Does GET actually improve activity levels?

This clinic did not cover questions in regard to funding, research or complaints against the NHS. Such questions need to be addressed to the local GPC (General Practitioner Council). However as there was so much interest on these subjects we have left many of them under this heading for viewing but they are intentionally not answered by the panel.

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Valentijn
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Joined: Fri Aug 16, 2013 10:16 am
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by Valentijn on Sat Aug 17, 2013 3:02 pm

Does GET actually improve activity levels?

An expert here is saying that GET results in improvement. But I haven't read any studies showing any improvement at all in physical activity levels in patients undergoing GET. In fact, the studies using actometers (Wiborg, et al) show there is no increase in activity levels, even though patients say they feel better.

So I'm very confused about this - is there some research that I have missed out on, which supports the belief that GET results in greater functionality? Or is the perception of fatigue the only thing that matters when it comes to being treated with GET?

biophile.pr
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Joined: Fri Aug 16, 2013 9:20 am
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by biophile.pr on Sun Aug 18, 2013 2:44 am

Re: Does GET actually improve activity levels?

Good question, Valentijn. I previously posted a similar themed question(s) here at the "physical activity & exercise" section but without an answer it was soon closed and relegated to the "research & funding" section where threads are generally not answered (according to the description of that thread).

viewtopic.php?f=494&t=4696

Perhaps I should not have bothered to write a letter-esque post with multiple references, but it was providing solid background information in order to ask the following questions which are fundamentally important to patients and which the experts should be able to answer if they are confident in CBT/GET:

1) "So if CBT and GET on average do not actually increase total activity levels or increase engagement in other normal life activities, why is it still being promoted as doing so, and is this not encouraging false expectations about prognosis and the nature of improvements attributed to CBT/GET?"

2) "Is it therefore possible that the safety of these therapies depends not just on avoiding pushing too hard too fast i.e. so-called "boom-bust", but also on avoiding significant increases in total activity levels, because patients were generally correct about an activity ceiling hindering functional rehabilitation?"

When someone else asked why threads are being closed down so readily, the moderator answered:

"Threads are now being slowly closed once an expert has answered them and / or they have reached a natural conclusion. We normally don't close threads, but due to the large number of questions, we are closing topics to make it easier for the expert panel to identify which questions still may require attention."

viewtopic.php?f=451&t=4753#p13847

I understand that the experts may be busy and need more time, but I would prefer to think that the "natural conclusion" of being asked key questions about the claims and effects of CBT/GET on activity levels etc is not simply just ignoring the question or being unable to answer it at all.

taniaaust1
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Joined: Sun Aug 18, 2013 3:58 am
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by taniaaust1 on Sun Aug 18, 2013 5:42 am

Re: Does GET actually improve activity levels?

I too hope that Valentijins question gets answered as Im interested to know this too as all the studies Ive seen in this field were rather poor when properly looked at and were based on things like subjective findings rather then real things like people being able to get back to work etc.

Im looking forward in hearing about good studies which back up GET. I once went to a physio for an exercise program who I'd been told had some experience in ME/CFS. I'd just come out of a long term 9mth bedbound crash. I only went to the exercise physio once as the consequences of going to see her and doing what she said, left me crashed so bad I couldnt even eat my dinner with a fork (left me so weak that I was shaking just trying to bring a fork up to my mouth).

biophile.pr
Posts: 6
Joined: Fri Aug 16, 2013 9:20 am
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by biophile.pr on Sun Aug 18, 2013 9:17 am

Re: Does GET actually improve activity levels?

I and many other patients have undergone numerous failed attempts at graded increases in activity. We have been sold a therapy which is framed as successfully rehabilitating many patients back to normal health and function. Numerous anecdotes of null or adverse effects have promoted many individuals to have a closer look at the evidence-base being used to support these claims. I previously outlined the evidence which strongly suggests that CBT/GET does not lead to increases in total activity levels.

Is there convincing evidence which we are simply somehow not aware of? I have not been able to find it after years of searching. Please help me and other patients find a way to the evidence if it exists.

Sense about Science have started an "Ask for evidence" campaign:

http://www.senseaboutscience.org/pages/a4e.html
Evidence matters in many of the decisions we make - as patients, consumers, voters and citizens. If you want to know whether a claim made in a policy, newspaper article, advert or product is backed by scientific evidence, ask the people making the claim to provide it.
So here we are asking in sincerity and for the concern of patients everywhere, where is the evidence that CBT/GET increase total activity levels as commonly presumed? This lays at the heart of the controversy, not the fear of stigma surrounding mental illness, nor the supposed naive Cartesian dualism, et cetera.

Sense about Science apparently can offer help if adequate answers are not provided:

http://www.senseaboutscience.org/pages/ ... an_do.html
You don’t need to be a scientist to ask for evidence. Anyone can pick up the phone or send an email asking for evidence behind any claim. But if you need more help, Sense About Science has hundreds of organisations and 5,000 scientists standing by. We can help you with your response and publicise it. It might become a rallying point for others who have been frustrated by the same claim. Where we are constantly fire-fighting on a particular issue, we work with scientists and members of the public to draw out the underlying assumptions and to address misconceptions.

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