physical activity & exercise

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GET - useful or risky?

Postby laelowse on Wed Aug 14, 2013 9:59 am

Hi,
I have been suffering from ME/CFS for over 3 years now and would describe my condition as stable and moderate - I am unable to work and my activity is limited, but I am not bed-bound and am able to potter around the house doing small tasks and have the odd trip out providing I pace carefully.

I have been considering Graded Exercise Therapy as a means of increasing my energy envelope but have heard very mixed views regarding efficacy and safety, which leaves me confused. I am scared to embark on something like this in case it makes me worse - which to my mind seems likely given any activity increases symptoms. But on the other hand I feel like I should be doing something to help my body and muscles given how inactive I've been for so long.

I would really appreciate some advice on this and how I could get started with minimal risk of relapse.
Thanks.
laelowse
 
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Re: GET - useful or risky?

Postby Jessica Bavinton on Wed Aug 14, 2013 11:14 am

Dear laelowse

Thank you for your post as it reflects questions and concerns that many people have about Graded Exercise Therapy.

Sometimes people are concerned by what they have read online, or by someone else affected by their condition: people perhaps saying ‘exercise made me worse’, for example. Then, on the other hand you have the NHS promoting GET, and GET being supported by NICE guidelines and research. Very confusing. So what’s going on?

Fundamentally we are talking about two different things (This is a huge misunderstanding out there: a case of ‘Apples’ and ‘Pears’):
1) A Graded Exercise Therapy (GET) Programme for CFS/ME (Apple)
2) A ‘General Exercise Programme’ (Pear)

These are two totally different concepts and programmes, and have totally different results.

Therefore, it is quite right that people might say ‘exercise made me worse’, because at the wrong ‘dose’, ‘exercise’ probably will. However, it’s also right that people would say ‘Graded Exercise Therapy made me better’ as this is now strongly supported by research.


The main confusion comes when people inaccurately describe a ‘General Exercise Programme’ as ‘Graded Exercise Therapy’ when in fact it isn’t.


This is helpfully summarised by the NICE Guidelines for CFS/ME:
“Strategies that should not be used for CFS/ME [1.4.6]
The following strategies should not be offered to people with CFS/ME:
• Advice to undertake unsupervised, or unstructured, vigorous exercise (such as simply ‘go to the gym’ or ‘exercise more’) because this may worsen symptoms.” (p241)
….In other words: ‘A General Exercise Programme’ (our ‘Pear’, above)

What IS recommended is defined as follows:
“6.3.1.2 Graded exercise therapy (GET)
1) GET is an evidence-based professionally mediated approach to CFS/ME involving appropriate physical assessment, mutually negotiated and meaningful goal-setting and education. An achievable baseline of physical activity is agreed, followed by individually tailored and planned increases in the duration of exercise. This is followed in turn by an increase in intensity when the patient is able, taking into account their preferences and objectives, current activity patterns, sleep, setbacks/relapses and other factors, with the objective of improving symptoms and functioning.” (p190)
…. In other words: A Graded Exercise Therapy (GET) Programme for CFS/ME (our ‘Apple’).

Two things should help reassure you:
1) Nothing gets recommended by NICE unless it is both effective and safe
2) The PACE research trial, which explored GET (and other treatments) in great depth, also found GET to be effective and safe. Nothing gets published in The Lancet unless it’s very rigorous and checked out thoroughly.

So, as long as you are actually doing Graded Exercise Therapy, and not a General Exercise Programme, then you can be confident that you are on the right lines.

If you’d like to understand more about what GET actually is, and how it’s defined, then I’d recommend having a look at the NICE Guidelines for CFS/ME.

http://www.nice.org.uk/nicemedia/live/1 ... /36191.pdf

The following pages are useful:
• GET Definition: p190
• GET Programme Details: p246-247
• Strategies that should not be used: p241

PACE Research Trial – Article (Lancet publication):
http://www.thelancet.com/journals/lance ... 2/fulltext

I hope this helps answer your question, and helps you come to some conclusions about the way forward.

All the best.
Jessica Bavinton
Specialist Physiotherapist
BSc (Hons) Physiotherapy, MCSP, PVRA, HG (Dip), MBACME
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Re: GET - useful or risky?

Postby goblinff on Wed Aug 14, 2013 11:21 am

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?
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Re: GET - useful or risky?

Postby laelowse on Wed Aug 14, 2013 11:47 am

Hi Jessica,
Many thanks for your reply. I appreciate the difference between a structured programme for people with ME/CFS and just random over-exertion, but I was referring to people who have undertaken a supervised programme (as per NICE guidelines) which has had a negative impact on their long term health. This remains a concern for me, but I'm coming to the conclusion that the evidence in support probably outweighs this.

