“Graded exercise therapy: Chronic fatigue syndrome” by The HANDI Working Group (2019)

MSEsperanza said:
In addition, I was thinking it could be helpful to know a few studies on treatments like exercise, physiotherapeutic or psychological interventions that do comply with standards for drug interventions, i.e., randomized, adequately controlled, and blinded and, especially when blinding is not possible, measuring objective outcomes. Ideally, this should be studies on illnesses for which objective outcomes seem difficult at a first glance, too.

Comparing the ME GET and CBT studies to such 'best practice' studies could be an argument against the idea that 'we' just don't like exercise and psychotherapies or, to the more rationally arguing PACE & Cochrane defenders, that it is not possible to measure objective outcomes in some illnesses like ME.

Anyone knows such studies on other illnesses, perhaps studies that really used objectively measured employment rates or school attendance?
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Good question. I would be interested in such studies as well. My impression is that they are rare, even in other fields than ME/CFS.
 
DokaGirl said:
"However, this finding is believed to be due to inappropriately planned or progressed exercise programmes, possibly undertaken independently or under supervision from a person without appropriate experience."

"believed" and "possibly" are not facts, they are of course suppositions or assumptions.
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I think we should start making a list of all the "conclusions" which include these sorts of words. I was as guilty as anyone of not noticing them but thanks to this forum they now stand out for me. It is quite astounding how much of the BPS facts have these qualifiers.
 
Michiel Tack said:
2) “GET has been shown to reduce fatigue, prevent physical deconditioning, and improve physical functioning, sleep, cognition and mood.”
There is little evidence that GET has any influence on physical deconditioning (Vink & Vink-Niese, 2018). The Cochrane review on GET indicated there is no evidence that GET improves mood or depression (analyses 1.8 and 1.9), while effects on fatigue and physical functioning are not sustained at follow-up (analyses 1.2 and 1.6). This review is currently being revised for presenting the effects of GET too optimistically.
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Also beware of course that this is being stated in the context of CFS, where the deconditioning theory is thoroughly debunked anyway. Do not want to inadvertently imply otherwise.
 
MSEsperanza said:
The authors:
https://www.racgp.org.au/clinical-r...entions-(handi)/about-handi/about-the-authors
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Notable for the fact that none of them are exercise physiologists.

Their article makes a number of non-evidence based claims. Compliance in particular - they should note the fact that there is no data on actual compliance with the therapy, specifically actigraphy and heart rate data. Likewise there is no evidence of "boom or bust patterns of exercise" in studies which have measured patient activity levels.
 
"Two thirds have mental health disorders..."

Anyone who has seen a doctor for physical symptoms that can't be proved could receive a mental health disorder diagnosis.

We know misdiagnoses are very common - approx. 50 percent. Knowing this, it would be easy to say two thirds have a mental health disorder, without even doing an
assessment.

It also seems when once diagnosed with for example anxiety due to a traumatic event, one permanently retains that diagnosis, despite the transient nature of the event. Easy to note this from a
patient's medical file, and falsely conclude
they continue to have a mental health disorder.

Whatever happened to depression or anxiety being a logical reaction to a significant, but negative life event? The
death of a loved one. It is not illogical to
respond with sadness, depression, or maybe even anxiety. And yet, people are shamed for what is a logical reaction, and labeled with a mental health disorder.
 
Michiel Tack said:
In a later survey by Action for ME there was little difference in the reported rate of harms by GET whether the treatment was delivered by a NHS specialist (31%), the GP (45%) or others (29%). In a 2015 survey of the ME Association, “GET courses held by therapists stated to have an ME/CFS specialism made symptoms worse for 57% of respondents.” To our knowledge, there is no data indicating that the reported harms of GET are due to inappropriate delivery of the treatment.
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I would add the recent NICE survey as well. Can't really fault the source of the survey or its methodology here and it gave responses consistent with the other surveys, essentially confirming the reliability through independent validation. This isn't just patient associations, although their own surveys did turn out to have been reliable.
 
MSEsperanza said:
There seems to be a problem with their evidence assessment system. GET was rated with the highest evidence level (NHMRC level of evidence I )
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That's absurd. You literally could not have less reliable evidence than there is for GET. It's entirely subjective, minimal and only exists within carefully controlled settings with biased researchers overseeing and even "specialists" trained on this system cannot replicate in the real world.

Even homeopathy has more reliable evidence, since you can blind.
 
DokaGirl said:
"Two thirds have mental health disorders..."

Anyone who has seen a doctor for physical symptoms that can't be proved could receive a mental health disorder diagnosis.

We know misdiagnoses are very common - approx. 50 percent. Knowing this, it would be easy to say two thirds have a mental health disorder, without even doing an
assessment.

It also seems when once diagnosed with for example anxiety due to a traumatic event, one permanently retains that diagnosis, despite the transient nature of the event. Easy to note this from a
patient's medical file, and falsely conclude
they continue to have a mental health disorder.

Whatever happened to depression or anxiety being a logical reaction to a significant, but negative life event? The
death of a loved one. It is not illogical to
respond with sadness, depression, or maybe even anxiety. And yet, people are shamed for what is a logical reaction, and labeled with a mental health disorder.
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Ironically, this is a strong argument for mass misdiagnosis, which has been a consistent, and now verified, concern about the psychosocial model. It shows this approach is so unreliable you may as well flip a coin and get better results (since the rates seem to be above 50%, which would be pure chance). Doing worse than chance is NOT an argument for. Holy crap these people, the mediocrity and laziness are insufferable.
 
