Trial by Error, Continued: More on Graded Exercise from Peter White and The Lancet

[A.B.]

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.

The treatment for central sensitization is of course CBT (and probably GET). They have a product (CBT/GET), and by claiming that a thing such as central sensitization exists, they can create a market for this product. They also need to publish positive studies demonstrating efficacy but that's merely a formality with the kind of scientific standards they've adopted.

There are also a number of peripheral abnormalities that have been reported in patients (such as experiment with cell cultures showing abnormal metabolism) that seem to strongly contradict any models that attempt to reduce the illness to a central problem.

 

[sarah darwins]

And I think that forcing that biomedical research to be systematically acknowledged is the only thing that will force a change.

I feel that publicising why the Oxford criteria are junk would also help a lot. It's very clear that many in the therapy business don't understand that M.E. is not fatigue. They think "6 months of unexplained fatigue — I've had some good results addressing that with CBT and exercise so I know it works".

I curse the day Michael Sharpe et all published that pernicious, presumptive, self-serving, misleading pile of garbage.

 

[Chrisb]

I curse the day Michael Sharpe et all published that pernicious, presumptive, misleading junk.

I curse the day that they ever had the idea that they should.

 

[Valentijn]

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.

Sure it sounds plausible ... the same reason deconditioning and fear avoidance do, if we ignore all evidence, including the experience of ME patients. But the psychobabble version certainly would not include inflammation - just the misinterpretation of sensations.

Due to the vagueness in how it works, I couldn't even call it a hypothesis ... it's just random BS philosophizing about completely speculative processes. Hence it really should be rejected just as resoundingly as deconditioning and fear avoidance. Sure, it might exist in "some people" ... just like "some people" might actually be deconditioned catastrophizers. But there's no evidence for central sensitization driving the symptoms or disability in ME, and overwhelming evidence against it.

 

[Karen Kirke]

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.

Exactly!

It calls into question the reliability of the plethora of baseline questionnaires/scales used as outcome measures in the GETSET trial, all of which rely on ME/CFS patients’ perceptions: SF-36, Work and social adjustment scale, HADS depression scale, HADS anxiety scale, Patient Health Questionnaire-13 and International Physical Activity Questionnaire. Have their perceptions somehow been shown to be more reliable on those scales than on the RPE? If patients’ baseline perceptions are unreliable, then comparing them with their reliable post-exercise programme perceptions is not a valid way of ascertaining change, and GETSET results are meaningless.

If this looks familiar, it may be because I commented on it here:https://jcoynester.wordpress.com/20...ffer-from-the-illness-they-are-writing-about/

 

[Sean]

Graded Exposure Therapy is what we should call it.

Indeed. It is just a version of the generic exposure-desensitisation approach. Not even original.

 

[Snow Leopard]

Graded Exposure Therapy is what we should call it.

Yep. It's just another psychological therapy. There is zero understanding of exercise physiology demonstrated in the therapist or patient manuals.

 

[Londinium]

Sure it sounds plausible ... the same reason deconditioning and fear avoidance do, if we ignore all evidence, including the experience of ME patients. But the psychobabble version certainly would not include inflammation - just the misinterpretation of sensations.

Agreed, that was kind of my point but I don't think I expressed it well. Central sensitisation is a plausible theory worthy of investigation, if defined in the physiological sense of there being a stimulus to the nervous system caused, say, by an infection, that causes chronic biochemical/inflammatory changes to the nervous system. Such changes then cause inappropriate overreaction of the CNS even once the initial infection/stimuli is removed. I view central sensitisation as being a neuroinflammatory or other neurological potential cause of ME/CFS. The biopsychosocial crew define it differently: that we got ill, the illness disappeared, but we now suffer a psychological condition where we're such delicate flowers we can't do any exertion. For which the cure, of course, will be flog-them-harder GET.

IMHO, neuroinflammation or similar causing overreaction of the CNS to exertion stimuli - as opposed to problems occurring in muscle cells themselves - is a plausible hypothesis (though, FWIW, not the one I believe to be most likely). Whereas the psychological interpretation of central sensitisation and GET as a cure is, of course, nonsense.

 

[adreno]

Central sensitisation is a plausible theory worthy of investigation, if defined in the physiological sense of there being a stimulus to the nervous system caused, say, by an infection, that causes chronic biochemical/inflammatory changes to the nervous system.

But that isn't central sensitization theory.

 

[Barry53]

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?

It takes a special kind of person.

 

[Barry53]

The patient is cured when they confirm the false beliefs of the therapist.

I think we might be talking about the Inquisition here.

 

[TreePerson]

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.

Yes! Have had the same thought. And also re the current system of work capability assessments appeals tribunals awards reassements sanctions etc. On and on in a pointless expensive circle that wastes money and causes endless suffering. Dickensian in so many ways.

 

[TreePerson]

Agreed, that was kind of my point but I don't think I expressed it well. Central sensitisation is a plausible theory worthy of investigation, if defined in the physiological sense of there being a stimulus to the nervous system caused, say, by an infection, that causes chronic biochemical/inflammatory changes to the nervous system. Such changes then cause inappropriate overreaction of the CNS even once the initial infection/stimuli is removed. I view central sensitisation as being a neuroinflammatory or other neurological potential cause of ME/CFS. The biopsychosocial crew define it differently: that we got ill, the illness disappeared, but we now suffer a psychological condition where we're such delicate flowers we can't do any exertion. For which the cure, of course, will be flog-them-harder GET.

IMHO, neuroinflammation or similar causing overreaction of the CNS to exertion stimuli - as opposed to problems occurring in muscle cells themselves - is a plausible hypothesis (though, FWIW, not the one I believe to be most likely). Whereas the psychological interpretation of central sensitisation and GET as a cure is, of course, nonsense.

But people with severe ME end up with heart damage. I think it's pretty clear that damage can be caused by pushing on which would not be the case if it was just faulty reporting by the brain. The failings in the energy system may be centrally driven but I think the sensations that our bodies reports are entirely trustworthy. They say STOP! Bodies are intelligent they tell you things for a reason.

 

[IThinkImTurningJapanese]

Bodies are intelligent they tell you things for a reason.

Listen.

 

[thijs]

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.

The worst part about that graded exposure stuff is that the therapists are taught to reassure the patient, and to emphasize progress. Even if there is no progress (in case of GET).

So the therapist is constantly telling you things like: "that wasn't as bad as expected, was it?" "look how much you are doing already!"

Meanwhile you are sitting at the other side of the table like: