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Re: GET - useful or risky?

Posted: Thu Aug 15, 2013 11:37 am
by Jessica Bavinton
goblinff wrote:I was on the PACE trial at Kings, on CBT. But it didn't really work for me, so per the Trial terms, they offered me Pacing instead, but didn't have the staff, so we talked about GET but I was too scared to try it.
They did send me a booklet on Graded Exercise, published by the NHS and written partly by a greek named lady, but I can't find it.
Do you know if there's a copy online? or where I could get one from?
Because the AFME has a booklet on Pacing but no-one seems to have one on GET, and I know it exists/ existed?

Hello goblinff

I've checked it out for you, and the GET guide you are referring to isn't available at the moment, but I'd suggest you take a look at the following GET Manual instead:

http://www.pacetrial.org/docs/get-parti ... manual.pdf

This is useful also for anyone trying to understand more about what GET should actually look like, and should help you to tease out the differences between a evidence-based programme that is effective for most people, and a 'General Exercise Programme', which is NOT evidence-based and has the potential to cause problems.

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.

However, please be aware that it is not intended that you undertake this programme by yourself, without professional guidance from someone trained in both GET and CFS. This is also one cause for the 'negative feedback' : A self-directed exercise programme is NOT GET.

This is why I'd recommend that you talk to your GP and see if you can get a referral back to Kings where you can see a highly trained physiotherapist, face-to-face, who can guide you through step by step.

When done according to this guidance, GET is a very, very gentle process - with you at the centre of the decision-making.

Re: GET - useful or risky?

Posted: Thu Aug 15, 2013 11:49 am
by Jessica Bavinton
onlyme2013 wrote:Hi Jessica, I hope you won't mind me asking a question as this thread seems to cover a lot of the questions I have in relation to activity and my child.
We are on a GET program for him but he is relapsing every few weeks after continuous increased activity (which is prescribed on the GET program), this is a continuous pattern over a year. I feel he does better when we pace him (ie allow him to rest and recover) and wondered if you would offer any advice as to whether the GET program should be continued if it seems to make him worse?

Dear onlyme2013

Thanks for your question. A few ideas that might help:

1) Work with your therapist to understand why he is having a setback every few weeks: there are lots of possible reasons, so it's important to understand what could be the cause.

2) If symptoms are ongoingly increasing, this is not the time to increase exercise or physical activity: it will be useful to reduce or stabilise his exercise if the cause of the increase is thought to be down to increasing exercise too quickly

3) A GET programme should involve stabilising at a level before increasing again, and is not about 'ongoingly increasing regardless'

4) A GET programme will cause a manageable, explainable and mild increase in symptoms as you step up to the next level: this is normal, and reduces as you stabilise. Once stabilised, this is time to take another small increment (increments are very small,about 20% eg 5mins to 6mins walk)

5) Ongoing worsening should be discussed with your therapist to understand what's happening and to make decisions together about whether to stabilise or reduce the exercise.

You can use the guide posted above to find out more about what a GET programme should look like.

All the best

Re: GET - useful or risky?

Posted: Thu Aug 15, 2013 12:37 pm
by onlyme2013
Hi Jessica, the reason for each setback every few weeks is the increased activity. If we stop the activity he doesn't relapse. However, the focus is purely on "getting him back into school" and the school are focusing purely on the GET program and asking why he's not back full-time yet.
I've asked for a letter stating that ME is a fluctuating, potentially long-term illness, and due to this we cannot stick to any program of reintegration (to school) but the doctors will not give me one. They just state that we need to keep pushing on.
We are definitely on a GET program as I have letters stating this.
Also, my son's blood results show inflammation and infection: how is GET helping this when there is no medical intervention whatsoever?

Thank you.

Re: GET - useful or risky?

Posted: Thu Aug 15, 2013 1:28 pm
by UKNW2013
My friend has ME and he was referred by his GP to an NHS specialist ME clinic. He was seen by a GET therapist and although he was apprehensive about undertaking exercise he was guided in a very graded way. He started with a very small walking duration 2 minutes and over the course of treatment which took about 9 months was able to walk 20minutes. He was never forced to increase and sometimes he would tell me he was on a stabilization week so was not allowed to increase that week. He is continuing to slowly improve and told me that he never thought he would achieve what he has. He is very grateful for his treatment.

