Discussion in 'Lifestyle Management' started by Andy, Jan 3, 2019.
Anyone trying to talk about exercise and ME/CFS is stepping into a minefield. This article dodges a lot of the usual problems e.g.
Personally, I now prioritise doing the grocery shopping and vacuuming and weeding the garden (and, well, everything else I do) over 'exercise' , and the so-called gentle exercises of yoga and pilates that are recommended made me worse. But I think this nuanced article (with e.g. a section on 'shortcomings of the research') is useful for newly diagnosed people with ME wondering what on earth to make of all the contradictory advice.
I also prioritize normal daily life (which no longer includes shopping, vacuuming, or weeding for me) over "exercise". If I did stuff for the sake of exercise, I wouldn't be able to do more important things.
Some sensible advise for sure, BUT I’m not sure about this bit:
“Other low-impact exercises include:
Step aerobics (if you're in fairly good shape)”
It's time that housework was recognised as low impact exercise. Occasionally I manage to empty the dishwasher and feel so pleased with myself! It means it's a good day.
I think the focus on 'exercise' generally is misplaced.
Activity encompasses everything that you do and so uses energy. This is something that all the trials on GET seem to avoid taking into consideration.
I think better advice would be to try and keep as active as you can without causing worsening of symptoms, not 'doing exercise'.
I have mixed feelings about the article. It sounds like good advice, and it's good that it makes clear the difference between PEM in ME and the evidence that some exercise helps in FM. But, it seems to me to make light of PEM/payback if you overdo it slightly when testing your limits.
An upswing of symptoms for a day or two - if only that's all it was!
And it plays down the problems with the GET research, still leaving the impression that it helps some people.
The whole article is geared towards gradually increasing activity as a good thing. That is going to leave people with the idea that one can go on increasing and increasing, and feeling they have failed, or, more important, other people judging them as not trying hard enough if they find they can't add any exercise to their daily life. No mention of energy envelopes, no mention that some of us do too much already and the last thing we need to do is add more activity.
Many of us on this forum find that adding exercise is impossible and what we actually need to do is cut back, if only coping with our daily needs would allow us to do so.
The only time I tried Pilates of the gentlest sort done lying down was while I was still working part time with mild ME (SF-36 PF 35 to 50). Just that little bit of extra exercise from the Pilates added to my already overstretched envelope tipped me over into PEM, and it wasn't just for a day or 2 as the article suggests.
I would be interested to know whether anyone else on this forum reading this article has room in their energy envelope to add exercise that is done simply for the sake of fitness.
Perhaps I'm feeling particularly grumpy about this because it's New Year's resolutions time of year, and even at my old age I am not wise enough to completely escape the ruminations on eating more healthily and trying to get fitter that the western world surrounds us with at this time of year.
I actually spent some time lying in bed yesterday plotting plans for doing some simple strengthening and stretching exercises that I could do lying in bed. But then I remembered that needing to get out of bed to deal with the essentials such as making sure my daughter and I have meals to eat, and clean dishes to eat them off etc. feel at the moment as though they are stretching my envelope to its limits already.
So good luck to anyone who finds this article helpful. But for me, I have to put it out of my mind, along with the feeling of inadequacy that I cannot follow its advice.
The journalist has FM and I wish they would stop obsessing and making exercise recommendations for ME.
That explains the website. I wondered if that was the case. I agree she should stick to giving advice for FM and leave ME alone.
My wife is mild/moderate, and the idea of doing extra exercise to improve fitness is a complete non-starter. She pushes herself hard to her limits, and it is much more about doing us much "normal living" exercise as she can manage, whilst avoiding severely degraded fitness. I think my wife is probably quite fit, but no matter how fit you are if the energy supply is not there, you are going to end up looking unfit. A formula 1 car doesn't look very fit if it's fuel flow is obstructed.
Reading it again - I agree with @Trish.
I think sometimes we are just so pleased when an article says to listen to your body!
The 'if you're in fairly good shape' part indicates to me that she has no understanding of PEM.
Her articles are many and they are short and generic for the most part. Not very helpful.
Her bio says
You're absolutely right. I got confused. I had assumed in the past that she was diagnosed with CFS, but that came from reading her (for years) articles on About.com on her fatigue issues, no doubt fibro-related.
I even looked it up yesterday but became confused today. Ach.
In my case exercising caused me permanent damage numerous times. There needs to be more warnings for true ME patients, and preferably amendments to criteria to include permanent worsening.
Edit: Do any ME criteria include permanent worsening after exertion as a symptom?
I wonder if anyone has read the Newcastle CRESTA Fatigue Clinic booklet called, "Managing your Energy" - it is online as a PDF if you search it. In that the new advice is opposite to all the ages old hogwash about being active and doing aerobics, etc,. I remember when I was at my worst 20 years ago and a consultant told me that what I needed to do was "vigorous physical jerks" and "marching on the spot". Since then all I've read has been similar and it's counterintuitive to what we all experience, but the CRESTA booklet speaks to what we need, which is to listen to our body and get as much rest as we need. It's a good guide, however, it is very idealistic, especially if you have no carer and life pressures you to get things dealt with instead of getting the rest you need. But I think the current advice trend is much like the booklet.
For those interested in reading it, https://www.ncl.ac.uk/media/wwwncla...gue Booklet - reformatted 8th August 2017.pdf
It's quite contradictory. First it says to listen to your body and avoid aggravations. Then it says ignore these signs and symptoms to increase activity by up to 20% per week.
It also mentions endorphins as making you feel better, yet my experience of exercise is that I no longer produce endorphins when I'm ill. It was the first sign that led me to ME as a diagnosis. Has anyone else noticed that?
How quickly do they think deconditioning sets in? Because this says that even resting during a flare can undo all your 'progress'. But I doubt a day or two will significantly impact how fit we are. My understand is it happens around the two-week mark, though it varies from person to person?
There's some pacing, then more encouragement to increase which undoes it all.
It still insists that doing less causes you to have less function, rather than asking if it could be the other way around. There's no evidence provided for this. It's all presented as 'common sense', without any recognition that this may not be a 'common' response to activity.
Then there's more on personality types: fatigued people did too much in the past, built up a long-term deficit in energy, and don't know how to relax. There's no evidence for this in the document; it's just taken as read. It doesn't make sense to me because I've been using relaxation techniques since I was 13-14 (and was doing SATs).
Their model is that most fatigue is 'gradual' onset. This ignores the fact that for a sizeable chunk (majority?) a sudden onset after a virus, rather than a gradual onset with no clear onset, is the usual course. Of course, sudden onset doesn't sit with their 'slowly getting unfit' model.
It's all very generic and shallow. It seems designed for otherwise healthy people who are just tired all the time.
Separate names with a comma.