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

I see that the group includes the co-director of Australian Cochrane and various professors of physiotherapy and GPs. It looks to me very much like a group wedded to the pervasive propaganda that GP is good because it is cheap and cheerful with no nasty drugs. The UK RCGP seems to take the same approach. Jack of All Trades and proud of it.

 

At least they are politically correct. Whatever happened to the "cap"?

 

Terrific response, @Michiel Tack! You’re so quick!

 

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.

 

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.

 

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.

 

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.

 

Perhaps @dave30th nows some references as well. I remember reading this 2015 article by you: "Renewed Prescriptions For An Old Remedy: Physical Activity."

 

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.

 

And that's why the Cochrane review surviving is unfortunate.

 

"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.

 

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.

 

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.

 

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.

 

I looked through the NICE survey and couldn't see any analyses just on those who had done GET under a specialist:

 

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.

 

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.

 

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.

 

It all comes down to the fact that they say we have a genuine disease but what they actually think is that we are just whiny complainers who won't even try.

 

They are basing this on the Cochrane review - so if the review changes, then so must this commentary...