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The ME Association's continued support of the Sussex ME Society
- Thread starter Andy
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Sly Saint
Senior Member (Voting Rights)
I think it is important to distinguish between activity that is beneficial from the point of view of being enjoyable, good for general well-being, and maintaining a certain degree of mobility,
and activity that actually helps to improve a patients condition (ie the impact on their physical illness).
The first may be reasonably accepted, but the second with regards to ME is contraindicated.
Peter T
Senior Member (Voting Rights)
It is a potentially interesting study, though yet again another study that relies on subjective measures which are most likely to be subject to placebo or bias effects, and are not necessarily indicators of any change in the underlying condition.
Further there are the problem of the lack of a formal control group, there is some anecdotal attempt at using participants as their own controls, though in theory this could be a valid experimental design, it was not used here in a way that allows clear conclusions.
Further the authors seem to have no clear idea what they are attempting to do, compounding issues of making rest and relaxation more efficient with improving physical function.
However for me the biggest problem is not addressing the issue of orthostatic intolerance. My personal experience is that orthostatic intolerance can be a more significant limiting factor on activity than such as energy exerted. Unless they have some measure of orthostatic intolerance in their participants it is totally unclear what they are looking at or if they even have a homogenous group.
I need to read the article more thoroughly, but I suspect the theoretical biases of the authors yet again result in an experimental design producing in uninterpretable results.
Tiny feasibility study (12 patients) of recumbent isometric yoga, using a mood scale and the Chalder Fatigue questionnaire as outcome measures. Nothing useful can be deduced from this other than it's feasible to carry out such as study.
I found more details of the study here that describe the 'recumbent isometric yoga' developed for this study.
https://storage.googleapis.com/quetechce-com/material/Chronic_Fatigue_Syndrome_and_Yoga.pdf
It doesn't bear any resemblance to what would be done in a yoga class, as far as I can see. It's basically lying down in low light to avoid overstimulation and over 20 minutes moving into a few different recumbent positions and holding them for a bit, plus lots of lying on your back relaxing. Just getting to a local yoga class would use far more effort.
That feasibility study shouldn't be used to justify any yoga class.
They have now adjusted it to be
'Thousands of people in Sussex suffering from the chronic long-term illness ME receive vital support from a Brighton-based group – and its yoga classes have proved a huge success.'
The ME Association's position on CBT, GET, Pacing, the Lightning Process (as well as other claimed forms of management) are clearly set out in the reports and reviews we have published and that are available for you to freely access in the research section of our website:
https://www.meassociation.org.uk/research/published-research/pace-trial-and-illness-management/
#MECFS #LocalCharities #LocalSupportGroups #Yoga #SussexMESociety #ColinBarton
'Thousands of people in Sussex suffering from the chronic long-term illness ME receive vital support from a Brighton-based group – and its yoga classes have proved a huge success.'
The ME Association's position on CBT, GET, Pacing, the Lightning Process (as well as other claimed forms of management) are clearly set out in the reports and reviews we have published and that are available for you to freely access in the research section of our website:
https://www.meassociation.org.uk/research/published-research/pace-trial-and-illness-management/
#MECFS #LocalCharities #LocalSupportGroups #Yoga #SussexMESociety #ColinBarton
Andy
Retired committee member
MEA's full position statement on this post
I'm pretty much done with the MEA at this point.
Personally this seems to be so contradictory to the other aspects of the MEA's work that it's like there are two Associations, one that supports biomedical research and wants GET removed as a recommended treatment, the other that supports the "well, everyone is different aren't they, if it works for one person then it's worth promoting in case it helps another person" while blindly ignoring any potential of harm.
I'm pretty much done with the MEA at this point.
It would be very easy for the MEA to have a standard statement they put up with any article they link on social media that involves claims of improvement, help or recovery from any activity or treatment involving increased activity. I suggest something like this:
''People with ME need to keep their activity within their 'energy envelope' which varies according to the severity of their illness. Any activity that exceeds that level is likely to trigger Post Exertional Malaise, a significant worsening of symptoms and reduction in function that can last for days, weeks or longer.
Many people with ME find it difficult to keep their activity within their envelope because of the demands of daily life, so adding any extra activity will be detrimental. If there is room within your energy envelope to add an extra small amount of activity, then you may enjoy yoga, walking or some other light activity, but these are not treatments and there is no evidence that one activity done within the energy envelope is more helpful than another.
While we are pleased for individuals whose health has improved so they can undertake more activity, anecdotes suggesting it is the activity that led to the improvement, rather than the improvement that enabled the increased activity are misleading and should not be taken as a recommendation for others to try.''
