Just posting my
initial reaction...
I'm
very impressed! It has a
major emphasis on recommending proper biomedical research.
On initial reading, there are only about four or five lines that I didn't like.
I've posted my dislikes, and a selection of my likes below. I've highlighted my key words in
blue...
Dislikes:
282 Studies addressing
283 biopsychosocial parameters (including the mind-body connection), function,
284 and QOL should be encouraged.
362 The modest benefit from CBT should be studied as adjunct to
363 other modalities of treatment such as self-management.
I think that saying there is an overlap with depression is misleading, and unhelpful:
32 Despite the absence of a clear definition, an estimated million people have
33 ME/CFS, and it overlaps with many other diseases (e.g., fibromyalgia, major depressive
34 disorder, chronic pain).
93 A multitude of symptoms are associated with ME/CFS, with
94 substantial overlap with other pathologic diseases (e.g., fibromyalgia, major depressive disorder,
95 and a variety of chronic pain or inflammatory conditions).
I'm not familiar with the depression scale recommended below, but studies using depression scales are often misleading:
293 Use of already well-validated measures developed by the NIH such as the
294 Patient-Reported Outcomes Measurement Information System (PROMIS) and
295 the Center for Epidemiological Studies Depression scale (CESD) should be
296 encouraged.
Likes:
I like loads of it, but these are some items that particularly stuck out...
92 Although psychological repercussions (e.g., depression) often follow ME/CFS, this is not a
93 psychological disease in etiology.
296 Although ME/CFS is not a psychiatric disease, exploring
297 psychiatric comorbidities such as depression, anxiety, and fear is critical to
298 improve quality of life.
38 The Oxford criteria (published in the Journal of the Royal
39 Society of Medicine in February 1991) are flawed and include people with other conditions,
40 confounding the ability to interpret the science.
378 Specifically, continuing to use the Oxford definition may impair progress and cause
379 harm. Thus, for needed progress to occur we recommend (1) that the Oxford definition be
380 retired, (2) that the ME/CFS community agree on a single case definition (even if it is not
381 perfect), and (3) that patients, clinicians, and researchers agree on a definition for meaningful
382 recovery.
313 We believe ME/CFS is a
314 distinct disease that requires a multidisciplinary care team (e.g., physicians, nurses,
315 case managers, social workers, psychologists) to optimize care.
113 Existing treatment studies (cognitive behavioral therapy [CBT] and graded exercise therapy
114 [GET]) demonstrate measurable improvement, but this has not translated to improvements in
115 quality of life (QOL). Thus, they are not a primary treatment strategy and should be used as a
116 component of multimodal therapy.
82 There is reproducible evidence of neurocognitive dysfunction with abnormalities in functional
83 magnetic resonance imaging (fMRI) and positron emission tomography (PET) studies. Strong
84 evidence indicates immunologic and inflammatory pathologies, neurotransmitter signaling
85 disruption, microbiome perturbation, and metabolic or mitochondrial abnormalities in ME/CFS,
86 potentially important for defining and treating ME/CFS.
