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Livestrong: 5 Tips for Maintaining a Fitness Routine With Chronic Fatigue Syndrome

Discussion in 'General ME/CFS news' started by Andy, Feb 6, 2021.

  1. Andy

    Andy Committee Member

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    https://www.livestrong.com/article/13729946-chronic-fatigue-syndrome-exercise/

    Code:
    https://twitter.com/MEAssociation/status/1357696773742034945
    https://twitter.com/user/status/1357696773742034945
     
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  2. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    It looks like a fluff piece and come across as having been written by people who don't really understand ME, quite frankly.

    It's a mishmash article that acknowledges there is a milder and more severe end and, instead of discussing one level or another, gives a misleading impression of a disease.

    For example -it suggests listening to motivating tunes as an upbeat rhythm increases endurance. Let's ignore that trying to build endurance is a road to nowhere for all but the mildest and for many, even just moderately affected, listening to a "motivating tune" will be enough to rapidly burn through their resources.

    It also suggests
    Where do I start? It's not about the impact necessarily now is it? What do they mean by yoga? That can range from breathing exercises to really tough work outs.

    Like Pilates some forms of yoga use repetitions. Repetitions are a huge problem for many ME patients and will cause severe muscle pain and weakness that may not appear for several days and can go in for days, weeks or longer. Where's the warning about aerobic exercise?

    It goes on to helpfully suggest things like using a recumbent bike as suitable. No. It's repetitive so could trigger muscle problems and you can still get out of breath.

    Regarding PEM -

    Clearly hasn't a clue. Once you've hit moderate levels and beyond PEM is a horrible and potentially excruciating flare and exacerbation of a wide range of symptoms. Not only will you not have a choice in not exercising, you may not be able to get yourself a hot meal, be able to brush your teeth or even sit upright.

    Where's the information on delayed PEM because if you keep hitting that threshold before the payback hits you're in for a world of hurt.

    All in all, I think there are the odd sentences within the article that are true. It's just when you join them altogether you get a dangerous mishmash that gives a passing nod to some folks are bedbound while going on to encourage people to exercise while underplaying the implications and severity of PEM.

    In my opinion this is a seriously dangerous article and I am gobsmacked to think that the MEA think this might possibly be a "good piece" .
     
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  3. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Three reasons not to read any piece with an arbitrary number in the title:

    1. Usually they are written to fill column inches.
    2. Prominence of individual items is decided by the literary form not relative significance
    3. Seven is the correct number for such lists (eg wonders of the Ancient World, Continents, Seas)

    (Last item is a poor joke to illustrate that such lists usually drag something in to make up numbers, though perhaps the authors reduced their list from seven or ten to allow for ME/CFS’s associated memory problems.

    Added - Though the article has some potentially useful points, especially in outlining PEM, they present their list with no regard for the fact that most of what they say in its current form is only relevant to very mildly effected people. Also I would have thought exercising to music is potentially dangerous as it adds an unnecessary processing load and sets an arbitrary external pacing element. Interesting that there are six items in their list of five.)
     
    Last edited: Feb 6, 2021
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  4. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    I was put off by the first sentence tbh.

    Any piece that is written in this overconfident instructive and childish style and carries misinformation in the first sentence (balanced meal makes you less tired etc...linking to more fluff and a couple of trash studies about gut biome and our favourite political non evidenced rag the BMJ), along with the type of adverts it carries is always going to be nonsense.

    I read on despite my growing irritation by the tone of the piece (editorial felt like a precocious child spouting off) and I’ve picked a few choice gems:

    “That's why it's so important for people with ME/CFS to learn their own boundaries and work with a doctor who can help them develop goals based on their specific needs and limitations.”

    and

    “Working out with ME/CFS is a delicate balance of doing the appropriate kind of exercise and doing it only when you're feeling healthy enough.”

    And

    “If you're able to be active and you get the green light from your doctor, following a routine can help you reap some of the benefits of exercise, such as improved mood and better sleep.”