''People with ME need to keep their activity within their 'energy envelope' which varies according to the severity of their illness. Any activity that exceeds that level is likely to trigger Post Exertional Malaise, a significant worsening of symptoms and reduction in function that can last for days, weeks or longer.
Many people with ME find it difficult to keep their activity within their envelope because of the demands of daily life, so adding any extra activity will be detrimental. If there is room within your energy envelope to add an extra small amount of activity, then you may enjoy yoga, walking or some other light activity, but these are not treatments and there is no evidence that one activity done within the energy envelope is more helpful than another.
While we are pleased for individuals whose health has improved so they can undertake more activity, anecdotes suggesting it is the activity that led to the improvement, rather than the improvement that enabled the increased activity are misleading and should not be taken as a recommendation for others to try.''
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Invisible Woman
Senior Member (Voting Rights)
All they have to do is say that the article is being posted as a news item and not as an endorsement of the contents of the article. Then link back to the advice guidelines they give.
The bolding is mine - these are two massive bear traps that I fell into. With some people experiencing a 3 day delay of PEM, then you can destroy yourself before the first bout of PEM kicks in.
The definition of small amounts is tricky too. I could lift something reasonable heavy once, but I might think "no, go easy, I'll lift something a tenth of the weight a few times" and the number of reps tips you into PEM.
Edited - though it seems as though the MEA guidelines could do with a review anyway.
The bolding is mine - these are two massive bear traps that I fell into. With some people experiencing a 3 day delay of PEM, then you can destroy yourself before the first bout of PEM kicks in.
The definition of small amounts is tricky too. I could lift something reasonable heavy once, but I might think "no, go easy, I'll lift something a tenth of the weight a few times" and the number of reps tips you into PEM.
Edited - though it seems as though the MEA guidelines could do with a review anyway.
adambeyoncelowe
Senior Member (Voting Rights)
'Not an endorsement' is a common disclaimer. They should use it.
large donner
Guest
This is so true and I am actually very annoyed with Charles Shepherd and his anecdotal personal comment about swimming and yoga.
If you have ME you have a ceiling level of available energy for a range of activities. If you chose to do some swimming or yoga within that that's still bloody pacing, its not exercise for a given medical condition that has any benefit other than being a personally chosen activity.
How one chooses to spend their time is their business but he really should know much better than to pick out activities that are very strenuous and leave himself open to be seen to be supporting such activities as beneficial in any way for "recovery" or improvement in ME.
If you cant do such activities plus the normal range of activities of daily living to the normal level of a healthy person due to ME then one should just really be quiet in my opinion in terms of making claims like "I find it helps me".
It doesn't help you anything, its just something you do within a severely reduced energy envelope with reduced recovery capacity because you enjoy it. If such "exercise" is a personal coping pastime then so be it but don't throw others under the bus with personal anecdotes and careless use of words.
Lets bloody call it as it is, its pacing not exercise.
When I can I like to go out for lunch, I enjoy it, I have to pace it and sit in uncomfortable chairs until I can't do it any longer and I can barely support myself at the table. Yet I don't claim that going out for lunch is beneficial for my illness or that its exercise, its not. Its just something I like to do just like anyone else and just like I did before I was ill.
The difference is now a small excursion is so physically taxing it has severely limited my ability to do it in the same way.
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Invisible Woman
Senior Member (Voting Rights)
I think there is also a further layer - balancing physical vs mental health.
Like @large donner, occasionally, I get to go out for an hour or so. Having been careful the day before and gotten extra rest that morning I go for a coffee & cake or lunch. Then, back home, I rest again. For the following day,at least, I rest up.
It doesn't help me physically, but it makes a considerable difference to my psychological well being. It also helps my relationship with my partner,because we find we talk more about things that interest us. At home we're more likely to talk (when I can) about things we need to discuss.
I would hate to see people ditching the things that enhance their lives and improve their psychological stamina just on the back of a bit of exercise being good for you.
For me, the little outing enhances my life much more than a swim, though I would dearly love to swim and can only dream of being able to do both.
Like @large donner, occasionally, I get to go out for an hour or so. Having been careful the day before and gotten extra rest that morning I go for a coffee & cake or lunch. Then, back home, I rest again. For the following day,at least, I rest up.
It doesn't help me physically, but it makes a considerable difference to my psychological well being. It also helps my relationship with my partner,because we find we talk more about things that interest us. At home we're more likely to talk (when I can) about things we need to discuss.
I would hate to see people ditching the things that enhance their lives and improve their psychological stamina just on the back of a bit of exercise being good for you.
For me, the little outing enhances my life much more than a swim, though I would dearly love to swim and can only dream of being able to do both.
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Good points. My suggested wording would need to be much more cautious. Probably best to leave out the paragraph about adding activity.
