physical activity & exercise

Moderator: talkhealth

Harmful Excercise

Postby Cherrypie on Wed Aug 14, 2013 4:58 pm

I wonder why on earth you would think in CFS that doing more excercise would help? It causes pain and exhaustion as you would expect in someone who is sick and has joint and muscle pains already. No more research should be done into GET, instead proper research into the cause should be done.
Cherrypie
 
Posts: 3
Joined: Wed Aug 14, 2013 4:48 pm

Re: Harmful Excercise

Postby Bluebottle on Wed Aug 14, 2013 4:59 pm

Documented pathology seen in ME/CFS that contra-indicates the use of Graded Exercise Therapy
Last edited by admin on Thu Aug 15, 2013 9:41 am, edited 2 times in total.
Reason: URL's removed
Bluebottle
 
Posts: 36
Joined: Fri Aug 02, 2013 2:36 pm

Re: Harmful Excercise

Postby Jessica Bavinton on Wed Aug 14, 2013 5:28 pm

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
Jessica Bavinton
Specialist Physiotherapist
BSc (Hons) Physiotherapy, MCSP, PVRA, HG (Dip), MBACME
User avatar
Jessica Bavinton
 
Posts: 40
Joined: Wed Aug 07, 2013 9:14 am

Re: Harmful Excercise

Postby onlyme2013 on Wed Aug 14, 2013 6:25 pm

My son is definitely on a Graded Exercise Program and he relapses every few weeks. Are you suggesting that this is the correct outcome and we are to continue in this way?
onlyme2013
 
Posts: 21
Joined: Sun Aug 11, 2013 3:58 pm

Re: Harmful Excercise

Postby Laurellen on Wed Aug 14, 2013 7:13 pm

Jessica Bavinton wrote: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?


As this post is almost identical to one from another thread, I think that my unanswered response is equally relevant here. It is important that patients have access to accurate information, and deleting only comments presenting one viewpoint will serve to distort the discussion, and could serve to further mislead patients.


One problem is that the evidence available in this area is so very poor, and often presented in confusing ways by those whose careers depend upon the promotion of GET as an effective treatment.

It is all very well to talk about the importance of following the PACE protocols for treatment, but the PACE researchers showed very little interest in following their own protocol [1] for how to present their results in a meaningful manner.

In their protocol's criteria for recovery, patients were required to have an SF36-PF score (using a questionnaire used to measure disability) of 85 or over. A score of 75 or over was required for a patient to be classed as having had a 'positive result', and a score of 65 or under was used as part of the criteria for severe fatigue and disability which required treatment [1]. Now that they have to release their results, they are claiming that a score of just 60 indicates a patient has a 'normal' level of disability, and can be considered recovered [2,3].

Initially, the move to a score of just 60 was justified by the claim that this represented the mean - 1 standard deviation of scores for the working age population. It has now been recognised by even the PACE researchers that this is false. More recently, they have tried to justify the change in their recovery criteria from requiring a score of 85 or more, to one that required a score of just 60 or more by claiming that nearly half of the working age population has a score of under 85. If one examines the data cited, this is also clearly false [4], although the PACE researchers have yet to admit this publicly.

If this were not already worrying enough, some have gone further. The chair of BACME, Esther Crawley, was the corresponding author on a paper which claimed that PACE showed "cognitive behavioural therapy and graded exercise therapy indicated a recovery rate of 30-40% one year after treatment" [5]. Even when using the new and drastically weakened criteria for recovery, the reported recovery rates were actually only 7% for SMC, 22% for SMC + GET, and 22% for SMC + CBT; so CBT and GET could only be said to lead to an additional 15% of patients recovering, even by the low standards of the PACE researchers [3]. Given the danger of response bias for those patients who are being encourage to believe that they have more control over their symptoms, and then trying to fill in questionnaires more positively (and the fact that PACE showed CBT and GET leading to no improvements for numbers of patients on incapacity benefits, or able to work) it is quite possible that despite all the time and effort patients put in to CBT and GET programmes, they led to no real improvements in health, despite the dramatic claims being made by some researchers and clinicians.

Currently, those involved with PACE are refusing to allow patients access to the data on the outcome measures laid out in their own protocol, making it harder for those with CFS to make informed decisions about their own treatment [6]. Hopefully we are slowly moving towards a point when this is not seen as acceptable, and researchers will be forced to make public even data which is inconvenient to them and their claims of expertise.

