Tom Kindlon
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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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And I imagine that patients that dropped out were not included as there would only be "before" data in that case..
The 6 minute walk test is a pretty useless test for ME patients.
I bet they don't record the effect over the next few days on the patients who push themselves to walk further.
...
And, as others have pointed out, where are the figures for how many dropped out before this stage or were unwilling or unable to do the walk again, having had a set back after the first one?
I think the most interesting outcome of this FOI request is that they have admitted they don't do any of the other testing suggested by the person who asked for the data. Nothing that would show whether there is actually any real change in the patient's functioning.
They persist in making sure they only get meaningless results. That has to be deliberate, and is highly irresponsible.
I think we need to be careful not to make inappropriate criticisms based on this release of information - a comment not necessarily directed at @trishrhymes.
The numbers are small and perhaps incomplete (nothing about dropouts) simply because this is what was asked for (documented changes - other baselines were not asked for) This was not a study as I understand it. It is just release of clinical information. I suspect that it was authorised by a helpful clinician who may be as sceptical about exercise therapy as any of us. We should not expect any placebo effect or massaging of data here because we have no indication that these are data designed to prove a point. They are just logs of clinical progress. They might be overoptimistic or over pessimistic. This is probably the only test used because the NHS is grossly overstretched and there is no justification for doing anything more - or even this. For individual treatments measuring the benefit is not necessary. If there was improvement then the patient will know. Presumably this is an attempt at some sort of audit for internal purposes. That might include wishful thinking but maybe the clinician is noting the modest nature of the improvement and wondering how they can find something better. Nobody managing ME/CFS at UCLH that I know of is under any illusion that exercise cures it. They are keen to find something that works.
If we are going to criticise PACE for being uninterpretable then surely we should accept that these data are even more completely uninterpretable - either way - as indicators of treatment efficacy. Those who live in orchards should not cherry pick!!
Yes, that would be my general line of thought too, @trishrhymes. Maybe someone checking this thread is under UCLH and could take feedback to the physicians. The ones I know would be interested. I guess the problem with actometers is that you have to have a budget and a form to fill in to order them and then find out where they have been misdelivered to when you have eventually got approval to buy them and then they keep getting lost and the cupboard where they are kept is thrown out and ... all the usual things that happen in an NHS department. Exactly as they do in my daughter's maths department at the school where she teaches. But sometimes you can find a way that works!
I think there is subtle pressure to use cheap tests, and the 6mwt is exactly that. However actometers are reusable and require minimal supervision of patients. So I think a cost benefit case could easily be made to use them.
If they were tracking the data to use it to make changes, they probably would have abandoned CBT/GET after the first few years of failuresThat might include wishful thinking but maybe the clinician is noting the modest nature of the improvement and wondering how they can find something better.
I guess you never worked in public services, Alex? The pressure is not subtle, it is like a scrap metal compressor. You might think you could buy things but if you have no budget for anything not on a list, you can't. If you have no office, as is the norm now, there is nowhere even to store equipment. Physio staff come and go by the week so within a couple of months nobody will know where the actometers are.
I guess you never worked in public services, Alex? The pressure is not subtle, it is like a scrap metal compressor. You might think you could buy things but if you have no budget for anything not on a list, you can't. If you have no office, as is the norm now, there is nowhere even to store equipment. Physio staff come and go by the week so within a couple of months nobody will know where the actometers are.