, Redefining an Illness,
http://www.ncbi.nlm.nih.gov/pubmed/25695122
is unequivocal that this is not a 'psychogenic' disorder.
This is from page 5:
'The primary message of this report is that ME/CFS is a serious, chronic, complex, and systemic disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts. It is “real.” It is not appropriate to dismiss these patients by saying, “I am chronically fatigued, too.”'
At the end of page 2 and the beginning of page 3, the report refers to 'the misconception that it is a psychogenic illness or even a figment of the patient's imagination'. A few lines further down in the same paragraph, it refers to 'delays in diagnosis or to misdiagnosis of a psychological problem.'
At the end of that paragraph the last sentence refers to doctors 'who often subject them to treatment strategies that exacerbate their symptoms.'. (This is undoubtedly a reference to CBT and GET.)
The beginning of the next paragraph refers to 'significant impairment and disability'
These quotations make clear that the committee confirm that this is a seriously disabling disease, not a psychiatric disorder.
Furthermore:
The last sentence before Recommendation 4:
'"Systemic exertion intolerance” captures the fact that exertion of any sort—physical, cognitive, emotional—can adversely affect these patients in many organ systems and in many aspects of their lives. The committee intends for this name to convey the complexity and severity of this disorder.'
'Recommendation 4: The committee recommends that this disorder be renamed “systemic exertion intolerance disease” (SEID). SEID should replace myalgic encephalomyelitis/chronic fatigue syndrome for patients who meet the criteria set forth in this report.'
These are on Page 11 of the Summary. and are set out on pp 227-8.
Note that 'exertion of any sort....may adversely affect these patients in many organ systems.'. This is a clear statement that the imposition of any form of exertion can do extensive, multisystem damage.
The Report thus affirms that theoretical basis of CBT is false, and that GET is a treatment which can cause systemic damage. This supports the information provided by the majority of patients, that following a program of increasing exertion when mildly or moderately ill has resulted, sometimes after a brief period of apparent improvement, in a severe and long- lasting worsening of their illness, permanent total disability and intractable pain.
This would suggest that the original treatment recommendations,, for complete rest from the inception, followed by a lifestyle adapted to the conservation of exertion would be more likely to result in improvement.
Nancy Blake
Author, 'Ramsay's Disease', 'A Beginner's Guide to ME/CFS'