Poll: Has graded exercise helped/harmed you?

[Nielk]

If you had experience with GET as a treatment please fill out the poll to reflect your experience. I am trying to collect information regarding GET for my CFSAC comment March 11th.

 

[Artstu]

I ticked 'I tried it and it made no difference' however I am a firm believer in exercise, but with an increase rate about 100 times slower than a GET programme.

 

[Bob]

@Nielk, are you aware of the existing polls that have been published? At least three have been published in the UK by patient organisations, and there are other international polls. @Tom Kindlon has also published a research paper on the issue of harms associated with GET, in which he collated the results from a number of international polls, and published the average rates of harm.

Let me know if you don't have any of this info, and I'll post it here for you.

 

[Dreambirdie]

Exercise, is helpful to me only when I am in recovery or remission. I have to limit it greatly when I am in a weakened state, and eliminate it completely when I am crashed.

 

[Purple]

@Nielk - what is the difference between the last two options? It is possible that both could apply if people are greatly harmed by GET.

 

[Nielk]

@Nielk, are you aware of the existing polls that have been published? At least three have been published in the UK by patient organisations, and there are other international polls. @Tom Kindlon has also published a research paper on the issue of harms associated with GET, in which he collated the results from a number of international polls, and published the average rates of harm.

Let me know if you don't have any of this info, and I'll post it here for you.

Yes, Bob - that would be very helpful if you can post it here. Thanks

 

[Nielk]

@Nielk - what is the difference between the last two options? It is possible that both could apply if people are greatly harmed by GET.

I think the difference is that the last one is more of a permanent damage. The difference between the two being that the first one feels a great decline but, after stopping GET, has had some recovery back to initial state. whereas the last one's experience has never come back to the state before GET.

 

[Purple]

Thank you.

 

[Bob]

Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Tom Kindlon
http://www.iacfsme.org/LinkClick.aspx?fileticket=Rd2tIJ0oHqk=&

See Table 2, on page 110, at the end of the document, for a pooled summary of results from nine surveys, and 4338 patients.
Results: Harm after GET = 51% of respondents.

And see Table 1 (page 105) for list of nine individual surveys, and results.



Here are some individual UK patient surveys (one of which is included in Tom's paper):

ME Association patient survey 2008:
http://www.meassociation.org.uk/wp-content/uploads/2010/09/2010-survey-report-lo-res10.pdf


Action for ME patient survey 2008:
http://www.actionforme.org.uk/get-i...ch-treatments-have-other-people-found-helpful

Action for ME patient survey 2010:
http://www.actionforme.org.uk/get-i...t-and-exercise-on-prescription-survey-results

 

[peggy-sue]

I ran 25 yards for a bus, once, quite early on in my illness. It put me in bed for 3 weeks, the longest I have been bed-bound.
No way would I contemplate GET, ever.

 

[Nielk]

Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Tom Kindlon
http://www.iacfsme.org/LinkClick.aspx?fileticket=Rd2tIJ0oHqk=&

See Table 2, on page 110, at the end of the document, for a pooled summary of results from nine surveys, and 4338 patients.
Results: Harm after GET = 51% of respondents.

And see Table 1 (page 105) for list of nine individual surveys, and results.



Here are some individual UK patient surveys (one of which is included in Tom's paper):

ME Association patient survey 2008:
http://www.meassociation.org.uk/wp-content/uploads/2010/09/2010-survey-report-lo-res10.pdf


Action for ME patient survey 2008:
http://www.actionforme.org.uk/get-i...ch-treatments-have-other-people-found-helpful

Action for ME patient survey 2010:
http://www.actionforme.org.uk/get-i...t-and-exercise-on-prescription-survey-results

Thank you Bob. This is very helpful. Compared to GET, pacing has been well tolerated with the best success rate. Why don't the government health agencies in all the countries recommend pacing as opposed to graded exercise for ME/CFS?

 

[peggy-sue]

Pacing works.
If I'd walked that 25 yards at my own speed, I would have been absolutely fine. It was, without a shadow of doubt, the fact that I was massively overexerting, trying to achieve aerobic metabolism, for under a minute, that did me in.
I can walk slowly, on a flat level for a good couple of hours, easily.
Sorry this isn't exactly what you're looking for, Neil. It's just anecdotal stuff that supports what you're looking for..

 

[Nielk]

With any other serious illness, would the official recommended treatment be one that has over a 51% chance of making the condition worse?

 

[Bob]

@Nielk, FYI, in the study, Kindlon concludes that harm data has been persistently under-reported in peer-reviewed research, but that the results of (international) patient surveys have been consistent.

