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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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We changed our original protocol’s threshold score for being within a normal range on this measure from a score of >=85 to a lower score as that threshold would mean that approximately half the general working age population would fall outside the normal range. The mean (S.D.) scores for a demographically representative English adult population were 86.3 (22.5) for males and 81.8 (25.7) for females (Bowling et al. 1999). We derived a mean (S.D.) score of 84 (24) for the whole sample, giving a normal range of 60 or above for physical function.
How do these results compare with previous studies? We are not aware of any previous studies that have compared comprehensively defined recovery between different treatments. Two studies of recovery in adults after CBT found similar proportions in recovery: 23% and 24% (Deale et al. 2001; Knoop et al. 2007), compared with 22% in the PACE trial. [...] The other study used similar criteria and domains for recovery (Knoop et al. 2007), but the definition for normal range used was the more liberal population mean -2S.D. rather than the more conservative 1 S.D. that we used; the treatment was delivered by therapists in one specialist CFS centre and outside of a trial setting.
"The ME Association helps patients suffering from ME but often acts to perpetuate the disease process which, by some, is considered incurable"
(on the revised recovery criteria)
MEA chairman Neil Riley unpicks a central thread in the PACE Trial
But here’s the thing. I am not recovered. I am nowhere near my pre-illness state. I cannot do the vast majority of things I could do before I had M.E. My life is still severely and dramatically restricted and limited by this condition. I cannot get out of bed at 5am, go for a run or a cycle, get ready for work, commute, work at full day, maybe stop for grocery shopping on the way home, repeat four more times, then spend the weekend mountain biking, camping or dancing. I cannot work full time. A full week’s exercisey moving around stuff now is about the equivalent of one day’s gym-going pre-illness, if I can do it at all. It takes a looooong time to recover from a cold or flu.
I am better than I was. I have better days, weeks and months. I have fewer periods of being completely bed-bound or house-bound. But I am not recovered. Even when I say I’m feeling great today.
To quote the article linked at the top, “Here’s a suggestion, dear researchers. Why not go back and ask those patients if they can now do what they did before they were ill”.
BMJ Open 2014;4:e005374 doi:10.1136/bmjopen-2014-005374
How common are symptoms? Evidence from a New Zealand national telephone survey
Keith J Petrie1,
1Department of Psychological Medicine, University of Auckland, Auckland, New Zealand
2Department of Medicine, University of Auckland, Auckland, New Zealand
To assess the frequency of symptoms in a general population sample over the previous week and the associations between symptom reporting and demographic factors, medical visits and medication use.
A representative general population sample (n=1000) was recruited using random digit dialling. Participants were asked whether they had experienced any of a list of 46 symptoms in the previous 7 days and if so, whether the symptom was mild, moderate or severe. Demographic data and information on medical visits and medication use were also collected.
Symptom reporting was very common. The median number of symptoms reported by participants in the previous week was 5 with only 10.6% of participants reporting no symptoms. The five most common symptoms in the previous 7 days were: back pain (38%), fatigue (36%), headache (35%), runny or stuffy nose (34%) and joint pain (34%). The five symptoms rated highest in terms of severity were sexual difficulties, vomiting, tremor, suicidal thoughts and sleep problems. Symptom reporting was significantly positively associated with medical visits in the previous year and current medication taking. Women reported a significantly greater number of symptoms. We found no significant association between age or household size and symptom reporting.
This population-based study found that symptoms are more commonly experienced in the general population than previously estimated and are strongly associated with healthcare visits. Appreciation of the high prevalence of symptoms may help normalise the experience of symptom reports among the general population.
The problem is that they had a "crock-of-s*it" definition of recovery so they're claiming 21%/22% recovery rates. If they'd published what they said they would publish (the recovery criteria in the protocol), everyone could see what you say.Scanning the forum today i saw the heading and thought if this cbt/get crap worked we would have alot of people discussing how great they feel after being treated etc. if there is any positive personal experiences with it posted then there isnt many.
Its good they did that study so now we definately know its a crock of s-it.
Fred Friedberg Warns Against Overstating Recovery Results in Studies of Chronic Fatigue Syndrome
commentary, Dr. Friedberg and Ms. Adamowicz pointed out that because the term “recovery” was used to refer only to recovery from the current episode, the outcomes would more accurately be described in terms of remission rather than recovery. They noted too that the definition of recovery used in the report does not include the subjects’ perceptions of their health status, particularly if they view themselves as recovered.
They concluded that because a recovery rate below 25% still leaves the majority of patients with significant symptoms and impairments, “the publicity generated by trumpeting recovery outcomes in CFS far exceeds the relatively modest results found for most patients in behavioral treatment research.”
Dr. Friedberg is an Associate Professor and Ms. Adamowicz is a Senior Research Analyst in the Department of Psychiatry at Stony Brook University. Their commentary, titled “Reports of recovery in chronic fatigue syndrome may present less than meets the eye,” was published in the August 2014 issue of Evidence Based Mental Health. It was first published on line on May 21, 2014. The recovery data from the PACE trial were reported in an article by Peter D. White, et al. published in the October 13 edition ofPsychological Medicine under the title “Recovery from chronic fatigue syndrome after treatments given in the PACE trial.”
That might be a good idea, but we would have to ensure that it was truly open, and not phrased in such a way that only the dissatisfied would get involved. It would also need to be monitored carefully so that anyone posting positive comments was not harassed.
You can score 60 or 65 and be counted as recovered in the overall sense if you score 5 or less on the CFQ (Chalder Fatigue Questionnaire). If you score 5 or less on the CFQ, you no longer satisfy the Oxford criteria. So, for example, a score of 20 on the SF-36 PF and CFQ=5 and the person would no longer satisfy the Oxford criteria - it isn't just people with scores of over 65 who no longer satisfy the Oxford criteria. So you can be recovered using all the criteria with a score of 60 or 65.
If one looks at Table 1 in the recovery paper (i'll send it on to you), one can see that more people in the APT group don't satisfy the Oxford criteria than are in the normal range on the SF-36 PF i.e. some people who don't satisfy the Oxford criteria have SF-36 PF scores of less than 60.
Other researchers have been critcial of that trial. A number of experts have taken issue with the authors' definition of recovery, Jason says
Further, he adds, the researchers used a broad case definition of CFS and likely included people who actually suffered from depression.
“We know that cognitive-behavioral therapy is one of the best treatments for major depressive disorder,” Jason says, so you’d expect them to improve following the treatment.
Incorrectly including those people in the study could have skewed the results.
In Jason’s view, it’s dangerous to promote cognitive- behavioral therapy as a cure for CFS.
“We have to be very careful. The patient community generally has a strong disdain for most psychologists because they feel they’ve been blamed for their own problem,” he says.
“One of the most common treatment approaches is to convince patients that they’re not sick.”
Zinn is also wary of cognitive-behavioral therapy — or any therapy that attempts to treat CFS as a psychological phenomenon.
If a therapist tries to tell people with CFS that their dysfunctional thinking is causing the disease, she says,
“They will walk out the door and not come back.”
Such a scenario can be particularly harmful, she adds, if it prevents patients from seeking the help they need.
From: Leonard Jason
See pages 67 to 70 for an article "Beyond Tired: Chronic Fatigue Syndrome remains misunderstood and understudied. Psychologists are among those trying to change that" This article just appeared in the Oct 2014 issue of the American Psychological Association’s publication the Monitor
Note that cognitive behavioural stress management is not the same as graded activity-oriented CBT.
Includes the following on the PACE Trial:
Here's more - what came next: