In the U.S., the P2P Draft Report for ME/CFS is posted: https://prevention.nih.gov/docs/programs/mecfs/ODP-MECFS-DraftReport.pdf I have read through this report, and my overall impression is that this report lacks any substance at all. On close examination, it becomes obvious that the report does, indeed, say that ME/CFS (not distinguishing between the two and treating it as one illness) is psychological and requires treatment with psychotherapy and exercise. Although they say (line 99) Future studies should distinguish between ME/CFS alone, ME/CFS with comorbidities, and other 100 diseases. they do not recommend that future research distinguish between M.E. and the wastebasket diagnosis of CFS. In an obvious attempt to convince M.E. patients that this report is favorable to patients, the panel has thrown in a lot of verbage which pays homage to patients without saying anything of substance. They do admit that ME/CFS exists. (line 32) Since the government has spent a lot of tax dollars on this particular workshop which is supposed to examine the research on this illness, I am glad to hear that they admit the existence of the illness. They have some trouble deciding whether the existing research has been based on men or women. First they say (line 5) that ME/CFS affects a million people (Where do they get that figure? They do not say . Do they mean a million people in the world or in the USA? They do not say.) and they say the affected are “mostly women.” Then they say there has been “a research focus on men.” (line 52) Then later they say that “Clinical studies have focused on predominantly Caucasian, middle-aged women.” (line 88-89) This is confusing to say the least. Another major problem is the way they treat the cause of the illness. They say “Although psychological repercussions (e.g., depression) often follows ME/CFS, this is not a psychological disease in etiology.” (line 92-93) Please note the careful wording of the report. They are saying that the original cause of ME/CFS is not psychological in nature. Sir Simon Wessely says the same. He says that ME/CFS begins with an acute physical problem (i.e., a physical etiology) and then continues as a psychological problem due to the patients’ “false illness beliefs.” One particularly worrisome statement is this one “Existing treatment studies (cognitive behavioral therapy [CBT] and graded exercise therapy [GET]) demonstrate measurable improvement, but this has not translated to improvements in quality of life (QOL). Thus, they are not a primary treatment strategy and should be used as a component of multimodal therapy.” (line 113) This statement should strike fear into the hearts of M.E. patients who are well aware that CBT does not help patients and GET can actually harm most M.E. patients. The recommendation for “multimodal therapy” is also scary. According to the American Psychological Association (apa.org/pubs/videos/4310817.aspx ) multimodal therapy “begins with the assumption that therapy must assess seven discrete but interactive modalities (abbreviated by the acronym BASIC ID, which stands for Behavior, Affect, Sensation, Imagery, Cognition, Interpersonal factors, and Drug/Biological considerations.) This psychoeducational framework encourages therapists to improvise and tailor therapy to the client. In other words, ME/CFS patients need psychological therapy, however, this report does not recommend the psychological therapy defined as Cognitive Behavioral Therapy, but rather another psychological therapy called “multimodal therapy.” As to graded exercise therapy, this report says that “In many cases, lack of instructions or guidance for including graded exercise therapy often causes additional suffering, creating fear of harm from a comprehensive self-management program that may include some physical activity.” (line 135) Is this a joke? Are these people unaware that many severely affected M.E. patients do not have sufficient energy to take a daily shower or brush their teeth, and many are bedbound? So what they are saying here is that stupid M.E. patients are unable to understand how to do graded exercise therapy correctly (not to mention the ignorant “physical therapists” who tell us to go beyond our energy envelopes and increase our exercise each day) and that causes us to be afraid to do graded exercise therapy rather than actual harm. No, NIH/P2P Panel, it is the physical harm caused to M.E. patients by GET and not our fear of exercise that causes the problem. Over and over again, this report says that there is no clear definition of ME/CFS. Yes, that much is true. Myalgic Encephalomyelitis (M.E.) is one disease and Chronic Fatigue Syndrome (CFS) is another. So of course there is no clear definition. If the two illnesses are separated, there certainly is a clear definition of M.E. Actually, there are two clear definitions, the Revised Canadian Consensus Definition (CCC) (see: mecfsforums/wiki/Revised_Canadian_Consensus_Definition ) and the International Consensus Criteria (ICC) (See: mecfsforums/wiki/Myalgic_Encephalomyelitis:_International_Consensus_Criteria ). Furthermore, 51 research and clinical experts on M.E. agreed that the CCC definition should be used for both research and clinical purposes and sent Open Letters to the Secretary of HHS saying so. This occurred in September and October of 2013—long before this NIH/P2P Workshop. See: mecfsforums/wiki/Open_Letter_to_Hon._Kathleen_Sebelius_9/23/2013 mecfsforums/wiki/Open_Letter_to_the_Honorable_Kathleen_Sebelius,_U.S._Secretary_of_Health _and_Human_Services_10/25/2013 In summary, this document is a very carefully written report full of nonsense. It says nothing new. It is very carefully worded to get the point across that the treatments which should be recommended to M.E. patients are psychotherapy and exercise; however, it is worded in such a way as to appear to patients not to be doing so. This covert attempt to mislead patients is an insult to intelligent M.E. patients. We see what they are trying to do. It will not work. As a group, M.E. patients are a well-educated group, and we see this attempt to deceive us--again--as the slap in the face it actually is.
Posted on: Sat, 20 Dec 2014 19:33:57 +0000
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