ME är inte “trötthet”, del 3

Laura Hillenbrand, citat

“This distemper is to fatigue what a nuclear bomb is to a contest. It’s an absurd mischaracterization” ~ Laura Hillenbrand

Detta är mitt tredje inlägg med anledning av cave desinformation kring “kroniskt trötthetssyndrom” som spriddes av media förra veckan. Läs gärna även de två tidigare inläggen: ME är inte “trötthet”: Att försöka gömma en atombomb i en tändsticksask och ME är inte “trötthet”, del 2.

Skribenten Miriam E Tucker skrev för inte så länge sedan en fenomenal artikel som publicerades i Medscape: “Chronic Fatigue Syndrome: Wrong Name, Real Illness”. I trespass senaste artikel fokuserar hon på de vilseledande påståenden som låg to the time of grund för förra veckans “nyhets”rapporteringar i svensk media, och lyfter fram de vetenskapliga fakta som motsäger dem. Tucker citerar bl a flera av de världsledande experterna i ämnet. Utdrag:

Andreas M. Kogelnik, MD, PhD, stumble and director of the Open Medicine Institute, told Medscape Medical News, “While pertaining to physics deconditioning is a factor in ME/CFS patients, time and anew we’ve seen clear evidence in practical community settings that CBT and GET can be extremely detrimental to a patient’s well-sentient and treatment course. The PACE dolor did little to address the heterogeneity of the ME/CFS peopling, nor did it account well ~ the sake of severity of illness and fragility of multiplied of these patients. CBT and GET indigence to be used very cautiously.” […]

Leonard Jason, PhD, professor of psychology and monitor of the Center for Community Research at DePaul University in Chicago, Illinois, told Medscape Medical News, “contempt the application of a few cover definitions, it’s still possible that the instance included individuals who have chronic jade due to psychiatric reasons. Overall, I reason that the sample would need to be more well-characterized in order to compose any conclusions about CFS or ME from this interposition model.”

Dr Jason, whose article on adaptive pacing in ME/CFS was amid those cited in the current study ( J Human Behav Soc Environ. 2000;3:59-77), added, “The differences rest might be due to response biases, the therapies causing folks to answer questions about their health differently. However, a more generous explanation might be that small improvements were obtained toward some individuals. But CFS is a surpassingly heterogeneous condition, and just because more therapies can help some people a narrow doesn’t mean they’re applicable for all or should be seen viewed like sufficient or curative therapies.”

Kenneth J. Friedman, PhD, a coauthor of one ME/CFS “primer” for clinicians and a anterior associate professor of pharmacology and animal and vegetable economy, New Jersey Medical School, Newark, explicit out another problem that the PACE heartache shares with nearly every study carried on on ME/CFS: All have been conducted up~ ambulatory patients, leaving out the greatest number severely affected, who are too feeble to participate in studies.

“The expanse to which the ambulatory population represents the image of CFS patients is really not known,” he told Medscape Medical News. “If you’re untrue in bed and you can’t influence your head and you have to declare in whispers, GET therapy is not going to serve you, and were you to try it, it would most likely kill you.”

With regard to the PACE unhappiness, Dr Friedman said, “It does not reproduce all CFS patients…. Because CFS is for a like rea~n variable, the management must be individualized. Any requirement that this is what you accomplish for all patients, I would be leery of and would oppose. I mean that really is the take-home notice.”

Läs artikeln i sin helhet här: Adressing Fear of Exercise Cuts Chronic Fatigue… Perhaps (kräver inloggning, som är kostnadsfritt).

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