Monday, 12 May 2014

ME Awareness - Why NOT Exercise?

Recently I have seen several articles advising ME patients on how they should safely "exercise". 

I take issue with this because, in common parlance, use of the word "exercise" implies elevating your heart rate and aerobically challenging your body.

Thanks to recent presentations by Dr Mark VanNess, we now know this is not a good strategy for coping with ME.

So my post for ME Awareness is going to explain why the word, "exercise", gets my back up so much!  I suspect I am not the only ME sufferer who reacts this way!

Why ARE we so sensitive to this word, "exercise"?

Let's look first of all, at the advice about exercise given to the general public in the UK.

Turning to the good old NHS website, and we can find a plethora of articles on how we might build more exercise into our lives.  All good so far.

However I'm interested in how they define exercise, and in the article on the Benefits of Exercise I found the following:

What counts?
Moderate-intensity aerobic activity means you're working hard enough to raise your heart rate and break a sweat. One way to tell if you're working at a moderate intensity is if you can still talk but you can't sing the words to a song.
Examples of moderate-intensity aerobic activities are:

  • walking fast
  • water aerobics
  • riding a bike on level ground or with few hills
  • playing doubles tennis
  • pushing a lawn mower
Daily chores such as shopping, cooking or housework don't count towards your 150 minutes. This is because the effort needed to do them isn’t hard enough to get your heart rate up.


So, it seems MY understanding of the word "exercise", is indeed the way the NHS view the word.  Exercise basically means getting breathless and sweaty.  Even daily chores like housework don't count!

So WHY oh WHY is this word ever used in the context of advice about ME?

Could it be that the medical profession use the word in a different way?  Maybe that is part of the answer, afterall physios talk about "stretching exercises" and these exercises don't usually involve an elevated heart rate?  Oh and schools also give out maths "exercises" as homework!

So perhaps "exercises" (that is: activities to do as a form of practice) are totally detached from the meaning of our word "exercise" (activities that raise heart rate)?

If that is the case, then "exercise" (singular) should still never be used in an ME title!

Maybe we could find a better word?

I like the idea of using the word "movement".  Even the word "stretching" sounds too much like a fitness activity for me.  Let's face it, I fully agree that it is a good idea to do some sort of activity that will help reduce the amount of muscle wasting and potential bone loss.  Yet throwing the word "exercise" into the title of an ME article often means that the wrong impression is given.

So what level of "movement" should ME patients do?

Exercise in the conventional sense is obviously out!  Dr Mark VanNess has explained how keeping heart rate low is important, because an ME patient cannot increase their aerobic respiration effectively.

When I heard him speak in Newry in February this year, he suggested that we keep our HR below 110 bpm as a good starting point.

Elsewhere I've seen the formula

(220 - Age ) x 0.6 

used to find a suitable maximum HR for some-one with ME.

In my case this works out at only 101bpm!

It is incredibly difficult to do anything with this as a constraint.  Walking across the kitchen to make a cuppa usually lifts it to 110, and having a bath or shower raises it above 140!

Nothing, that the NHS would count as "exercise", could possibly be done within this constraint!!

Yet the NHS is so wedded to the idea that exercise is some sort of magic "cure all" that they can't admit that advice to exercise will actually make ME patients much worse!

I wish that those who write about preventing physical decline in ME would now avoid using the word "exercise".  This simply because the general public, and well meaning friends, just read the title and forget the context.

Exercise, in the sense that we all use the word, is never going to help ME.

Dr VanNess used the analogy of a credit card to explain how ME patients are slammed with huge interest rates when they exceed their low income energy budgets.  He said that keeping exertion levels to a minimum could help ME patients to avoid the high interest penalties (often called a "crash") and so get the most from their limited energies.

Obviously exercise in the conventional sense was not what he was talking about! In my view the word should now be totally removed from the lexicon of ME related writings - unless of course it is to advise that "exercise should be avoided"!!

I'll end with a quote from Dr Paul Cheney:

“The whole idea that you can take a disease like ME and exercise your way to health is foolishness. It is insane.”

