Harmful Excercise

Please ask our experts about physical activity & exercise in relation to CFS/ME here.

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by goblinff on Fri Aug 16, 2013 8:19 am

Re: Harmful Excercise

Thanks for that Dr Miller.

If the aim of CBT & GET is to find a sustainable middle ground - which I think is what you've said, then - why doesn't APT (Adaptive Pacing Technique) also work the same? Doesn't it aim to do the same thing? That's what I don't understand about the PACE results - because the differences seemed pretty marginal to me?

Personally I'm not overly bothered by the minutiae of what has & hasn't been released yet, because as you say, it's not a 100% cure, it's the best we have so to me, at least, I'm reassured that properly applied CBT & GET shouldn't cause additional problems.

Though I am not at all convinced as to the availability of such properly applied CBT & GET - which for me is the elephant in the room - because that's the terrifying disconnect, the 'what if it's not properly applied' and 'how can I tell before it's too late and damages me' which I have a horrible feeling are the realities of what most ME/CFS people are likely to come up against. Do you or Jessica have any pointers as to HOW to tell whether or not what's being offered is the 'right' sort of CBT & GET?

*Edited to Add*: I've just gone back to another thread where Jessica suggested having a look at the PACE GET patient manual (there's also the therapist manual on that site) to see whether or not what's being offered is the same 'animal' as what the PACE Trial broadly found to be effective in some cases. But it's really really long and complicated to absorb. To qualify my question - are there any 'key features' that could summarise what a 'safe' GET programme looks like? and/or 'red flags' to look out for? *end edit*

This has added problems for those on benefits, because following 'medical advice' is part of the deal, but what if what's offered isn't 'safe' under the NICE Guidelines? Individual patients are unlikely to have the resources to deal with this?

*Edited to Add*: How can a patient who is offered GET (possibly as the only treatment available) that doesn't have the key features and/or has red flags negotiate it's application as per the PACE (or any other) 'safe' version, without jepordising their current/ future treatments & Benefits position? *end edit*

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by clareb35 on Fri Aug 16, 2013 12:44 pm

Re: Harmful Excercise

@Alastair Miller said:
"I agree that neither CBT nor GET are perfect and neither produce a cure in 100% which is clearly our goal."
Please can you provide us with the research evidence that CBT or GET have produced a (well-defined and lasting) cure in anyone with robustly-defined ME (as opposed to in anyone with another condition which gives rise to fatigue)?

If there was even a 50% chance of being cured of ME by these approaches, I (and no doubt many other people) would be beating a path to your door, cheque book in hand. But there isn't, is there?

Even the NICE guidelines agree that these approaches do not cure.

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by Laurellen on Fri Aug 16, 2013 2:33 pm

Re: Harmful Excercise

goblinff wrote: Personally I'm not overly bothered by the minutiae of what has & hasn't been released yet, because as you say, it's not a 100% cure, it's the best we have so to me, at least, I'm reassured that properly applied CBT & GET shouldn't cause additional problems.
It should be noted that the deterioration rates for the PACE trial have not yet been published. A FOI request for them was turned down as it was claimed that they were due for imminent publication, however they have yet to appear: https://www.whatdotheyknow.com/request/ ... ment-39303

The PACE trial also had unusually high levels of supervision, with sessions being recorded and assessed. If a similar approach were routinely taken within the NHS, I would expect this to lead to less harm being done to patients. It should not be assumed that, if the deterioration rates are published, they are representative of the results we see from routine specialist care in the NHS. We have also seen that data from CFS specialist centres practising in the community are different to data from the PACE trial. Outside of the unusual situation of an RCT, it seems that activity management leads to marginally better results than CBT and GET (although results for all were very poor for all, and were again comparable to what one might expect from alternative medicine/placebo): viewtopic.php?f=490&t=4601&p=13516#p13516

One can claim that 'properly' done surgery shouldn't cause additional problems - however there is always a risk that the surgery will not be 'properly' done, and the same is true with CBT and GET. It is easy to claim that all of the problems which have a occurred are a result of the treatments not being 'properly' applied, yet when those who have been improperly applying treatments have faced no disciplinary action, and the problems occurring seem routine and ongoing, it would be wrong to assume that this means that CBT and GET as applied by the NHS will not be harmful.

Which is not to say that they are not worth the risk for you. If you feel that the deconditioning or fear-avoidance models which underpin these interventions are likely to apply to you, then they could be a sensible idea.

For most CFS patients it seems that cautiously done GET is unlikely to cause long-term harm, and unlikely to be beneficial. It's important not to trust the exaggerated claims that are made by many of those who profit from GET for CFS, and make personal sacrifices in order to commit to a GET programme on the assumption that GET is likely to lead to recovery, but it's up to every patient to make their own decision about the relative costs and benefits of different interventions. I think that it is important that more data is made available to help people do this in an informed way, and it is sad that so many of those making money from CFS are keen to seen the information available to patients restricted and manipulated.

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by ChrisofCabra on Fri Aug 16, 2013 4:03 pm

Re: Harmful Excercise

Thank you, Dr Miller.
For something nicely measured to work with and from.
Dr Alastair Miller wrote: the people who make the best recovery from CFS/ME steer a compromise between over and under activity. People who fare badly either tend to drive themselves too hard and "crash" "
Could we add "or are driven" here? Yes, I've known those who unwisely tackle this condition by determination and frontal assault, but but I also know of those who managed this while "only obeying orders." against their own judgement (and pain and fatigue.)
...or they go to the other extreme and take to their beds to await recovery. Neither of these approaches is helpful and both delay recovery. .
I've not met so many of these, though there may be an obvious reason for that.
This is the principle behind GET and this approach ....
If only all GET was administered this way!
In practice, around the country I would suggest that there appear to be a number of quite different things attempting to share or claim the GET label, this leading to good GET and bad GET, dressed alike at first glance.
I'd hold this can be extended similarly to CBT, with some very different things, positive and negative, all sheltering under the umbrella of those three letters.

Yours, balancing between over- and under- activity,
and being rueful about the state my garden railway is getting into,


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