It sounds like they're substantially deviating from NICE guidelines, by not using heart rate monitors routinely in GET. In fact, it sounds like they're trying to discourage it.
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Trial by Error, Continued: More on Graded Exercise from Peter White and The Lancet
- Thread starter Kati
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No date on the therapist manual, but it must have been published no earlier than 2016, because reference 7 at the end is to the GETSET trial 2016.
trishrhymes
Senior Member
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OMG. OMG. I nearly fell out of bed when I read that. Surely a case of medical negligence. How on earth did they get that past an ethics committee.
trishrhymes
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Interesting point, @Karen Kirke . Maybe David Tuller's point is that between 2009 when the manuals were written, and 2017 eight years on, they have had all the PACE saga. Thus by the time they wrote the paper they no longer believed their own deconditioning theory.
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Since Tuller doesn’t mention the manuals, but just discusses the paper, then taking his piece at face value, he seems to just be hopeful that by not stating their hypothesis explicitly in the GETSET paper as they did in the PACE paper, they might have changed their minds. Alternatively, this may be strategic on his part – he knows their hypothesis remains the same, but by asking the question, they may be encouraged to clarify, and that would likely lead to a lot of criticism. Tuller’s smart, I think he knows what he’s doing. I just wanted people to read the manuals!
I don't think there's anything about that sentence that suggests they are considering other causative factors:
“It is important to note that this trial was not designed to test causative factors in chronic fatigue syndrome, and the relative efficacy of a behavioural intervention does not imply that chronic fatigue syndrome is caused by psychological factors.”
That sentence can be truthfully said by someone who thinks that ME/CFS is caused by psychological factors. All it says is that a behavioural intervention being effective doesn’t tell you anything about the aetiology of a disease – which is true, exercise could theoretically be found in a trial to be effective in reducing symptoms in rheumatoid arthritis, but that wouldn’t suggest RA was psychological. And it’s true that the trial wasn’t designed to test causative factors – it was designed to test efficacy and safety of guided graded exercise self help. So it’s true, but it doesn’t mean any change in theoretical model/rationale/hypothesis.
There’s also a different first author – Lucy Clark – who may be keen to antagonise less, particularly since, as corresponding author, she will be receiving all feedback. When reading the GETSET paper I felt it was very clear that great care had been taken to attempt to address some potential criticisms before they could be made, and specifically to address some of those that PACE has encountered. Unfortunately it’s just as flawed as PACE, and may garner just as much criticism.
I think it’s just like telling the GES therapists “It is important that you show respect for your patient’s beliefs about the cause(s) of their illness and avoid challenging them as this may sometimes provoke strong emotion” (p.15 GETSET therapist manual). I'm not a fan of being managed. I think it is counterproductive long-term.
daisybell
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How, in this day and age, with the published research on metabolic issues in ME/CFS, can those researchers seriously put out this rubbish and sleep at night? The arrogance of believing that we are so psychologically flawed that they can tell health professionals to not listen to us - which goes against everything you learn when you're training. The self-righteous surety of their hypothesis - if they truly have no insight into the fact that they have caused potentially irreparable harm to numerous patients......words fail me.
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Sorry Trish, I meant to say that yes, I agree, that is a theoretical possibility. I just don't think we have any evidence to suggest it has happened. What I do think is possible is that people who have in the past promoted the deconditioning model might, over time, distance themselves from any theory and just go with the line that GET is effective (it's not) and safe (it's not) so we don't need to know why it works (it doesn't), we just need to roll it out everywhere for everyone. It's a very simple, appealing story, that can be sustained in the face of evidence that the original theoretical model does not hold up.
It all sounds like a DWP call centre worker's instructions, in fact.
https://theguardian.com/public-lead...ns-disability-claim-call-handler-benefits-dwp
"…the script specifies that I should not offer an explanation of the term unless I’m asked", etc.
Jonathan Edwards
"Gibberish"
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Up until this point in time I have taken the view that I would serve patients best by not taking an active 'interested' advocacy role but rather to emphasise the fact that I am an entirely disinterested party, prepared to give my opinion when asked. I think that was the right thing to do.
However, with the now crazy situation that Peter White and colleagues have had a paper published yet again by the Lancet, with exactly the same incompetent level of science, I think I am duty bound to take a more proactive approach.
There needs to be a voiced consensus from a range of senior medical academics in the U.K indicating that the Lancet has made an error of the same order as that which led to the Wakefield fiasco. I think I need to bring the problem to the attention of people with relevant expertise. Those in retirement may be the best to approach to avoid conflicts of interest.
However, with the now crazy situation that Peter White and colleagues have had a paper published yet again by the Lancet, with exactly the same incompetent level of science, I think I am duty bound to take a more proactive approach.
There needs to be a voiced consensus from a range of senior medical academics in the U.K indicating that the Lancet has made an error of the same order as that which led to the Wakefield fiasco. I think I need to bring the problem to the attention of people with relevant expertise. Those in retirement may be the best to approach to avoid conflicts of interest.
Kati
Patient in training
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Thank you @Jonathan Edwards. This might well be what's needed. This affects us all, all over the world.
NelliePledge
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Woah. I read this as you don't need to tell anyone about using a heart rate monitor but if they say they need one to exercise safely you can give this information out. So they leave the responsibility for safety entirely in the hands of patients who may not even know there is such a thing as using heart rate monitors or the risks of exercising when HR goes too high.
Utterly irresponsible and reprehensible
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And that right there, is what you do to treat a phobia. Graded exposure. "...avoided physical activities'
Graded Exposure Therapy is what we should call it.
They rarely put it into the 'normal' words in order to disguise their real theories, but anyone with experience of therapy for a phobia will recognize the theories and methods.