Links to other blog posts written for #May12BlogBomb can be found at:


  1. I appreciate your thoughts so much, I really do! I wish there was a way I could emotionally connect with my fellow pwc's who can't exercise, because I totally get it and I totally support them in not being able to exercise. I mean, I really do!! My heart is with each and every one of you. But I am one of the lucky 5%, and I can exercise a little, and have been for a decade. I learned how to listen to my body and it's very hit-or-miss what I can do and when. It makes me feel lonely that I don't feel comfortable to talk about something that brings me joy and helps my body amongst my fellow pwc's. It makes me feel lonely that I don't have any support about who "I" am in this damn disease. I just felt it was important for me to share those thoughts; I hope they are received as intended, with love and light! I just found a Facebook group of pwc's like me who can exercise a bit, and that is making a huge difference for my psyche! Hugs, Judy

    1. It seems this illness affects everyone to different degrees. I am glad you are able to exercise in a more conventional sense. Perhaps I too will soon be able to do so. In the mean time it is not something I can do. Best wishes. S.

  2. the whole concept of exercise in ME seems ridiculous to me, it's like being poor and throwing away what little cash you have! I "use" chores to not turn completely into a jelly fish like taking out the trash and even get a little upset when housemates do it for me ;) but walking around the block just for the sake of walking.....neh

    1. oh and I should add that of course I'd walk/run/gallop if there was improvement, but there is none or so little that it's more frustrating than anything else

    2. Totally agree.... we'd all "exercise" sufficiently if we were sufficiently well! I'd love to walk a reasonable distance again, I used to climb mountains for fun, now if I walk the length of my house, I've to stop and rest before walking back again!!

  3. It's so difficult to figure out what type of "movement" one can do. Especially since it varies from day to day and often you just don't know where your limit is for that day until you hit the wall, or don't.

    The NHS is obviously very confused about the nature of this illness. Yes, it is important to prevent deconditioning to the extent that one is SAFELY able to. But since deconditioning is NOT the cause of ME (I don't know what is, but it's just not), a fact that medicine has failed to grasp, not worsening one's ME should be first priority. It does no good to be "conditioned" if one's ME is so severe one can't get out of bed. Foolish and insane indeed!

    I do miss exercising so much... it's just cruel to have them tell me to do something I want to do anyway but know, from repeated unfortunate experiences, is bad for me. At different stages of my illness, i've been able to do different "movement" I think the safest for me, at that time, was to float in a pool, swim three strokes, then float for 3-5 mins. If nothing else, I love the feel of water.

    1. I agree about the NHS - I think the psychiatric lobby are in positions of some power here and seem to be resisting change. However there are also enlightened medics who understand the illness and recognise our very real problems with post exertional malaise (PEM) and therefore treat us more carefully. Hence the sort of patchwork effect of ME care under the NHS.

      However I think the tide is slowly turning. Hope so anyway....

  4. Chores and just daily activity should be seen as a form of exercise - it can be as 'brisk' or as 'gentle' as you require.

    1. yes but for us nearly everything is like, to stay on topic, 'brisk' or 'gentle' mountain climbing

    2. I quite agree Hawthorn - some very mild housework activities are certainly "exercise" enough for me. However the way the NHS sees it, I have NOT exercised by doing these tiny activities. NHS only counts stuff as "exercise" if it actually raises the heart rate.... Hence our problem....

  5. Great post Sally and I find the part about the heart rate particularly interesting as the girls OT is talking about starting a new regime with them which requires them to use a heart monitor, work out their base rate and then for them only to do activity which keeps them within a "safe" range to prevent their bodies from become too stressed during activity. Apparently it's a slowly progressive regime which means if you continue to work daily within your safe range you will gradually be able to build yourself up to doing more and more, all be it over a long period of time and wearing the heart monitor to ensure you don't go out of your allocated safe zone. She is in the process of researching the regime and finding out the best heart monitors for the girls to wear before we consider beginning it - so will feed back to you if/when we do this and let you know what it entails more fully.

    1. Tanya, I've been trying this myself recently (probably need another post LOL) and feel I am having some success. I am using the Rythym+ armband monitor which doesn't have a read out, but sends info to an app on my iPhone (I'm using Endomondo). This is working well for me, and I check how I'm doing when active at all, and sit or lie down when it goes up. NOT one bit easy, I should add. ;)