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talkhealth forums • Proof that GET increases Activity Levels?
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Proof that GET increases Activity Levels?

Posted: Tue Aug 20, 2013 1:41 pm
by Valentijn
Thank you for answering my question about whether GET increases energy levels, Jessica. You said in another thread, which was locked before I could respond, that:
The incremental approach, which includes GET and CBT, have both been found to be effective in increasing activity levels.
Is there any source that supports this claim, or is it your clinical experience? I've tried to find something, but all I've seen are studies where CBT combined with GET resulted in lower scores on fatigue questionnaires, but no increase in objective activity levels as reported by actometer.

Re: Proof that GET increases Activity Levels?

Posted: Tue Aug 20, 2013 1:56 pm
by Jessica Bavinton
This may at least in part answer your question, posted by the principal investigators of the PACE trial:

"We found that both CBT and GET were more effective than both SMC alone and APT in improving fatigue and physical functioning, both reported by the patients themselves. About six out of ten patients made a clinically useful improvement in both fatigue and functioning after CBT or GET. CBT and GET were also more effective in improving: general ability to do things, global improvement in health, sleeping, post-exertional malaise."

The short answer is yes, both CBT and GET have been shown to improve physical functioning.

Re: Proof that GET increases Activity Levels?

Posted: Tue Aug 20, 2013 2:10 pm
by Jessica Bavinton
Clinical experience also very much supports that conclusion as well: someone I'm working with is just achieved their 5K run after starting their programme at a 5min walk... many people are currently returning to work, another still is walking her children to school for the first time in 2 years....I heard recently from someone who was severely affected who had just been on a dance holiday - the list goes on, this is supported very much clinically - these results are why I love my work and why I choose to work in this area.

If I didn't see people achieving new things and activity levels every day of my professional life, I would choose a different clinical area.

I support GET not 'because it's GET' - I support it because it's evidence-based, and also because I see it working and the very real difference it makes in people's lives.

Science is constantly evolving, as is the evidence base. GET isn't a 'miracle cure', and doesn't work for everyone - there is still much more to understand about this, and if there are any more effective treatments in future then I will support them, too. However, GET and CBT are the best we currently have and help most people to feel better and do more: a significant minority even recover after these programmes.

Re: Proof that GET increases Activity Levels?

Posted: Tue Aug 20, 2013 2:11 pm
by Valentijn
We found that both CBT and GET were more effective than both SMC alone and APT in improving fatigue and physical functioning, both reported by the patients themselves.
But never objectively in any studies, only on questionnaires?

Is there a reason to trust those questionnaire responses more than the actometer results from multiple trials?

Re: Proof that GET increases Activity Levels?

Posted: Tue Aug 20, 2013 2:14 pm
by Jessica Bavinton
There were a number of different objective measures used in the PACE trial - including a waking test, amongst others.... as well as subjective measures....

Re: Proof that GET increases Activity Levels?

Posted: Tue Aug 20, 2013 2:17 pm
by Valentijn
Jessica Bavinton wrote:There were a number of different objective measures used in the PACE trial - including a waking test, amongst others.... as well as subjective measures....
But from what I understand, none of those measures were used to determine "recovery" (which was defined to be nowhere near actual recovery), and most measurements showed no improvement (employment and benefits status), and the increase from GET on the walking test was minimal, with patients having an average distance still showing a high degree of disability?

Re: Proof that GET increases Activity Levels?

Posted: Tue Aug 20, 2013 3:22 pm
by Bluebottle
When will the deterioration rates from the PACE trial be published please?

Re: Proof that GET increases Activity Levels?

Posted: Tue Aug 20, 2013 4:11 pm
by Jon Denberry
Dear Jessica,
It must be very rewarding to see patients get better in clinical practice.
However, the PACE trial demonstrated that only up to an additional 15% of patients respond to CBT or GET when added to the SMC control group (for self-reported measures of fatigue or physical function.)
Whereas 58% to 65% of patients improved in the SMC (alone) control group for the same self-reported measures.
This high rate of improvement in the control group suggests that a high proportion of CFS/ME patients either respond to SMC or improve naturally over time.

Do you not think that this suggests that it is the treatment other than GET (that you are providing to your patients) that the vast majority of your patients are responding to, or that they are improving naturally over time when putting into place simple symptom management plans (such as avoiding boom and bust)? To me, the PACE trial results, indicate that this is the case.

The 60% figure which the PACE trial investigators have promoted on this forum, does not apply to the proportion of patients who responded to CBT or GET, but it applies to the proportion of participants who improved after SMC+CBT and SMC+GET. (The treatment plus the control intervention.) The SMC group was used as a control group, so it is not appropriate to include the improvements in the SMC group when interpreting the results of CBT/GET in the PACE trial. It is appropriate to report the additional number of patients who improved when CBT/GET were added to SMC, which was up to 15%.

Also, CBT and GET were found only to be 'moderately effective' for self-reported outcomes, and they were found not to improve actual (objectively measured) physical disability (six minute walk test) by a clinically useful amount. Also, CBT/GET did not improve employment or working hours. This again suggests that the dramatic improvements seen in your clinic are not the result of GET or CBT, but as a result of other factors. The evidence simply does not support the claim that CFS/ME patients will get back to work, or run 5 miles, as a direct result of treatment with CBT or GET.