    And

    "You can get up, get dressed and eat some breakfast and then sit or recline for a while, then get up and take your dog for a short walk and recline again. Then, you can put laundry in the washer and sit down again, rather than trying to do all of these things at the same time," Dr. Holladay says.



    this is from the preamble before they give you the tips for your “workout”

    So they have spoken to an “expert” who clearly is still peddling graded exercise despite the CDC withdrawing it and then another GP from Canada who has some weird lifestyle views about pro inflammatory foods, muscle repair and mindfulness (good selection of woo indicators there).the editor then inserts links to the benefits of exercise for getting better sleep!

    It’s total b****ks from start to finish.
     
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  5. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Do we need to think ourselves about what would be the appropriate information on fitness and exercise for someone with ME? This is not intended as a finished article, rather some tentative first thoughts that might lead to others contributing to a final statement or position.

    I think this topic is particularly important because of our cultural fetishisation of arbitrary non functional exercise, such as going to the gym. Evolutionarily our bodies might be said to function at their best with a minimum degree of activity, but until relatively recently that was realised by the necessities of remaining alive. Modern urban life has resulted in exercise as an end in itself. For many people it has become a significant recreation activity but combining this with the almost universal medical belief that such non utilitarian exercise is inherently ‘a good thing’ of itself we see many people feeling both bereft and of lesser worth when unable to undertake formal exercise.

    With ME there are varies concepts relevant to setting our activity levels: fatiguability, PEM, hypersensitivities, orthostatic intolerance, temperature homeostasis, ?

    Any discussion of exercise can not take place independent of overall activity level. For example anyone who is triggering PEM on a regular basis through their activities of daily living needs to dramatically reduce what they are attempting to do before introducing new activities, unfortunately many doctors or other professionals may have unconscious assumption that going to the gym and ‘getting fitter’ will result in more energy for other things.

    We need to ask questions about why someone wants to exercise
    - the biggie that needs addressing is the false belief that exercise can treat ME (need to distinguish those who are lucky enough to be able to increase activity in periods of spontaneous improvement in their underlying condition from most other people with ME)
    - recreation activity to fill time and perhaps even give a sense of self worth, which is not necessarily a bad thing but only if it can be accommodated within overall activity levels and within the specific constraints of the individual’s symptoms
    - getting an endorphin rush (a wonderful high especially when not experienced for a number of years but (invariably?) followed by a crash
    - sleep better, unfortunately we can not generalise from normal sleep to disordered sleep. There is no guarantee that exercise will help sleep patterns in ME, personally at times I find I sleep worse when physically tired, and certainly triggering PEM does not help my sleep patterns
    - remediation specific problems resulting from inactivity, such as bed sores, circulation issues, lung function should involve physical therapists with specialist knowledge of ME
    [added - socialising with other people ]

    Types of exercise and venues are particularly important especially given any other symptoms
    - gyms tend to be brightly light potentially noisy environments where chemical cleaners are used
    - swimming pools are potentially noisy and involve chemicals such as chlorine, but outdoor swimming has light and temperature issues and in the sea and rivers energy has to be expended just dealing with movement of the water

    [corrected some typos]
     
    Last edited: Feb 6, 2021
  6. Trish

    Trish Moderator Staff Member

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    Patronising superficial rubbish that pays lip service to the idea that activity beyond the person's limit that day triggers PEM, and the effects of orthostatic intolerance, but shows a complete lack of comprehension of the reality.

    The idea of being able to set goals and do a regular exercise routine is way beyond what most pwME can manage. I don't think it is a helpful article. Why not write an article listing 7 ways pwME can conserve energy to try to reduce frequency and intensity of PEM?

    When people have such severe limitations, why focus on encouraging housework and purposeless exercises that neither bring pleasure, nor ensure you have the energy for necessities?
     
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  7. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I think any article that discusses ME and activity, let alone exercise, should first describe and give at least a basic outline of different severity levels.