 

[Firestormm]

A definition of graded exercise (therapy) would also be useful so as we are all singing from the same hymn sheet I think. Depends a great deal of the kind of actual programme you may have been involved in - and not everyone is or has been. 'Graded' seems to mean different things to different patients - and practitioners. And the levels of personalisation and understand of the disease also play a key role in determining usefulness.

 

[Min]

In the UK, graded exercise keeps being rehashed under a different name e, g. Adaptive pacing, graded activity therapy - a pile of manure by any other name is still a pile of manure

 

[snowathlete]

Of all treatments I have tried this one has had the most effect - entirely negative - from one single very mild session carried out exactly as it is supposed to be.
It's a sham of the worst kind and I regret trusting the cretins who prescribed it without researching it myself first.

 

[Bob]

A definition of graded exercise (therapy) would also be useful so as we are all singing from the same hymn sheet I think. Depends a great deal of the kind of actual programme you may have been involved in - and not everyone is or has been. 'Graded' seems to mean different things to different patients - and practitioners. And the levels of personalisation and understand of the disease also play a key role in determining usefulness.

My understanding is that GET for CFS was originally created for a patient group who were alleged to have a 'functional' (i.e. psychological) illness founded on symptom-focusing, maladaptive avoidance of exercise, and deconditioning etc. So, allegedly, there was no biomedical illness to treat, but it was simply maladaptive behaviour/cognition leading to exercise intolerance and deconditioning.

The theory behind the therapy was that patients were supposed to be introduced to exercise in a steady and progressive incremental fashion, and that fluctuating symptoms were to be ignored: If the therapist made allowances for fluctuating symptoms, then they would be complicit in, and encouraging, the patient's maladaptive behaviour, helping to validate the patients false illness beliefs and therefore the therapist would be helping to propagate the illness further. The therapist was not permitted to take into account the fluctuating nature of the symptoms. Awareness of symptoms was absolutely discouraged and fluctuating levels of symptoms were disregarded. Steady incremental increases in exercise were prescribed, regardless of symptoms.

But times have changed. I think that the UK's NICE guidelines now assert that sensitivity to fluctuating symptoms is good practice and to be encouraged. So, if GET is properly prescribed in the NHS in the UK, sensitivity to flare-ups and fluctuations is encouraged, and baselines/expectations are to be generously lowered whenever necessary or beneficial. So, these days, GET as prescribed by the NHS, should (if prescribed properly) incorporate strong elements of pacing.

However, I doubt if it is universally prescribed as it should be. Also, for many ME patients, GET simply isn't suitable. For example, when I first became ill, the very last thing that I needed in my first year, was to exercise in any shape or form, as I was extremely ill, and my symptoms were exceptionally reactive to any exertion. I literately only had to walk across the room, and my symptoms could flare up hideously. I was simply ill, and what I needed was to cease all activities, and to be inactive, while I got used to the illness. Only after I had learned to be inactive, could I start to think about increasing my extremely low levels of exertion.

The MEA and AfME patient surveys that I posted above are relatively recent (2008/2010), and I think they were carried out after the last NICE guidelines review. So, either GET is still having an adverse effect on some patients, or the harmed respondents participated in GET years ago.

 

[Nielk]

A definition of graded exercise (therapy) would also be useful so as we are all singing from the same hymn sheet I think. Depends a great deal of the kind of actual programme you may have been involved in - and not everyone is or has been. 'Graded' seems to mean different things to different patients - and practitioners. And the levels of personalisation and understand of the disease also play a key role in determining usefulness.

I agree with you Firesormm. I have not done too much research on this. I think that 'graded exercise' was intended for people who are suffering from deconditioning. This deconditioning could be due to many reasons including illness. For example if someone has been ill in bed for months and then recovered, they would be cautioned to do graded exercise where they slowly keep increasing the amount of activity until they gain back their previous selves. They would start slowly and as they regain their strength, they would keep increasing their activities.

They fact that this is recommended for all ME/CFS sufferers, seems outrageous. Would they recommend graded exercise for someone in the midst of a flu or for someone suffering from mono? They might suggest it once they have recovered from their illness.

The fact that they do recommend it just magnifies the fact that what they really think we are is - deconditioned. They also ignore the grave potential consequences due to post exertional malaise.

Pacing is what they should be recommending. One has to figure out how much activity they could safely do within their window without having to suffer a backlash of collapse.

 

[Bob]

Would they recommend graded exercise for someone in the midst of a flu or for someone suffering from mono? They might suggest it once they have recovered from their illness.

I totally agree with this sentiment. GET simply isn't suitable for someone who is in the midst of an acute illness, or in an acute phase of a chronic illness. There is probably a place for monitoring exercise levels in chronic conditions (i.e. pacing and regular activity where possible.) But I suspect that steady and progressive incremental increases in activity isn't suitable for most chronic illnesses.