Why do they care so little for heart rates? Because when you have exposure therapy, the patient will probably be having a (hopefully) mild anxiety attack. The therapist will tell you it is nothing to worry about. You will be told that it is normal and is no threat to your health. You keep on being put in situations to challenge the anxiety until it finally leaves.
Why are they worried about parents behaviour/attitude in the MAGENTA trial? Because they think the children are using the parents as a 'superstitious object' that is holding them back. The parents are seen as possibly strengthening the child's confirmation bias that exercise will hurt them.
NelliePledge
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I have a vision of a whole crowd of ME people doing moonies to the PACE team.
And yet our perceptions are to be believed at the exclusion of all objective measures when it comes to primary outcomes! Surely if they believe our perceptions are unreliable they should be falling over backwards to make sure they only use objective measures.
If we exercise, it demonstrates that our perceptions have been fixed by those wonderful doctors, so they can be believed because they are demonstrably correct now. If we don't exercise, or continue to be ill, or get worse, it demonstrates that our perceptions are still skewed and delusional, so they cannot be considered objective or be relied upon.
Mind you, I've just realised that the only way to fix your skewed perceptions is to a) do what you're told, and b) reduce your symptoms. But this is virtually impossible, because doing what you're told is exercising, which will make your symptoms worse. So yes, GET is set up so that patient perceptions always end up classified as skewed.
This demonstrates the problems in trying to approach GET logically. You end up going round in circles and getting nowhere. You just have to believe it. Which is what they say ...
This demonstrates the problems in trying to approach GET logically. You end up going round in circles and getting nowhere. You just have to believe it. Which is what they say ...
A.B.
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The patient is cured when they confirm the false beliefs of the therapist.
Edit: on a more serious note, the therapists are also victims of the junk science produced by CBT/GET proponents. They've been told that ME/CFS is a state of mind rather than a physical illness and they must conform to the "evidence". They have not been told about all the evidence in favor of biological causation and don't understand that studies like the PACE trial are actually the best evidence against a psychological model of ME/CFS. Same for other healthcare personell. Therefore when patients seek treatment, unpleasant experiences are guaranteed for all involved.
Edit: on a more serious note, the therapists are also victims of the junk science produced by CBT/GET proponents. They've been told that ME/CFS is a state of mind rather than a physical illness and they must conform to the "evidence". They have not been told about all the evidence in favor of biological causation and don't understand that studies like the PACE trial are actually the best evidence against a psychological model of ME/CFS. Same for other healthcare personell. Therefore when patients seek treatment, unpleasant experiences are guaranteed for all involved.
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It might be sufficient to give them something they think they can sell, and something that various political interests think they can get away with buying. But most people need a story - they want to know who, what, where, when, why, and how. If they are merely told that something happens, but not why or how, they can't visualize it and don't trust the story.
This is why, having decided the cure must be CBT/GET, the quacks have filled in the "how" with theories of deconditioning and fear avoidance. This gives some other therapists something to grasp onto, that they can understand. Then they can feel confident enough to essentially torture their patient as instructed.
If there's no "how" or "why" for CBT/GET, we get into the realm of more blatant quackery. Then we might as well substitute CBT/GET for homeopathy, crystals, or placebo - it doesn't have to make sense, so it's all the same. We just need a few people to say they feel better. But most therapists are not going to go along with it without an explanation. They need at least a veneer of an explanation, even if it's baseless psychobabble which has never been more than a vague hypothesis.
This is why motive is an important part of every criminal case, even though it's almost never a required element of criminal laws. People need a story that they can make sense of. The psychobabblers will shoot themselves in the foot if they omit one, and they probably know that. But if they can't use deconditioning or fear avoidance, they have to invent a new story for presenting CBT/GET as the cure.
I think this is why central sensitization has been gaining popularity, as deconditioning has been disproven and fear avoidance falls flat, especially with patients who know damned well they aren't afraid or catastrophizing. It's even more vague than fear avoidance, it allows them to smile while telling patients of course they aren't deliberately causing their own symptoms ... but CBT/GET is still the cure for fixing that tricky brain.
Naturally this still relies upon ignoring nearly all biomedical research into ME/CFS, but they've been doing that for decades. And I think that forcing that biomedical research to be systematically acknowledged is the only thing that will force a change. The quacks will always invent a new pseudoscientific hypothesis as the previous ones are knocked down. The only thing that will stop them is a lack of funding, a lack of support from their institutions, and condemnation from their peers when they try to do it again.
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I'm always struck by the similarities of the arguments used to support GET and those of alternative medicine. The use of unblinded trials, subjective measurements, poor selection criteria and little long term follow up should be familiar to anyone who's attended a skeptics event or tried to debate homeopathy with a committed believer who'll drown you in a wash of 'scientific' papers that 'prove it works'. GET is similar - lots of poorly designed papers that demonstrate its 'effectiveness' but fails whenever checked against objective measures. I was reminded of this even more by the recent paper on how kineasophobia apparently predicted poorer outcomes for CBT/GET. That is precisely the argument a faith healer would make: if you didn't magically get out of your wheelchair and walk, it's because you didn't have faith.
Scientific journals would not accept these trial designs if they claimed to show the power of, say, crystal healing.
Personally I don't rule out the theory of central sensitisation - if that is defined as some kind of brain or nervous syndrome inflammation causing pain upon exertion such that the patient feels like serious damage is being inflicted even if the muscles themselves aren't being damaged by moving. Thing is, even if central sensitisation does explain the mechanism of ME/CFS in some patients, all the scientific evidence would show that GET still wouldn't be the cure.
I've often felt the BPS model of ME (or any disease it appropriates courtesy of its 'MUPS' paradigm) is akin to the circumlocution office in Little Dorrit.