    If I were undertaking such a thing I think I would break it into sections along the lines of -

    1. Definition of ME and various levels of severity. I would also make it clear that just because you start out at one level it doesn't mean you can't get worse & that inappropriate management strategies used in misguided attempts to maintain function and fitness could lead to a more severe form of illness and disability.

    2. Activity / Exercise and ME - why it's a problem. PEM, the problem with aerobic activity etc.

    3. Deal with each level of severity individually, discussing the real life challenges a sufferer at that level typically faces. Where energy conservation as @Trish pointed out is more appropriate than expending energy. @Peter Trewhitt' suggestion where moving a patient to manage bed sores etc shoukd be included in the appropriate severity section.
     
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  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  9. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    I wonder is there any research that shows how disabled different severities actually are? I consider myself mild but I couldn’t attempt exercise that raises the heart rate or has short bursts of strength. I guess my question is:

    are there any mild people that should consider any form of exercise?

    it feels like this is a contradiction from my n=1 experience and the hallmarks of what I perceive PEM to be. Yes immediate and delayed extreme incapacitation following an event is part of it, but just as important (for me anyway) is the slow accumulation factor ...i.e. going just above or at your limit repeatedly over weeks and getting regular short lived paybacks or even worse a longer term setback.

    I get the feeling that this is not uncommon amongst the mild group, but I also hear (mainly in the form of a caveat by others more severe than me) that some people who are mild have a different experience (go to the gym, go hiking etc etc).

    This feels fundamentally impossible from my perspective, but I don’t know about others (mild is a large group). If they were able to do this without payback how do they know that they have PEM? Is there a form of ME when you get no restrictions and just a periodic bad day (like a migraine every 6 months or so)?

    I realise that this is probably rhetorical but it would be good to know whether anyone has ever tried to get an answer to this or have a perspective on this.
     
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  10. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I was diagnosed as moderate to begin with. Crippling pain and cognitive issues along with sudden loss of power to a limb were among early symptoms.

    The initial picture was complicated by ongoing mildish anaemia, a lot of relatively mild allergies and poorly managed hypothyroidism. So a lot of generalised muscle pain, headaches and so on.

    For the first 5-10 years I tried to "exercise" to some degree. In the mistaken belief that getting back to some level of fitness would help me do more before being clobbered by symptoms I cut back on everything else in order to focus on improving my own health.

    It didn't work. Each time it didn't work, I decided I just needed to change my approach. Over the years I fiddled about with shorter exercise bouts, longer gaps between sessions, alternating aerobic with stretching or toning sessions, experimenting with optimum number of reps and so on.

    I had the mindset it was me, I just needed to find the right approach and I'd be back in the metaphorical & literal saddle. Being of an engineer type mindset I can be slow to give up and very inventive in figuring out new approaches to.problems. Did that help? Nope.

    I know this is n=1 but I believe my approach, that positive can & will do attitude and refusal to be beaten is the reason why I am severely ill today. Not only did I sacrifice treats & outings with family and friends on the altar of my quest for health at the time, I made myself more ill and removed the possibility of participating later. I believe my well intended but mistaken approach has seriously negatively impacted my quality of life.

    The ME friends I had at the time would still be in bed while I was up and on my yoga mat. While I was trying to shoehorn my condition in a sleep hygiene approved, regular pattern they'd stay in bed until the afternoon if they had something on in the evening and do what felt right at the time. None of them have deteriorated to the extent I have.

    I was in PEM to a degree all the time and didn't realize but thought exercise woukd cause it to eventually lift. There was payback on top of the regular amount of PEM & the 3 day pattern became quite clear but, once I got through that patch, I kept plugging away trying different things to not trigger that. Sometimes I managed but eventually the crash would still come and be alk the worse for the delay.
     
  11. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    When I was milder I was able to go on reasonable walks (a few miles) regularly but invariably I would end up pushing myself further and triggering relapses.