My concern about just putting a simple disclaimer and a link to MEA guidance is that by the time people have read the article and got excited at the prospect of yoga or LP being helpful, they may not take much notice of a simple disclaimer that just says we don't endorse this. And even less likely to click through to read the MEA detailed guidance. And a lot of the people reading the article will be family, friends, and medics and may use it to give bad advice to pwME.
i would like the MEA to state categorically that there is no evidence that any added activity helps people with ME, and that it may cause long term harm.
And that increased activity is the result, not the cause of improvement.
Esther12
Senior Member (Voting Rights)
No control group, so can't tell us much.
If some people find yoga makes their life better, great, but that doesn't alter the fact that Colin Barton is untrustworthy and harmful. He has been working as a propagandist for Crawley, Miller, etc; promoting the Lightning Process, attempting to dismiss concerns about PACE, etc. Any time the MEA posts information about him or his group this should all be noted.
Invisible Woman
Senior Member (Voting Rights)
About 5 years ago into my illness, I would have said very gentle yoga helped me.
However, my illness progressed. It may even be that as my flexibility improved, I routinely did a little too much and, although it was initially helpful, it likely contributed to an overall decline.
When presenting this kind of thing, what you really need to do is ask some longer term sufferers what they did. You'll probably find many of us tried many of these things, may or may not have found them helpful for a while and deteriorated anyway. The deterioration may have been despite or because of the therapy, or possibly might have happened anyway.
However, my illness progressed. It may even be that as my flexibility improved, I routinely did a little too much and, although it was initially helpful, it likely contributed to an overall decline.
When presenting this kind of thing, what you really need to do is ask some longer term sufferers what they did. You'll probably find many of us tried many of these things, may or may not have found them helpful for a while and deteriorated anyway. The deterioration may have been despite or because of the therapy, or possibly might have happened anyway.
Keela Too
Senior Member (Voting Rights)
Peter T
Senior Member (Voting Rights)
Having gone to the trouble of writing a longer comment in response to Charles Shepherd's attempt to redirect comments on this MEA post to the issue of gentle yoga, I thought I would get my money's worth and copy it here:
I take your point Dr Shepherd and have great respect for your expertise in relation to ME and your commitment to our community, but would repeat even the idea of drawing attention to 'gentle yoga' for people with 'mild ME' without some form of caveat is of concern.
'Yoga' itself is a potentially very confusing term. Classical yoga covers an enormous range from remedial exercise, gymnastics and posture work, through breath and 'energy' work to meditation and religious practice. Yoga as taught in the UK focuses primarily on body work but again there is an enormous range of approaches and content, some of which would undoubtedly be contra indicated for anyone with any level of ME.
The origin of the wor[d] 'yoga' is 'yoke' and it is intended to achieve union with the divine.
Undoubtedly some people with ME find yoga a positive experience, but an aware teacher and serious consideration of how it fits into one's total energy envelope is vital. It may be one person find it fits smoothly into their total activity plan, but someone else with the same level of ability/disability finds it is too much and triggers a downward spiral.
As well as anecdotal evidence of it being a positive experience other people report yoga triggering a significant worsening of their condition.
Personally I found formal yoga classes, even on a one to one basis with a teacher who understood my condition, triggered PEM. This was when I only had mild ME and I had also formerly trained as a yoga teacher, with experience of a number of different forms of hatha yoga as well as some knowledge of how posture work fits into the overall framework of yoga.
Also it is important to ask why people are doing yoga. Is it to have an enjoyable experience, is it to maximise fitness and flexibility within the constraints of their ME, is it to help manage their ME through body awareness and relaxation skills or is it to treat their ME or somehow to improve their underlying condition?
There will be many experienced and otherwise competent yoga teachers who believe they could treat ME either through improving the body's ability to heal itself, through the inherent healing properties of certain postures or through removing energy blockages in the chakra system.
When you get into the whole field of breath and energy work, I would argue it gets even more complex and potentially dangerous. This is a conceptual framework that is alien to western scientific thought and largely lacks any established common language such that the usual English translations of many technical terms are at best misleading. Further it is my experience that very few practitioners in this country have sufficient experience or insight to be doing anything other than dabbling in this area. So it may be in practice little different to faith healing or spiritualism.
This is an enormous can of worms for the MEA or a doctor just to throw out as a good idea without any warnings or cautions.
On reflection I think there are potential theoretical benefits from yoga for people with ME
- a recreation for those that enjoy it
- a tool for maximising flexibility and fitness within the constraints of an individual's ME
- a way to help manage your ME by increased body awareness and relaxation
However in practice I doubt there are many, if any, yoga teachers with the insight and knowledge to safely provide any of these to people with ME without also having very aware participants who are able know when to stop and when to say no. The training of most yoga teachers is to set goals and to work with people effecting change and improvement, and most (though not all) forms yoga taught in the UK have an ideal of the posture which people are encouraged, even pressurised, to perfect. For a yoga teacher to be able to work well with people with ME I suspect would be despite rather than because of their training.
