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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Hopefully this represents them loosing some influence over journalists.
To quote charles shepherd on MEA fb
Charles Shepherd There are also a number of critical commentaries on the PACE trial being prepared for publication in a leading UK medical journal. I cannot say any more at this point but this UK coverage will add to the pressure on Psychological Medicine to carry out an independent analysis of the data in the recovery paper that they published. Dr Charles Shepherd - Hon Medical Adviser, MEA
But of course that does mean that if there really are any decent proponents out there of a more rational form of BPS (is there one?), then now is the time they really need to stand up for honesty and truth, and decide which way they want history to judge them.
I think @JamBob is saying that whilst we think of "the BPS crowd" as being mainly those in the Weasley brigade, there may be others not under his sphere of influence with less obsessive views. Almost certainly are in fact.Why would you feel sorry for them? Normal people who are just not that smart accept their limitations, not chase patronage by groups with conflicted interests in order to pursue confected glory in their field. What did they think was going to happen?
Sorry if that's overly nasty or poorly expressed.
Why would you feel sorry for them? Normal people who are just not that smart accept their limitations, not chase patronage by groups with conflicted interests in order to pursue confected glory in their field. What did they think was going to happen?
Sorry if that's overly nasty or poorly expressed.
here's hopingthings are going to improve for us whereas things for them can only get worse
The PACE trial referred to in the essay might be wrong in emphasizing increased exercise for patients with chronic fatigue syndrome. But at least the researchers acknowledge that the illness exists.
Not sure what to make of that. It's OK to do really poor research harming a patient population because at least you recognised that the disease exists?
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- main study that has been cited as proof that patients can recover with those treatments overstated some of its results. In reality, the claim that patients can recover from these treatments is not justified by the data.
That’s the finding of a peer-reviewed preliminary re-analysis of previously unpublished data from the clinical trial, the largest ever for chronic fatigue syndrome. Nicknamed the PACE trial, the core findings of the British study appeared in The Lancet in 2011 and Psychological Medicine in 2013. Patients battled for years to obtain the underlying data, and last spring, a legal tribunal in Britain, the General Regulatory Chamber, directed the release of some of the study’s information.
The impact of the trial on treatment options for the estimated one million chronic fatigue patients in the United States has been profound. The Mayo Clinic, Kaiser Permanente, WebMD, the American Academy of Family Physicians and others recommend psychotherapy and a steady increase in exercise.
But this approach can be harmful. According to a 2015 report from the Institute of Medicine, now the National Academy of Medicine, even minimal activity can cause patients prolonged exhaustion, muscle pain, cognitive problems and more. In severe cases, a short conversation or a trip to the bathroom can deplete patients for hours, days or more. In surveys, patients routinely report deterioration after a program of graded exercise. The psychotherapeutic intervention also encourages patients to increase their activity levels.
Many patients (including one of us) have remained ill for years or decades with chronic fatigue syndrome, also known as myalgic encephalomyelitis, or ME/CFS. It can be triggered by a viral infection, resulting in continuing or recurring immunological and neurological dysfunction. The Institute of Medicine dismissed any notion that it is a psychiatric illness.
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