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Re: GET - useful or risky?

Posted: Thu Aug 15, 2013 5:38 pm
by goblinff
Thanks for that Jessica.

I'd already had a look at the PACE Trial documents - but it's over 100 pages long and a bit overwhelming and, as you recommend, I don't like the idea of having a go by myself. I did think about downloading the Adaptive Pacing Guide from the PACE website, but again it's over 100 pages long so I went back to the CBT Guide (same website) that I had from when I did the Trial (randomised to CBT), because it involved similar techniques and was familiar to me and used the AFME Pacing booklet alongside it (they share some techniques).

I think that's why I was given the currently out of print booklet, as a half way house for applying the main principles myself without causing harm.

For me personally, it was the fact that one has to be able to be sure the GET is being properly applied, to avoid harm, that made me shy away from it. Because expert patient or not, I do find it very difficult trying to second guess any treatment and whether it's being done properly, and the risks of getting it wrong and causing harm, as you state, are, in my view, high.

Re: GET - useful or risky?

Posted: Fri Aug 16, 2013 12:43 am
by Laurellen
Jessica Bavinton wrote:
This is the cause of the misunderstanding we are all reading about on this post, and why some people are opposed to it. People may have even been told they have received GET, or think that they are doing GET when in fact they are not. Therefore, knowledge is power: you can read this guide, and understand a bit more about the approach so you can identify for yourself if what you are doing or being offered is actually GET.
A lot of people, including myself, have also reported finding GET guidance from specialist NHS CFS centres to be unhelpful, and something which has wasted large amounts of time and effort. Given the results from the PACE trial, it seems likely that the key reason for patient dissatisfaction with GET is that it is not very useful, but that many of those making money from it regularly spin results in a way which leads to unduly high expectations.

While Jessica talks as if the GET given the patients by GPs is entirely unlike the GET that is being promoted as an evidence based intervention, it needs to be recognised that there has been no condemnation of the systematic way in which it has been promoted to patients. If it is really comparable to giving patients an entirely different and inappropriate medication, then one might expect some disciplinary action, or compensation for those harmed. I suspect that neither are likely to ever occur.

Given the nature of GET, it is easy to play the Goldilocks game, and pretend that the cause of problems is just that patients some times push too hard... and then sometimes not hard enough... they need to do the perfect amount! As no-one seems able to reliably identify what this is, the results from PACE were so poor, and the results we have from assessing CFS specialist centres operating in the UK even worse, perhaps patients would be better off spending their time not reading 100 pages of guidance for GET, but instead reading some poetry or a good novel. That seems more likely to be of value.

Re: GET - useful or risky?

Posted: Fri Aug 16, 2013 1:08 am
by redberries
One concern about GET that I haven't seen addressed in this thread is non-physical activity. GET purely focuses on physical activity, like walking, but ME patients can be adversely affected by cognitive activities too. I learned very quickly that I cannot read books for too long and need plenty of breaks when studying or I will get too ill to continue. I was on a pacing programme that slowly increased both physical and cognitive activities (along with rests), which did improve my health greatly. I have concerns that GET does not address the majority of activity an ME patient will do as the GET activity will be a few minutes a day compared to hours of everyday activities. However well controlled the physical activity is, the patient could still crash from overdoing it watching TV, holding a complicated conversation, video games etc.

Re: GET - useful or risky?

Posted: Fri Aug 16, 2013 5:17 am
by ithought
I replied to this last night but it appears the Internet ate my reply.

What I don't understand is why we believe that it's ok to prescribe a treatment programme that's proven to harm so many because of the possible improvements it has for some. It makes a mockery of the medical oath of 'do no harm'

Re: GET - useful or risky?

Posted: Fri Aug 16, 2013 6:12 pm
by laelowse
In response to admin's comment that we shouldn't try and answer each other's questions, could we perhaps have an expert contribution to address some of the issues raised here about the evidence base for GET (primarily I assume the PACE trial).

It seems rather simplistic to simply re-iterate the benefits when clearly there are risks that have not been discussed. I would be very interested in your opinion Jessica, and any other experts.

Redberries also raised an interesting point about mental exertion.

Many thanks.

Re: GET - useful or risky?

Posted: Fri Aug 16, 2013 6:21 pm
by Jessica Bavinton
Readers may find it helpful to understand the wide range of research evidence in that helps inform Graded Exercise Therapy for CFS/ME, along with its safety and effectiveness.

When looking into these concepts (and all treatments and theories), it’s important to understand the quality of the research published, the background of the study, and the scientific methodology behind it - as well as the numbers of people involved, how they were selected and any bias that might affect outcomes.

Once you start delving deeper, we often find that references supplied as 'evidence' and 'research' is not of sufficient rigour to draw any conclusions at all. Such conclusions can be inaccurate, and potentially harmful. Unfortunately, they can be presented so well and so credibly that it can be hard to tell 'good research' and 'bad research' apart. Understandably this is confusing for non-scientists, so I've included some articles that people might find helpful.

I will give you an example to consider: We shouldn’t trust research telling us the cure lies in eating lots of tomatoes if it’s sponsored by the tomato producers, had only 5 people participating, 3 drop-outs and wasn’t accepted by a credible publication. Before tomato producers get upset with me, that was just an example!!