Could you advise how I would get started please? GP referral?
laelowse
 
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Re: GET - useful or risky?

Postby Jessica Bavinton on Wed Aug 14, 2013 11:58 am

Thanks laelowse

I agree, the evidence in favour of GET significantly outweighs any anecdotal evidence against. What's important is that the programme is delivered according the NICE guidelines and PACE protocol.

I'd suggest looking up BACME:
http://www.bacme.info/localservices/

Find your nearest NHS service, and then go to your GP and ask to be referred to it. Not all services are able to provide GET: some may not have a physio, or may not be able to offer you one-to-one interventions: therefore you might like to give them a call and see what they provide and whether they offer GET programmes as described by the resources previously supplied.

Good luck!
Jessica Bavinton
Specialist Physiotherapist
BSc (Hons) Physiotherapy, MCSP, PVRA, HG (Dip), MBACME
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Re: GET - useful or risky?

Postby onlyme2013 on Wed Aug 14, 2013 1:13 pm

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?
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Re: GET - useful or risky?

Postby Sustainably Yours on Wed Aug 14, 2013 3:58 pm

Graded Exercise Therapy (GET);

My daily amount of physical movement and activity varies, and if I do have to use my brain to work things out, like cooking, traveling arrangements, at work etc, then I need to reduce my physical activity to be able to do these things well and safely .

All of us with CFS/ME are very vulnerable, we want a cure desperately. The truth is that we can get better, we can learn to manage our disease, to improve physical and mental strength and activity to varying degrees over our lifetimes (40 years for me to date), but most of all, we want to know the risks of programmes said to be helpful, and manage this terrible chronic condition with our full consent, our control, and our understanding of our symptoms and the disease. .
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Re: GET - useful or risky?

Postby onrecovery on Wed Aug 14, 2013 4:12 pm

The only experience I've had of Graded Exercise Therapy was a friend of mine that under took it. Even though she spoke up at times with regards to her concerns about the programme, she was assured to keep with it. She ended up crashing. I think this type of therapy may be of use, but I do not think the levels of increase are realistic for the sufferer.

I've comprised my own GET. I started out doing a 2 minute walk once a week. Did that for a month, and then in the second month I added a second day in. Then the third month a third day. By the 7th month I was able to walk for 2 minutes every day. I then increased the walk by 2 minutes, firstly on 1 day a week. Then added in another day every subsequent week. I continued adding in 2 minutes in this format. I'm now walking 16 minutes every day, and have had no adverse effects.

From what I've heard GET through the NHS is not broken down into small enough increases.

Just my view anyway !
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Re: GET - useful or risky?

Postby Janancee on Wed Aug 14, 2013 4:17 pm

Dear laelowse

Many people who have taken part in structured “Graded Exercise Therapy” (GET) supervised by a “suitably qualified” therapist according to the NICE guidelines, have reported that they have been made permanently worse. Because of the controversy surrounding this approach a large clinical trial was carried out to assess the efficacy of not only GET but also Cognitive behavioural therapy (CBT). This is the PACE Trial to which Ms Bavington refers:
“2) The PACE research trial, which explored GET (and other treatments) in great depth, also found GET to be effective and safe.”
This trial has been widely criticised. Many people have submitted complaints about the flawed methodology used. Contrary to what has been widely reported, the trial did not demonstrate any significant benefit with GET. The very small improvement noted could be explained by a placebo effect – even the lead researcher Professor Michael Sharpe is on record as saying “ What this trial isn’t able to answer is how much better are these treatments than really not having any treatment at all”, while Professor Peter White, the chief investigator has stated that ...the PACE Trial was not studying CFS/ME, but people with fatigue as their main symptom...
Because the trial investigators kept “moving the goalposts” it was possible to take part in the trial, deteriorate yet still fall within a modified definition of “normal range”. These people were then described as recovered!
However, perhaps the most pertinent point to make is that the published data from the PACE trial does not include information relating to the number of people who were made worse by the trial’s interventions. This information has been repeatedly asked for and the trial investigators have refused to provide it – instead hiding behind a long list of excuses.
Further information about the PACE Trial can be found here.
https://www.facebook.com/notes/me-matte ... 2593412124
Last edited by admin on Wed Aug 14, 2013 5:09 pm, edited 1 time in total.
Reason: Direct and unsubstantiated criticism of an expert on the clinic panel has been removed - see forum rules.
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Re: GET - useful or risky?

Postby laelowse on Wed Aug 14, 2013 4:25 pm

Thanks everyone for your input, really interesting to hear the other side of the argument. Makes it very difficult to know what to do for best.

Jessica, how would you respond to these criticisms of GET and the PACE trial?
laelowse
 
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