Correspondence on exercise in the Journal of Rehabilitation Medicine

Dolphin

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Correspendence is in press on this issue from:

Tom Kindlon & Ellen Goudsmit -
Graded exercise for Chronic Fatigue Syndrome: Too soon to dismiss reports of adverse reactions

Replies from
Lucy Clark & Peter White
&
Jo Nijs, Lorna Paul and and Karen Wallman

What follows are links to the earlier article and correspondence:

--------

Chronic fatigue syndrome: an approach combining self-management with graded exercise to avoid exacerbations.

Nijs J, Paul L, Wallman K.

J Rehabil Med. 2008 Apr;40(4):241-7.

Division of Musculoskeletal Physiotherapy, Department of Health Care Sciences, University College Antwerp, Vrije Universiteit Brussel, Belgium. j.nijs@ha.be


Controversy regarding the aetiology and treatment of patients with chronic fatigue syndrome continues among the medical professions. The Cochrane Collaboration advises practitioners to implement graded exercise therapy for patients with chronic fatigue syndrome using cognitive behavioural principles. Conversely, there is evidence that exercise can exacerbate symptoms in chronic fatigue syndrome, if too-vigorous exercise/activity promotes immune dysfunction, which in turn increases symptoms. When designing and implementing an exercise programme for chronic fatigue syndrome it is important to be aware of both of these seemingly opposing viewpoints in order to deliver a programme with no detrimental effects on the pathophysiology of the condition. Using evidence from both the biological and clinical sciences, this paper explains that graded exercise therapy for people with chronic fatigue syndrome can be undertaken safely with no detrimental effects on the immune system. Exercise programmes should be designed to cater for individual physical capabilities and should take into account the fluctuating nature of symptoms. In line with cognitive behaviourally and graded exercise-based strategies, self-management for people with chronic fatigue syndrome involves encouraging patients to pace their activities and respect their physical and mental limitations, with the ultimate aim of improving their everyday functioning.

PMID: 18382818 [PubMed - indexed for MEDLINE]
Full text is available for free at:
http://jrm.medicaljournals.se/article/pdf/10.2340/16501977-0185
(I find this an odd article - the authors switch from say good things to bad things to good things throughout it, IMHO).
 

Sunday

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Arrrrrgh.

Sorry I don't have anything more intelligent to say. Wish they would GET CFS/ME for awhile and see how great exercise makes them feel. Is the second writer citing the studies where they didn't provide a check box for "made worse", so there wasn't any possibility of the study turning up the wrong answer for them?
 

Dolphin

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Is the second writer citing the studies where they didn't provide a check box for "made worse", so there wasn't any possibility of the study turning up the wrong answer for them?
Not sure about this.

Clark and White do cite the 2001 study. I don't know how the 2003 study disproves the 2001 survey - doing GET under a professional wasn't associated with a better outcome in the 2003 survey. I think White is hoping people won't look up the 2003 survey:

Survey 5: (UK) Action for ME (2003)

Action for ME in 2003 wanted to follow up on its previous survey to see whether changes were occurring with regards to members’ experiences of treatments. It restricted responses to treatments received over the previous three years so that the results would not overlap with a previous survey. 550 patients were sent a questionnaire, “your experiences”, with 354 people responding (a response rate of 64%).

List of results for people who did GET broken down by the practitioner:

Under a physio:
Negative 12 (67%) Neutral 0 (0%) Positive 6 (33%)

Under an Ot:
Negative 6 (100%) Neutral 0 (0%) Positive 0 (0%)

Under a Doctor:
Negative 3 (27%) Neutral 1 (9%) Positive 7 (64%)

Under a Behavioural Therapist:
Negative 1 (25%) Neutral 1 (25%) Positive 2 (50%)

Gym:
Negative 3 (100%) Neutral 0 (0%) Positive 0 (0%)

No Professional:
Negative 1 (8.33%) Neutral 4 (33%) Positive 7 (58%)
With regard to this group the authors of the report say: "Had NO professional input (had they therefore paced themselves ?) - mostly with positive outcomes"

If one combines
Under a physio + Under an OT + Under a doctor + Under a behavioural therapist, to get a figure for under a professional:
Negative 22 (56.41%) Neutral 2 (5.13%) Positive 15 (38.46%)

So those who did GET under a professional had much higher rates of adverse reactions.
(from: http://sacfs.asn.au/news/2009/09/09_20_adverse_reactions_to_get.htm )

---
2001 survey data:
Survey 1: (UK) Action for ME (2001)

In the UK, the Chief Medical Officer (CMO) (i.e. a government job somewhat similar to the position of Surgeon General in the US) set up in 1999 a working group to report on the area of “CFS/ME”.

Amongst other things, when they reported in 2002, the report included the following data from a survey.