Given the poor quality of much of the research in this area, and the history of inaccurate and potentially misleading claims coming from those who promote GET, I would suggest that patient anecdotes and polling are the most reliable measures of outcome we have, deeply flawed as they are.

I would encourage anyone with CFS to try to look very carefully at the available evidence, rather than just trusting those who claim to be experts.

[1] PACE protocol: http://www.biomedcentral.com/1471-2377/7/6

[2] Initial PACE paper: http://www.thelancet.com/journals/lance ... 2/fulltext

[3] PACE paper on recovery: http://www.meassociation.org.uk/wp-cont ... _Jan13.pdf

[4] Paper on SF36 PF population norms cited by PACE: http://jpubhealth.oxfordjournals.org/co ... 3/255.long

[5] Paper which claims 30-40% recovery rate: http://www.biomedcentral.com/1472-6963/11/217

[6]: FOI request for outcome measures laid out in PACE trial's protocol: https://www.whatdotheyknow.com/request/ ... tes_and_po
Laurellen
 
Posts: 18
Joined: Wed Aug 14, 2013 3:25 pm

Re: Harmful Excercise

Postby Janancee on Thu Aug 15, 2013 2:29 pm

[quote="Jessica Bavinton"]
"However, it’s also right that people would say ‘Graded Exercise Therapy made me better’ as this is now strongly supported by research....

....The PACE research trial, which explored GET (and other treatments) in great depth, also found GET to be effective and safe".

The basic principle that is underpinning the argument in favour of graded exercise is that GET is an evidence based treatment. This “evidence” refers to the results of the PACE Trial.
The PACE trial has been widely discredited. It did not show that GET was an effective therapy for people with M.E. Therefore there is no evidence base.
This distinction that is being made between properly supervised and carefully administered GET as opposed to a general exercise regime is simply a diversion from the real issue.
None of the criticisms of the PACE trial have been addressed by those that still insist on referring to it as evidence that GET is beneficial.
The Pace trial investigators are refusing to release information from the trial showing the number of patients made worse by GET. 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”.
Janancee
 
Posts: 8
Joined: Wed Aug 14, 2013 10:38 am

Re: Harmful Excercise

Postby arisonsned on Thu Aug 15, 2013 4:09 pm

Basically you can just draw a line through everything you have been told by "fatigue clinics" and the charities that are supposed to be helping us. As soon as Invest in ME gets its rituximab trial off the ground and get's some results - only then can we rely on the advice given because it will be about ME not fatigue. I'm not surprised to see action for me or ayme on here.
arisonsned
 
Posts: 2
Joined: Thu Aug 15, 2013 4:04 pm

Re: Harmful Excercise

Postby cags2015 on Thu Aug 15, 2013 5:31 pm

[quote="Jessica Bavinton"]
"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."

Not sure I'm feeling very re-assured with that statement. NICE have previously recommended treatments that have subsequently been shown to be harmful to some patients - Avandia is one such treatment that was recommended as an effective treatment and is now the subject of lawsuits due to the harm it has caused, so things do get recommended and then the guidelines changed when it is shown that effectiveness and safety are not what was previously thought. The ME/CFS guidelines should have been reviewed this year, which should have provided the opportunity for evidence to be presented by other researchers and patient groups to highlight the harmful effects of GET on patients with ME (as opposed to a general fatiguing illness).

Also, to use the Lancet as the Gold standard is possibly misguided, since Andrew Wakefield's very contentious paper was published in the Lancet and supposedly went through the 'very rigorous' review and was thoroughly checked out before ceremoniously being trashed by the editorial team when the proverbial hit the fan.

I have no doubt that a well put together exercise programme could be beneficial for some people with ME at very specific points in their illness and in those cases may help to improve function. However, the vast majority of people with ME and their carers recognise that trying to increase exercise and activity beyond the body's capability at that time, however grandual the increase may be, will invariably result in a relapse, which often leaves the patient with a reduced baseline and in a worse state of health.
cags2015
 
Posts: 7
Joined: Thu Jul 11, 2013 10:23 am

Re: Harmful Excercise

Postby Dr Alastair Miller on Thu Aug 15, 2013 9:34 pm

The principle of GET is based on the fact that the people who make the best recovery from CFS/ME steer a compromise between over and under activity. People who fare badly either tend to drive themselves too hard and "crash" as is well described by several contributors or they go to the other extreme and take to their beds to await recovery. Neither of these approaches is helpful and both delay recovery. This was the common experience of most of us involved with ME/CFS patients over the years. The people who do best steer that middle course and push themselves a bit but not too much. This is the principle behind GET and this approach which many of us had used for years (even before NICE and PACE). PACE gave us reassurance that we are doing the right thing.