Further for most of us there are more important practical things to do in our life and we do not have any spare capacity. However as others have said, for such as the MEA, to appear to be endorsing yoga puts pressure on people, either directly or through their carers or family. Do people not realise for every unhelpful article published thousands of patients will get unsolicitated copies, emailed links or advice from well meaning acquaintances? In general I try to ignore them, though one GP friend got several thousand words and a reading list in response when he suggested I look into the Lightening Process.
I take your point Dr Shepherd and have great respect for your expertise in relation to ME and your commitment to our community, but would repeat even the idea of drawing attention to 'gentle yoga' for people with 'mild ME' without some form of caveat is of concern.
'Yoga' itself is a potentially very confusing term. Classical yoga covers an enormous range from remedial exercise, gymnastics and posture work, through breath and 'energy' work to meditation and religious practice. Yoga as taught in the UK focuses primarily on body work but again there is an enormous range of approaches and content, some of which would undoubtedly be contra indicated for anyone with any level of ME.
The origin of the wor[d] 'yoga' is 'yoke' and it is intended to achieve union with the divine.
Undoubtedly some people with ME find yoga a positive experience, but an aware teacher and serious consideration of how it fits into one's total energy envelope is vital. It may be one person find it fits smoothly into their total activity plan, but someone else with the same level of ability/disability finds it is too much and triggers a downward spiral.
As well as anecdotal evidence of it being a positive experience other people report yoga triggering a significant worsening of their condition.
Personally I found formal yoga classes, even on a one to one basis with a teacher who understood my condition, triggered PEM. This was when I only had mild ME and I had also formerly trained as a yoga teacher, with experience of a number of different forms of hatha yoga as well as some knowledge of how posture work fits into the overall framework of yoga.
Also it is important to ask why people are doing yoga. Is it to have an enjoyable experience, is it to maximise fitness and flexibility within the constraints of their ME, is it to help manage their ME through body awareness and relaxation skills or is it to treat their ME or somehow to improve their underlying condition?
There will be many experienced and otherwise competent yoga teachers who believe they could treat ME either through improving the body's ability to heal itself, through the inherent healing properties of certain postures or through removing energy blockages in the chakra system.
When you get into the whole field of breath and energy work, I would argue it gets even more complex and potentially dangerous. This is a conceptual framework that is alien to western scientific thought and largely lacks any established common language such that the usual English translations of many technical terms are at best misleading. Further it is my experience that very few practitioners in this country have sufficient experience or insight to be doing anything other than dabbling in this area. So it may be in practice little different to faith healing or spiritualism.
This is an enormous can of worms for the MEA or a doctor just to throw out as a good idea without any warnings or cautions.
On reflection I think there are potential theoretical benefits from yoga for people with ME
- a recreation for those that enjoy it
- a tool for maximising flexibility and fitness within the constraints of an individual's ME
- a way to help manage your ME by increased body awareness and relaxation
However in practice I doubt there are many, if any, yoga teachers with the insight and knowledge to safely provide any of these to people with ME without also having very aware participants who are able know when to stop and when to say no. The training of most yoga teachers is to set goals and to work with people effecting change and improvement, and most (though not all) forms yoga taught in the UK have an ideal of the posture which people are encouraged, even pressurised, to perfect. For a yoga teacher to be able to work well with people with ME I suspect would be despite rather than because of their training.
Further for most of us there are more important practical things to do in our life and we do not have any spare capacity. However as others have said, for such as the MEA, to appear to be endorsing yoga puts pressure on people, either directly or through their carers or family. Do people not realise for every unhelpful article published thousands of patients will get unsolicitated copies, emailed links or advice from well meaning acquaintances? In general I try to ignore them, though one GP friend got several thousand words and a reading list in response when he suggested I look into the Lightening Process.
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andypants
Senior Member (Voting Rights)
I find even slow, careful stretching results in PEM. Which is incredibly frustrating, as it really helps with the discomfort of all those very stiff and sore muscles and tendons. Still, I will chose stiff muscles over a crash and potential worsening every time.
The idea of “working through” the pain and discomfort really does not apply to most PwME, but you could get yourself really deep into trouble before you realized that.
Posts specifically on the Japanese study of recumbent yoga for severe ME/CFS have been copied to this thread:
Development of a recumbent isometric yoga program for patients with severe cfs me, Oka et al, 2017
Development of a recumbent isometric yoga program for patients with severe cfs me, Oka et al, 2017