    However a number of local ME groups run apparently successful swimming groups or yoga groups. Off the top of my head I can just remember with confidence that Sheffield has a swimming group, but was it Sussex where there is an ME yoga group? On patient forums you read about people going to the gym.

    I think Dr Charles Shepherd (ME Association) was at one time gathering information on exercise and ME; did he say something about this in a Facebook post relatively recently that sparked controversy because he seemed to be recommending yoga for people with ME.

    I was training to be a yoga teacher at the time my ME started, but have never manage to reliably restart a personal practice. About fifteen years ago when my health was better than now, I tried twice a week sessions pitched specifically for me with a friend training as a yoga teacher, but did not manage to find a stable level.
     
  12. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I think there are also very different types of exercise.

    Occasionally, if I'm up to it and can pace around it, I'll go for a gentle walk. Not for the exercise but for the sheer pleasure of being out doors. There's no plan to "exercise" or improve muscle tone, fitness levels or any of that.

    Maybe, when I was moderate if I'd stuck to just doing a little bit, purely for pleasure and without any thought of pushing or improving fitness or strength and staying well within my boundaries, I might not have gotten worse.

    The snag is our cultural attitude to exercise though. I don't know why there seems to be an almost universal idea that if you're nit pushing fitness boundaries, you're not doing it right.

    One of the most surprising things I've learned since getting ME is that, where you have the choice, not doing something or stopping takes far more self control & discipline than pushing or carrying on.
     
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  13. Trish

    Trish Moderator Staff Member

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    Meanwhile in real life most of us struggle to cut back activity sufficiently to avoid PEM. It has never been possible in my life with mild, moderate and physically severe ME to add any physical activity/exercise without crashing. My trouble has always been not being able to cut back enough.
     
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  14. Sisyphus

    Sisyphus Senior Member (Voting Rights)

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    I can’t tell if this is clueless or malicious. Walking is pure poison, almost as bad as standing up in place for the same amount of time.

    I have found that at least during the periods where I am able and willing to risk it, x distance of running produces far less crash than x distance of walking, especially if the terrain is chosen to be beneficial. That means going up stairs or hills which create a pumping action in one’s legs, which seem to offset the crash affects of the exercise. I doubt I am the only one who has experienced this.

    For the most part, limiting all forms of activity far enough to avoid a crash but not so far as create further decline due to imitating a cabbage has been the challenge.
     
  15. Mij

    Mij Senior Member (Voting Rights)

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    You were actually diagnosed with 'moderate" ME? How do they determine this? I don't use labels, but if I did, I would describe myself as 'moderate' as long as I'm able to lie down most of the day and not experiencing a viral re-activation. Put me in an environment or situation where I have no control, and my level of disability would collapse very quickly.

    There is no 'routine' with ME, it's something we determine for ourselves.
     
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  16. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    This is yet another aspect. I was only able to cut back enough because I was fortunate enough to have a partner to help me.

    I now feel my attempts to exercise and improve my fitness added to his burden unnecessarily.

    This cr@p advice and articles like this don't just affect patients but also the people closest to them. His time and effort not just wasted but used to ill effect as well as mine.

    I can only wonder if I had just used the support I had and rested in the manner I now realize is more appropriate, how different life might have been for both of us.

    The harm this type of article and the attitudes espoused ripple out.
     
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  17. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    When I was diagnosed I was still working and continued to work for a good 6 months or so.

    The consultant used the label moderate and then severe.

    I don't know if this is typical for all ME patients in the UK or if the severity label was applied to indicate a level if severity and functioning to my employer or for letters to the DWP and the like.

    Adding that severity label has helped me in the past. Particularly when someone got a bee in their bonnet and I was able to point out that the previous NICE guidelines recommended GET for moderate sufferers. As my consultant had put severe ME on my records I was able to argue that GET wasn't appropriate.
     