Therapy* Respondents Helpful No change Made worse
Drug medication for pain 1394 61% 28% 11%
Drug medication for sleep 1300 67% 17% 16%
Pacing your activities 2180 89% 9% 1%
Graded exercise 1214 34% 15% 50%
Diet changes 1864 65% 32% 3%
Nutritional supplements 1953 61% 36% 3%
Rest, including bed rest 2162 91% 8% 1%
Cognitive Behavioural Therapy 285 7% 67% 26%
Other 878 76% 11% 14%

*Not all the respondents experienced each treatment approach (Action for ME Membership Survey, 2001. 2338 respondents in total)

This data was then included in the Full NICE Guidance on CFS/ME (Page 95 of 317):

Therapy Helpful No change Made worse
Drug medication for pain 61% 28% 11%
Drug medication for sleep 67% 17% 16%
Pacing your activities 89% 9% 2%
Graded exercise 34% 16% 50%
Diet changes 65% 32% 3%
Nutritional supplements 62% 36% 3%
Rest, including bed rest 91% 8% 1%
Cognitive Behavioural Therapy 7% 67% 26%
Other 75% 11% 14%

[Aside: there are three changes by 1% (in italics) from the figures given in the CMO Report - these are on “occasions” when the first numbers did not add to 100% but with the changes, the numbers all added to 100%. Somebody presumably thought they need to be changed. Due to rounding, the numbers do not need to add to 100% to be accurate, so I believe the first set of figures should be considered the most accurate data]

As one can see, Graded Exercise Therapy had a terrible safety profile in this data – 50% of 1214 people reported being made worse – that’s the equivalent of 607 reports of adverse reactions! CBT had the second worst safety profile with 26% reporting being made worse by it. But this was for a smaller number of patients (285) than GET, so is equivalent to 74 reports of adverse reactions.

Pacing and rest (including bed rest) had both the highest rates of people reporting they were helpful (89% and 91%) and also the lowest rates of adverse reactions – just 1% for each (note: as I say, the first set of data appears to be the most accurate one with the second data having being adjusted to add to 100%).
More survey results at:
http://sacfs.asn.au/news/2009/09/09_20_adverse_reactions_to_get.htm
 

Dolphin

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Links to all the letters (all now free)

(i) The following article was published in April 2008:

Chronic fatigue syndrome: an approach combining self-management with graded exercise to avoid exacerbations.
Nijs J, Paul L, Wallman K.
J Rehabil Med. 2008 Apr;40(4):241-7.PMID: 18382818 [PubMed - indexed for MEDLINE]

Abstract:

Controversy regarding the aetiology and treatment of patients with chronic fatigue syndrome continues among the medical professions. The Cochrane Collaboration advises practitioners to implement graded exercise therapy for patients with chronic fatigue syndrome using cognitive behavioural principles. Conversely, there is evidence that exercise can exacerbate symptoms in chronic fatigue syndrome, if too-vigorous exercise/activity promotes immune dysfunction, which in turn increases symptoms. When designing and implementing an exercise programme for chronic fatigue syndrome it is important to be aware of both of these seemingly opposing viewpoints in order to deliver a programme with no detrimental effects on the pathophysiology of the condition. Using evidence from both the biological and clinical sciences, this paper explains that graded exercise therapy for people with chronic fatigue syndrome can be undertaken safely with no detrimental effects on the immune system. Exercise programmes should be designed to cater for individual physical capabilities and should take into account the fluctuating nature of symptoms. In line with cognitive behaviourally and graded exercise-based strategies, self-management for people with chronic fatigue syndrome involves encouraging patients to pace their activities and respect their physical and mental limitations, with the ultimate aim of improving their everyday functioning.

Free full text at:
http://jrm.medicaljournals.se/article/pdf/10.2340/16501977-0185

---------------

(ii) Lucy Clark and Peter White co-wrote a reply to which the authors
replied:

Chronic fatigue syndrome.

Clark LV, White PD.

J Rehabil Med. 2008 Nov;40(10):882-3; author reply* 883-5. No abstract available.
PMID: 19242631 [PubMed - indexed for MEDLINE]

*Response by: Jo Nijs, Lorna Paul, Karen Wallman

Full free text at:
http://jrm.medicaljournals.se/article/pdf/10.2340/16501977-0261
and
http://jrm.medicaljournals.se/article/abstract/10.2340/16501977-0261

------------

(iii) Ellen Goudsmit and Tom Kindlon wrote a response to this correspondence, to which the other two groups replied:

Graded exercise for Chronic Fatigue Syndrome: Too soon to dismiss reports of
adverse reactions
Kindlon T, Goudsmit EM

J Rehabil Med. 2010 Feb;42(2):184-6
DOI: 10.2340/16501977-0493

Full free text at:
http://jrm.medicaljournals.se/article/pdf/10.2340/16501977-0493
 

gracenote

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Thank you tomk.

It was very interesting and enlightening reading the paper and the responses to the paper. Thanks for keeping on top of this and for sharing it all with us.
 

Dolphin

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Thank you tomk.