Michiel Tack said:
In a later survey by Action for ME there was little difference in the reported rate of harms by GET whether the treatment was delivered by a NHS specialist (31%), the GP (45%) or others (29%). In a 2015 survey of the ME Association, “GET courses held by therapists stated to have an ME/CFS specialism made symptoms worse for 57% of respondents.” To our knowledge, there is no data indicating that the reported harms of GET are due to inappropriate delivery of the treatment.
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rvallee said:
I would add the recent NICE survey as well. Can't really fault the source of the survey or its methodology here and it gave responses consistent with the other surveys, essentially confirming the reliability through independent validation. This isn't just patient associations, although their own surveys did turn out to have been reliable.
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I looked through the NICE survey and couldn't see any analyses just on those who had done GET under a specialist:

Appendix 3 – GET treatment participants
Was the GET treatment offered on the NHS or through the private medical sector?
GET Sector Number Percentage (%)
NHS 516 95.2
Private Medical Sector 23 4.2
*missing responses 3 0.6
Total 542 100
*Total = all those who were offered GET

Did you start the GET course? (*answer required)
GET started Number Percentage (%)
Yes 428 79
No 114 21
Total 542 100
*Total = all those who were offered GET

Appendix 5 – GET (combined with CBT)

Was the GET treatment offered on the NHS or through the private medical sector?
GET_both Sector Number Percentage (%)
NHS 889 94.3
Private Medical Sector 51 5.4
*missing responses 3 0.3
Total 943 100
*Total = all those who were offered GET (combined with CBT)
Did you start the GET course? (*answer required)
GET_both started Number Percentage (%)
Yes 707 75
No 236 25
Total 943 100
*Total = all those who were offered GET (combined with CBT)
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Dolphin said:
I looked through the NICE survey and couldn't see any analyses just on those who had done GET under a specialist:
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I'm not so sure that matters since in practice this cannot be validated. And it has been in practice for 12 years by now (17 in Australia, with similar outcomes). A treatment used in practice for this long should be judged based on how it's applied, not on ideal circumstances that some people wish existed. It's already a recommendation, in some cases an obligation, and there is no process to ensure anything, even from the "specialist" clinics themselves who basically have no standardization, quality control or evaluation, as the recent paper using FOIAs showed.

Plus there doesn't seem to be a difference from evaluations that did so the distinction is purely a distraction. It's not as if it's a sophisticated thing that requires years of experience and specialist training. "Do more each week, ignore symptoms", that's the whole of it right there. No point in pretending it's anything more than that.
 
Mithriel said:
I think we should start making a list of all the "conclusions" which include these sorts of words. I was as guilty as anyone of not noticing them but thanks to this forum they now stand out for me. It is quite astounding how much of the BPS facts have these qualifiers.
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Good idea @Mithriel. It would be interesting to see how many "belief" qualifiers are used in psych research. And yet, these researchers are accorded much respect in the medical community. This does appear so at any rate, as physicians readily refer patients for counseling etc.
 
Jonathan Edwards said:
I agree that it would be worth trying to research this a bit. I do not have the time just at the moment but might later.
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I had a quick look at reviews of exercise studies in various illnesses.

It seems that there are plenty of studies that did find improvements on objective outcomes. Reviews have reported decreases in hospitalization rates in patients with heart disease, reduced sick leave in low back pain, improvements in tidal volume in COPD and oxygen desaturation index in apnea, decreased insulin resistance in diabetes type 2, muscle power in power in patients with MS or spinal cord injury, neurocognitive function in Parkinson's disease and balance, mobility, and walking endurance in dementia. There is even a review that reported strong evidence that exercise improved key biomarkers in atherosclerosis such as TNF-a, IL-6, CRP, VEGF etc.

There are also reviews that report objective improvements in exercise capacity (often measured by VO2, muscle strength, 6 min walking tests etc.) in various illnesses such as renal disease, MS, fibromyalgia, breast cancer, schizophrenia, Down Syndrome, Angina, Prader Willie syndrome and probably many more. I didn't have the time/energy to check the reliability of the conclusions in these reviews. Many are based on approximately 10 studies, often small ones (much like the situation in ME/CFS) and with some inconsistent results. But even so, it's clear that there are some indications that in these diseases that exercise improves objective outcomes (unlike the situation in ME/CFS).

The fact that there are hardly any objective improvements in ME/CFS isn't normal. Peter White argued that deconditioning might explain ME/CFS symptoms and that it forms the rationale for GET. Regarding CBT, Wessely said that "the primary aim of treatment is to restore activity." So it shouldn't be too hard to find objective outcomes to test their theories and the effectiveness of their treatments. The data indicate that GET and CBT do not improve physical fitness or activity levels, and it's only afterward that they've argued these objective outcomes are unfit for purpose. I don't think there are any excuses. If exercise improves fitness in all these other diseases, but not ME/CFS - the illness they describe as characterized by kinesiophobia, exercise avoidance and deconditioning, then it should be clear to every honest observer that something is wrong with these assumptions or treatments.
 
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