1. Bagnall AM et al. A systematic review of interventions for the treatment and management of chronic fatigue syndrome and/or myalgic encephalomyelitis. http://www.york.ac.uk/inst/crd/cfs.htm 2001.
2. Department of Health (2002) A report of the CFS/ME Working Group http://www.dh.gov.uk/PublicationsAndSta ... chk=D8nces
3. Edmonds M, McGuire H, Price J. Exercise therapy for chronic fatigue syndrome. Cochrane Database Syst Rev. 2004(3):CD003200.
4. Fulcher KY & White PD. Randomised controlled trial of graded exercise in patients with the chronic fatigue syndrome. BMJ 1997;314:1647-52
5. Paul McCrone, Michael Sharpe, Trudie Chalder, Martin Knapp, Anthony L. Johnson, Kimberley A. Goldsmith ,Peter D. White (2012) Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and Specialist Medical Care for Chronic Fatigue Syndrome: A Cost-Effectiveness Analysis.
6. National Institute for Health and Clinical Excellence (2007) Chronic Fatigue Syndrome/ Myalgic Encephalomyalitis (or myalopathy): Diagnosis and management of Chronic Fatigue Syndrome/ Myalgic Encephalomyalitis (or myalopathy) in adults and children.
7. NHS Plus (2006) Occupational Aspects of the Management of Chronic Fatigue Syndrome: a National Guideline.
8. Powell P et al. A randomised controlled trial of patient education to encourage graded exercise in chronic fatigue syndrome. BMJ 2001;322:387-92.
9. Rona Moss-Morris, Cynthia Sharon, Roseanne Tobin, and James C. Baldi : A Randomized Controlled Graded Exercise Trial for Chronic Fatigue Syndrome: Outcomes and Mechanisms of Change Journal of Health Psychology 2005 10: 245-259
10. Royal Colleges. Chronic Fatigue Syndrome; Report of a joint working group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners. London, Royal College of Physicians, CR54, 1996.
11. Sandler H, Vernikos J. Inactivity: physiological effects. London: Academic Press, 1986.
12. Dalrymple W. Infectious mononucleosis: 2. Relation of bed rest and activity to prognosis. Postgrad Med 1961;35:345-349.
13. Shapiro CM et al. Fitness facilitates sleep. Eur J Appl Physiol 1984;53:1-4.
14. Wallman K, Morton A, Goodman C, et al. Randomised controlled trial of graded exercise therapy for chronic fatigue syndrome. Med J Australia 2004;180:444-8.
15. Wearden AJ et al. A randomised, doubleblind, placebo-controlled trial of fluoxetine and graded exercise for chronic fatigue syndrome. Br J Psychiatry 1998;172:485-90.
16. Prof PD White MD, KA Goldsmith MPH , AL Johnson PhD , L Potts MSc , R Walwyn MSc , JC DeCesare BSc HL Baber BSc ,M Burgess PhD , LV Clark PhD , DL Cox PhD , J Bavinton BSc BJ Angus MD , G Murphy MSc M Murphy FRCP H O'Dowd PhD j, D Wilks FRCP[Ed] Prof P McCrone PhD ,Prof T Chalder PhD, Prof M Sharpe MD (2011) Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial , The Lancet Volume 377, Issue 9768.
17. Whiting P, Bagnall A, Sowden A, Cornell J, Mulrow C, Ramirez G. Interventions for the treatment and management of chronic fatigue syndrome: a systematic review. JAMA 2001;286:1360-8.

Re: GET - useful or risky?

Posted: Fri Aug 16, 2013 6:28 pm
by Jessica Bavinton
I've been reflecting on how hard it must be for newcomers to all of this to get a balanced view, as people who have done well with exercise are unlikely to be on such a forum.

I know one thing people find hard is the lack of positive role models: people who have recovered, or are better than they were. People do recover from this condition, and most will get better with the right help. This is an important point.

Please find a link to an article describing the journey of two people, who were both severely affected at one time, and their experience with exercise:

http://www.csp.org.uk/frontline/article/making-grade

For those who are trying to weigh it all up, I hope this helps.

Re: GET - useful or risky?

Posted: Fri Aug 16, 2013 6:31 pm
by Jessica Bavinton
This link also shows support for the evidence gained during the PACE trial at the highest levels:

http://www.pacetrial.org/docs/Northover.pdf

Re: GET - useful or risky?

Posted: Fri Aug 16, 2013 6:34 pm
by Jessica Bavinton
Here is a small snippet that helps people understand a bit more about the PACE trial and what it showed:

"Both cognitive behaviour therapy (CBT) and graded exercise therapy (GET), when combined with specialist medical care (SMC), were more effective in reducing fatigue and improving physical functioning than adaptive pacing therapy (APT) when combined with SMC, and SMC alone. Approximately 12 out of 20 patients made a clinically useful reduction in fatigue and improvement in functioning with either CBT or GET compared to about 8 out of 20 with APT and 9 out of 20 with SMC. Twelve months after starting in the trial, 3 out of 10 participants were within normal population ranges for both fatigue and function, following CBT and GET, which were approximately twice as many participants than after APT and SMC. This means patients were more able to do things we all take for granted such as carrying shopping, or walking up a flight of stairs. This level of improvement is what we would expect in the treatment of other chronic disabling conditions. Being within the normal population range for these two outcomes does not necessarily mean the patient had recovered from CFS, so we are analysing separately the numbers of patients who recovered after treatment." www.pacetrial.org

There are some Frequently Asked Questions also on this site for people wanting to know more:
http://www.pacetrial.org/faq/faq2.html

Re: GET - useful or risky?

Posted: Fri Aug 16, 2013 6:40 pm
by Jessica Bavinton
This article will also help people understand a bit more about it all:

http://www.csp.org.uk/frontline/article ... ng-fatigue