It was very interesting and enlightening reading the paper and the responses to the paper. Thanks for keeping on top of this and for sharing it all with us.
Thanks gracenote - well done on reading all that.
I found the first paper a bit of a curates egg some good bits but then theyd go back to suggesting exercise was the answer. And Ive no confidence in their exercise program.

However, it was the Clark/White response that was what I felt needed a reply.
It really shows how hardline White is that he would challenge the initial Nijs paper.
And I think it is a disgrace that he (White) didnt mention his own paper (which was published in the Journal of CFS which is not PubMed-listed so most people wouldnt notice his omission).
 
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I'll never forget the day when my son Blake collapsed at a state finals track meet in the 800 meter run. He finished his race third, ran over to a shady tree (it was HOT) and collapsed. He was clutching his heart and complaining of a severe headache, he had vomited as he ran in the race; yet he kept running for his "team". He finished that race\, which was his last track meet. During the 5+ long years and 20+ doctors it took to diagnose Blake with CFIDS.....he was put through many tests. One of these tests was with a Cardiologist. It was "the Treadmill test". Blake passed with flying colors (muscle memory & sheer Willpower), then proceeded to be bedridden for 2 months. As far as the Cardiologist was concerned, nothing was wrong with Blakes' Cardio system. As far as I was concerned, as we traveled the 400 miles back home and Blake was clutching his heart....something was drastically wrong with his cardio system. I live on a Horse Farm....and I know Horse Crap when I see it. This exercise theory is pure horse crap. I am an athlete (swimmer,competitive horses,race car driving) and I know what is going on with my body. I've trained extensively in sports as has my son. We know our bodies and we intuitively know our limits with this CFIDS illness. I'd rather be in a pool swimming laps anyday, than a couch potatoe. How dare someone theorize that my son ought to exercise according to a "plan" and risk a heart attack. According to some Leading CFIDS Specialists, they do NOT ADVISE EXERCISE until viral load is diminished and the central nervous system is safely restored. Studies are underway as to cardio involvement. I am not happy with this exercise theory and methodology. Julia....http://vlgonvalcyte.wordpress.com/
 

Dolphin

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I'll never forget the day when my son Blake collapsed at a state finals track meet in the 800 meter run. He finished his race third, ran over to a shady tree (it was HOT) and collapsed. He was clutching his heart and complaining of a severe headache, he had vomited as he ran in the race; yet he kept running for his "team". He finished that race\, which was his last track meet. During the 5+ long years and 20+ doctors it took to diagnose Blake with CFIDS.....he was put through many tests. One of these tests was with a Cardiologist. It was "the Treadmill test". Blake passed with flying colors (muscle memory & sheer Willpower), then proceeded to be bedridden for 2 months. As far as the Cardiologist was concerned, nothing was wrong with Blakes' Cardio system. As far as I was concerned, as we traveled the 400 miles back home and Blake was clutching his heart....something was drastically wrong with his cardio system. I live on a Horse Farm....and I know Horse Crap when I see it. This exercise theory is pure horse crap. I am an athlete (swimmer,competitive horses,race car driving) and I know what is going on with my body. I've trained extensively in sports as has my son. We know our bodies and we intuitively know our limits with this CFIDS illness. I'd rather be in a pool swimming laps anyday, than a couch potatoe. How dare someone theorize that my son ought to exercise according to a "plan" and risk a heart attack. According to some Leading CFIDS Specialists, they do NOT ADVISE EXERCISE until viral load is diminished and the central nervous system is safely restored. Studies are underway as to cardio involvement. I am not happy with this exercise theory and methodology. Julia....http://vlgonvalcyte.wordpress.com/
I agree with you Julia Rachel and understand your passion. I come from a mathematical background and tend to try to avoid expressing emotion in writing but I was so annoyed by Peter Whites letter that it drove me to spend quite a lot of time on the letter during my summer vacation.

If one follows the link in my .sig, you can see the sorts of things he wants to deny patients because he believe all patients need is a Graded Exercise Therapy program to get back to normal.
 

Mithriel

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My son was suffering from fatigue and headaches. (It turned out to be coeliac disease which no one tested him for despite him having the very large clue that he was anaemic, very unusual for a twenty three year old! He was only diagnosed when his sister, also anaemic, saw a doctor who had had a flat mate with coeliac disease was found to have it.)

Anyway, he was referred to a neurologist who said he should exercise more since exercise cures fatigue.

At the time he was working 12 hour shifts in a factory, had a three month old baby and was spending weekends fixing up a flat for his family. No one ever bothers to ask how much we do.

I had ME for seventeen years before CFS was invented. Suddenly they spoke about fatigue, which I had never associated with my illness, and deconditioning. I had three young children and spent my day walking from playgroup to school, to the shops, to my mother's. I walked instead of taking a bus because I got ill if I stood, I used a walking stick because of vertigo (it told me which way was upright) and by nine at night I was blind and needed help to walk.

I was very sick, but I had more exercise in a day than the average desk worker.

Mithriel