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GET or Pacing?

Postby Dr Charles Shepherd on Sat Aug 17, 2013 9:40 am

Why is GET (graded exercise therapy) such a controversial management issue in ME/CFS?

As this online clinic forum is discussing activity management and exercise I would like to make a personal contribution

As a doc with longstanding personal experience of ME/CFS I have been involved in various aspects of research into muscle problems in ME/CFS - including donating samples of my own leg muscle for research. As a result, this was the first research, published in The Lancet, to demonstrate a clear abnormality in muscle energy dynamics during exercise (= early and excessive acidosis) in someone with ME/CFS

Lancet reference: http://www.ncbi.nlm.nih.gov/pubmed/6145831

So I am not convinced by the over-simplistic explanation that the exercise induced muscle fatigue that is so characteristic of this condition is always due to deconditioning. Neither is the research that is often quoted to support this model of exercise induced muscle fatigue very convincing.

I have made considerable progress over the years with activity management that is based on pacing - an approach that has consistently achieved extremely high approval rates from people with ME/CFS and which is recommended by all the major patient support charities

As a result I am now able to walk several miles, go swimming (even in Lake Windermere this summer!) and perform physically in a way that many people of my age do - even though the underlying illness continues

I have also tried a more structured approach based on graded exercise and not found it helpful.

The MEA receives constant feedback from people with ME/CFS who say they have been made worse (sometimes much worse) as a result of graded exercise programmes - sometimes because it appears that they have been applied in a very inflexible manner that takes no account of individual circumstances

Under the umbrella of ME/CFS is a complex multisystem disorder with a very wide range of clinical presentations and disease pathways

So activity management - balancing appropriate amounts of activity/exercise with approriate amounts of rest/relaxation - has to take account of the individual circumstances according to the stage and severity of illness as well as the type of clinical presentation

Results from the largest ever patient survey of all approaches to management, which was carried out by The MEA and involved over 4,000 respondents, found that in relation to GET (906 respondents):

3.4% greatly improved

18.7% improved

21.4% reported no change

23.4% reported that they felt slightly worse

33.1% reported they were much worse

With regard to pacing (2137 respondents):

11.6% reported great improvement

59.6% reported improvement

24.1% reported no change

3.5% were made slightly worse

1.2% were made much worse

So while some people under the ME/CFS umbrella, possibly those with chronic fatigue who are deconditioned, may benefit from graded exercise therapy there are others who clearly do not do so and are made worse as a result

This Is why I believe it is wrong to recommend GET as a 'one size fits all' treatment for everyone with mild to moderate ME/CFS - as is currently the case in the NICE guideline on ME/CFS. And this is why The MEA still believes that pacing is the most helpful form of activity management for most people with ME/CFS

The MEA Management Report can be downloaded free from The MEA website:

http://www.meassociation.org.uk/wp-cont ... o-res4.pdf

Research into muscle abnormalies in ME/CFS is summarised and referenced in section 5:3 (Muscle Studies - Research section) of the 2013 MEA purple booklet:

http://www.meassociation.org.uk/?p=4038
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association
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Re: GET or Pacing?

Postby Keela Too on Sat Aug 17, 2013 10:49 am

Thank you for this. I had read earlier responses from another medical expert that described Post Exertional Malaise (PEM) as a "perception" - and frankly that THAT perception is totally at odds with my experiences.

I too have found Pacing helpful - but even with very cautious pacing (and monitoring of my activities using a Fitbit) I have found that any increases, toward my existing glass ceiling, cause not only PEM 48 hrs later, and a setback lasting up to a week, but also an apparently permanent lowering of my glass ceiling. Thus to date, I have managed only to slowly deteriorate since onset 18 months ago.

Of course I want to do more - and have previously cautiously tried adding about 5% to my steps over a period of a month. Sadly this did not work, and I now am simply working to maintain the abilities I have by continued pacing measures - including reducing my activity at the very first sign of symptoms. This way I have slowed my rate of decline, and perhaps even stabilised my condition.

Thank you for being a voice of reason here Dr Shepherd. My personal experience indicates that people need to be very cautious with any form of increasing exercise programme.
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Re: GET or Pacing?

Postby reneMEFMS on Sat Aug 17, 2013 11:11 am

Thank you Dr Shepard

Why do those experts who are attached closely to the PACE trial give out their opinion as if they were solid facts and state that all who are diagnosed with ME CFS chronic fatigue syndrome chronic fatigue FMS will all improve with GET as long as it is their GET as was done in the PACE trial .Most other ME CFS specialists do not agree with these few but strangely all powerful in the UK

NICE only recommended it to help those who are mild to moderate and those in the PACE trial were very carefully selected Some of those closely involved with the PACE trial
The nurse led FINE trial failed miserably

ME CFS FMS are not caused by deconditioning and there are research papers and exercise challenges that can show this but these few specialist PACE backers do not ever mention this when they spout their opinions
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Re: GET or Pacing?

Postby reneMEFMS on Sat Aug 17, 2013 11:16 am

Also some Drs who were very closely involved in GET have stated that it is not even remotely curative so how come Dr Alister Miller thinks he can get to 100 percent cure figure :o
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Re: GET or Pacing?

Postby Valentijn on Sat Aug 17, 2013 11:17 am

Thank you so much for your information and efforts, Dr Shepherd.

It's very helpful and reassuring to see some of the actual data and to know that we're not alone in failing to improve with GET.

Something I've found extra perplexing lately, here and elsewhere, is that GET used to be pretty clearly about ignoring symptoms and slowly increasing the activity levels regardless. But now it seems to be getting more and more like pacing, to the extent that it might as well be called pacing! If so many people are reacting poorly to the older version of GET, getting it closer to pacing is certainly an improvement.

But what about GPs and specialist who only know that GET is a recommended treatment, and only heard about the old version, or assume that GET should is supposed to include increases in activity regardless of symptoms? Is there some way that they (and their patients) can get better educated about it? I'm afraid many doctors and therapists don't want to listen to patients, or even reputable research, especially when they have strongly-held preformed beliefs about ME/CFS and GET.

Conversely, this confusion can result in patients in saying they were harmed by GET and suggesting other patients avoid it, when the GET they experienced is a completely different treatment than is being recommended today.

And then things get even less comprehensible when looking at things like the PACE trial, when the GET described sounds more like pacing than the old GET, yet there was still a difference in results between pacing and GET groups. It's enough to make my head spin :lol:
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