Re: GET - useful or risky?

Posted: Thu Aug 15, 2013 2:15 pm
by Janancee
Dear “UKNW2013”
I am glad to hear about your friend’s progress. The difficulty here however is that it is impossible to say whether he would have still gradually improved to this extent without undergoing GET. This is the issue that the PACE Trial was trying to resolve. What the trial showed was that although the patients allocated to the GET group increased the distance they could walk - so did the group who did not undergo GET but simply received general medical care. The difference between the two groups was negligible. The fact is that many people with ME can stabilise and improve over time, although it is very rare to return to previous levels of normal functioning.
The question that remains unanswered by the trial is whether some people are harmed and made worse by the GET approach. This information has still not been released in spite of several requests. A poll carried out by the ME Association of members who had taken part in graded exercise therapy found that 20% said they had improved while 17% said they were made worse. 63% recorded “no change”.

Re: GET - useful or risky?

Posted: Thu Aug 15, 2013 2:22 pm
by onlyme2013
Janancee, your post is very interesting to me. I feel that GET is making my son worse.
I know Jessica mentioned 'stabilising' at activity levels but he only stabilises when we stop GET and then it takes weeks/months for him to recover enough to re-start; then he crashes again after no more than two weeks on GET and so on. My concern is not knowing what damage we might be doing to a physically ill child with this process.

Re: GET - useful or risky?

Posted: Thu Aug 15, 2013 3:05 pm
by Janancee
Dear "onlyme2013"
It must be an absolute nightmare for you, wading through all the conflicting information to try to find how best you can help your child. Personally, as someone who has had ME for several years, and spends a great deal of time researching information about the illness, I would be very reluctant to engage with the GET regime. There is an excellent charity - "The Tymes Trust" which offers help and advice to parents of children with ME. I have reservations about the other main children's charity, "The Association of Young People with ME". There is also a very good doctor who has a great deal of experience of ME in children, a retired paediatrician, Dr Nigel Speight. He also acts as paediatric medical advisor to the ME Association. Unfortunately I don't have any contact details for him, but I have found this article he's authored: http://voicesfromtheshadowsfilm.co.uk/n ... e-handout/

Re: GET - useful or risky?

Posted: Thu Aug 15, 2013 3:19 pm
by onlyme2013
Janancee I cant thank you enough. It's very kind of everyone on here to offer their advice.

Re: GET - useful or risky?

Posted: Thu Aug 15, 2013 3:41 pm
by Bluebottle
http://iacfsme.org/BULLETINFALL2011/Fal ... fault.aspx



Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis

ABSTRACT



Across different medical fields, authors have placed a greater emphasis on the reporting of efficacy measures than harms in randomised controlled trials (RCTs), particularly of nonpharmacologic interventions. To rectify this situation, the Consolidated Standards of Reporting Trials (CONSORT) group and other researchers have issued guidance to improve the reporting of harms. Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) based on increasing activity levels are often recommended for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). However, exercise-related physiological abnormalities have been documented in recent studies and high rates of adverse reactions to exercise have been recorded in a number of patient surveys. Fifty-one percent of survey respondents (range 28-82%, n=4338, 8 surveys) reported that GET worsened their health while 20% of respondents (range 7-38%, n=1808, 5 surveys) reported similar results for CBT.

Using the CONSORT guidelines as a starting point, this paper identifies problems with the reporting of harms in previous RCTs and suggests potential strategies for improvement in the future. Issues involving the heterogeneity of subjects and interventions, tracking of adverse events, trial participants’ compliance to therapies, and measurement of harms using patient-oriented and objective outcome measures are discussed. The recently published PACE (Pacing, graded activity, and cognitive behaviour therapy: a randomised evaluation) trial which explicitly aimed to assess “safety”, as well as effectiveness, is also analysed in detail. Healthcare professionals, researchers and patients need high quality data on harms to appropriately assess the risks versus benefits of CBT and GET.

Re: GET - useful or risky?

Posted: Thu Aug 15, 2013 5:31 pm
by admin
My we remind you not to answer each other's questions but to wait for the experts to answer.