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  18. Mij

    Mij Senior Member (Voting Rights)

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    Ah ok, that would make sense if you were still able to work.

    I was diagnosed with 'atypical' ME because I didn't have the typical pain, neuro and insomnia issues as most patients. I didn't have many symptoms except not being able to stand or walk for more than 5-8 minutes, which would fit into a PVFS dx at the time.
     
  19. jonathan_h

    jonathan_h Established Member (Voting Rights)

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    Has anyone asked ME Association decision makers why their official account keeps tweeting out harmful garbage? Didn’t we just go through this a few weeks ago?

    Edit: I’ve sent a complaint through their website. I’ll update if I hear anything worth repeating.
     
    Last edited: Feb 6, 2021
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  20. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    I can definitely relate to that ...we also have the ‘push on through/resting is for wimps’ doctrine from the eighties onwards. I definitely had the mind-set that doctors needed managing (I have a less than favourable experience with doctors since the age of 7) and applied my project management skills to getting my diagnosis (took a year). When I got my diagnosis I was so relieved that there was an answer, I didn’t really think too clearly to do anything but follow the NHS advice (I was a bit foolish there).

    For me I had the dreaded GET as you know. This was fine as gentle walking (especially when that was all I was doing when signed off sick from work for 5 months). As soon as it got to a minute of jogging though my hips and knees hurt so much it was self limiting. Even though at that point I believed that GET was still the answer I decided that it shouldn’t involve jogging due to the stabbing pain which was definitely not an exercise pain/ache. Immediate feedback like this was typical of my early experience ...I remember carrying a bedside table to the car to go to the tip ..it wasn’t that heavy but within hrs I was laid up. I tried this out a couple of times and soon realised that payback was consistent with lifting/carrying.

    It feels like there may be some heterogeneity between experiences in feedback/pain? Was your pain similar to mine @Invisible Woman ?

    I still carried on a daily 20min walk for about a year but avoided any lifting, jogging/high heart rate activity etc due to these early warning signs. Eventually whilst trying to hold down my job I dropped the walk and moved from 4500 steps per day down to 3500 and now I’m on 2500 for around 3 years now (well 1500 whilst I’m still in relapse). On 4500 and 3500 steps I was crashing bad once every 3 weeks or so. On 2500 with a less demanding job there has been a corresponding drop in what I call unpredictable but frequent crashes.

    I am not sure whether the GET was harming me or whether it was the job or just my bad management. It’s probably a combination. I’m not sure whether I’ve declined over the last 8 years either ...it feels like it but I know this could easily be attribution bias. In terms of duration of walking I’m limited to 200 steps (150m) at a time whereas 4 years ago I could walk a mile into town. I guess I will never know.

    one things for sure, with 2500 steps, heart rate below 100, not being able to lift or carry weight of any size, and direct pain feedback exercise feels like an impossibility.


    :hug:

    That’s what it feels like, although I could give up work ...I often fantasise about all the things I could do if I retired ...I suspect that’s wishful thinking....it doesn’t feel like exercise could be part of that though.


    I don’t have a Facebook account mainly because I find the way some people ram boring stuff down your throat or massage the truth a bit tedious.

    I’m not really exposed to the broader experience as a result. I wonder what the heart rate expenditure would be for swimming vs walking. It feels like they would be similar? The gym thing is interesting ...I wonder what it actually means in real terms. I went on our last holiday abroad in 2014 after I was first diagnosed... that had a swimming pool (thankfully not shared..urgh not appealing to me) I went in the pool to cool off but didn’t really do much swimming. I read somewhere that most normal peoples attendance at the gym expends so little calories that they wipe all of them out on the snacks and drinks they consume there. I suspect that there is quite a bit of this sort of thing going on but that is probably me being bitter and cynical :rolleyes:

    Despite my reservation it seems there is quite a bit of variance in experience and this could be related to feedback via PEM? I guess our experience of PEM must vary since the symptom profile varies so much?
     
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