I agree that neither CBT nor GET are perfect and neither produce a cure in 100% which is clearly our goal.

The fact remains that however imperfect they are, there is NO alternative therapy that is known or shown to be beneficial so they are all we have. Yes we should continue to support research to define the biomedical mechanism underlying ME/CFS but at present the NHS centres are providing the only therapy that is evidence based and known to be of benefit. It may not benefit everyone but currently we have nothing else and current data suggests that people are continuing to improve and benefit from these approaches.
Dr Alastair Miller
MA FRCP FRCP (Edin) DTM&H AHEA
User avatar
Dr Alastair Miller
 
Posts: 36
Joined: Wed Aug 07, 2013 11:24 am

Re: Harmful Excercise

Postby Laurellen on Thu Aug 15, 2013 10:21 pm

Dr Alastair Miller wrote:The principle of GET is based on the fact that the people who make the best recovery from CFS/ME steer a compromise between over and under activity. People who fare badly either tend to drive themselves too hard and "crash" as is well described by several contributors or they go to the other extreme and take to their beds to await recovery. Neither of these approaches is helpful and both delay recovery. This was the common experience of most of us involved with ME/CFS patients over the years. The people who do best steer that middle course and push themselves a bit but not too much. This is the principle behind GET and this approach which many of us had used for years (even before NICE and PACE). PACE gave us reassurance that we are doing the right thing.

I agree that neither CBT nor GET are perfect and neither produce a cure in 100% which is clearly our goal.

The fact remains that however imperfect they are, there is NO alternative therapy that is known or shown to be beneficial so they are all we have. Yes we should continue to support research to define the biomedical mechanism underlying ME/CFS but at present the NHS centres are providing the only therapy that is evidence based and known to be of benefit. It may not benefit everyone but currently we have nothing else and current data suggests that people are continuing to improve and benefit from these approaches.


@ Alistair Miller:

Do you think that patients should be allowed access to the data on the outcome measures that were laid out in the PACE trial's protocol? We have seen widespread coverage of the problems that occur when researchers deviate from their trial's protocol, and the way in which this leads to exaggerated claims about the value of the treatments being assessed. What is the highest percent that you think it would be acceptable for a clinician to claim recovered as a result of GET in PACE? Do you think that an SF36 PF score of just 60 is indicative of a normal level of disability, as was claimed by the PACE trial researchers?

I note that you (and Jessica Bavinton) avoid making specific claims about the value of CBT and GET, other than that they are beneficial, but not 100% cures. Without meaningful data on the efficacy of these treatments, it is difficult for patients to decide if they are worthwhile: 0.1-99.9% is quite a wide range.

The lack of effective treatments for CFS does not legitimise the false and misleading claims which have been made about GET, however difficult this may make things for those who want to make money from claiming to be an expert who can treat CFS.

The principle of GET is based on the fact that the people who make the best recovery from CFS/ME steer a compromise between over and under activity.


Right, it's a Goldilocks approach, so it's always possible to claim that the treatment was just not been done properly by the patient, rather than their being a problem with the treatment itself. If there any evidence that GET is more effective for CFS patients than for doctors? Seeing as blinding is impossible, it seems like GET is the sort of intervention which could lead to misleadingly positive results in trials for all groups. Homeopathy is able to generate similar changes in questionnaire scores in unblinded trials, despite being pure placebo.

It needs to be acknowledged that a major reason that many CFS patients feel that they should push themselves is the quackery that has surrounded the condition, the misguided emphasis on deconditioning, the false reassurances, and the exaggerated claims about the value of GET. It would be better for the NHS to focus on holding those responsible for these problems accountable, rather than pouring more money into treatments of such questionable value.
Laurellen
 
Posts: 18
Joined: Wed Aug 14, 2013 3:25 pm

Next

Who is online
Users browsing this forum: No registered users and 1 guest

cron