Article in Verywell:Treating Post-Exertional Malaise in Chronic Fatigue Syndrome

https://www.verywellhealth.com/managing-post-exertional-malaise-in-chronic-fatigue-716027

 

... but is activity the same as exercise? It may be. It may not be. Do you have to exercise to avoid inactivity?

 

Possibly a red herring, but …

Surely ‘exercise’ is an activity, but an activity that is primarily undertaken for its own sake rather than for an independent objective.

Personally I would classify ‘exercise’ as a leisure activity, though one our society collectively fetishises as necessary to maintain optimum health in the modern sedentary world.

Surely any goals for ME activity management should place higher value on activities that are necessary for the basics of daily living, eg feeding and hygiene, than on leisure activities. Obviously some level of pleasurable activity is necessary for psychological well being, which for many is seen to be leisure activity, so some way of budgeting for this is necessary for any sustainable approach.

[added - part of budgeting for pleasurable activities, might be other people covering other necessary activities. For example someone covering my basic household management and cleaning, allows for the possibility of me occasionally going out for lunch.]

 

Yes. I think the words are used differently by different people, but I would see exercise as being something done for no purpose other than exercise, whereas activity has some other useful purpose. The best sort of exercise is of course that for which coaches have to be employed and special facilities utilised.

 

Yes, with @Peter Trewhitt , I think exercise is activity done for the sake of doing it - that's about all.

There seems to be a simple absurdity in relation to exercise for ME.
Someone with ME is more or less by definition someone who cannot, or struggles to, manage the activities needed for the way of live they would otherwise wish to lead. Recovery or improvement would be getting closer to managing just those. To ask people to do some other sort of activity instead makes no sense, particularly as the benefit of an activity in terms of making it easier to do repeatedly tends to be quite action specific.

 

Small movements for those who are able can be beneficial, simple ways to engage in low-grade, constant movement throughout the day, utilizing natural movement patterns like walking and bending to get the pot out of the lower drawer.

 

Though obviously also part of our cultural obsession with formal exercise, this also reflects how modern medicine approaches rehabilitation.

We take people away into a separate location and work on any impairment in abstraction, more often than not on the assumption that the patient will generalise any improvement back into their ordinary life. There are many situations where this is appropriate, but they are not situations where the prime issue is significant restrictions on the maximum amount of activity that is possible.

[added - this is generalising the idea of pharmaceutical treatment, where an active chemical ingredient is identified and given in an isolated form for maximal effect, to other situations. Exercise becomes seen as the active ingredient.]

 

@Peter Trewhitt @Jonathan Edwards

Exactly. Not logical to impose exercise programs on very ill people who cannot accomplish activities of daily living. Or even others a little better off , who have to exert much will just to do basic activities of daily living.

Really, yet another example of how illogical some things can be, and how long these mistakes can carry on.

 

@Peter Trewhitt

Good point about exercise seen as if it is in the same realm as pharmaceutical treatment. And, what has been said many times is that if GET was a drug treatment for ME, it would have been pulled from the market. Supporters of GET for ME shouldn't have it both ways

Any type of disease treatment that is harmful should be stopped. Much more regulation and care is given where drug prescriptions are concerned.

 

This is where the meaning of words matters. It's exertion, not exercise. Please pay attention to the words that are used, their meaning is the entire point of using them. Those words aren't just labels, they have a meaning attached to them.

Now that PEM is getting taken seriously, I am not looking forward to the industry that will rise out of it saying they've been treating PEM for years, even though most still couldn't give a description that isn't identical to post-exercise fatigue.

In the end this is exactly like giving advice that poor people should just save money. Completely tone deaf and ignorant. Thanks, genius, no one's ever thought of that.

 

A pointless rant:

As usual this article is written in a way that makes sense to the writer and colleagues from their outside perspective. Taking the standard wisdom of the need for exercise and finding a way to make it work for those poor people with PEM (which now is a new buzz word for them to play with).

The reality is that from an n=1 POV so just my experience but one I've heard repeated in other unique ways by other PwME -- I used to do Karate waaay back in the day. When I couldn't do that any more I continued with my yoga practice and took up Tai Chi. Eventually I could not sustain either despite the fact that I very much wanted to and my kids were growing up so I did not spend intense amounts of time on their needs. I would like nothing better than to be able to do some simple yoga.

And it always gets me that these writers of such nonsense write about how PwME ought to behave while forgetting entirely that they are people not objects whose sole purpose is to fulfill the vision of how the writer feels things ought to be. PwME are people embedded in a context. They may have relationships that take up time and energy. Or they may need to do all of the work both at home and still work if alone. They may find they need to move home at some point. They might find taking care of business like banking cognitively fatiguing.

They may want to do things that are beyond them even without incorporating exercise such as care for a parent or just go to a wedding or funeral. Or maybe they do but have no energy then for those lovely exercises but they have managed to do something very meaningful to them and keep a connection to their world alive.

But it's like we are in stasis waiting for some smart allied health person to present their treatise on what we ought to do. For our own good. And as if we've never EVER heard of the idea that 'exercise is good.' Oh yeah, that's new.

Maybe they've come across a few PwME with mild symptoms and lots of support and help who can manage some exercise in their routine. So that's enough to convince them that it can and should be done by all.

But this is all normal and expected from allied health people who knowing that exercise is good now have a zeal for ensuring we all comply. It's not easy to imagine what the true situation is for PwME -- even sometimes for PwME (it took me a very long time). The problem of a world where there's a hands off approach to discussing ill health.

No need to get close and personal to anyone with the illness to forge an understanding. It can all be done with a little foraging around the internet. And voila, another shiny new expert opinion shared just like that. It's almost to say so easy, a kid could do it.

These types of articles are ubiquitous and it's clear that the lives of PwME and health exercise enthusiasts do not intersect at all.

ETA: I think I should add that people who write about exercise and ME and even now use PEM do not take one other thing into account that affects PwME and their ability to exercise -- Even I don't immediately remember how much it affects my functioning -- Orthostatic issues. Not that I understand them well but I experience them constantly. And exercising may in fact help but it does not seem to stop the inevitable for at least some.

I think there should be more focus on OI.

 

Telling people with ME that exercise will help them, is like telling those in extreme poverty that they just need to spend more money.

 

@Snowdrop

Bravo! Yes, we are not objects just waiting to be told how to live our lives.

What these people say reminds me of some magazines that "politely" find fault with all of us, then suggest how we can fix ourselves. Simplistic.

Being felled by ME is a tragedy. It is a serious complex, multi-system disease (paraphrased from the 2015 IOM Report). No simple recipe, diet, exercise program, new hair-do, or anything else in this category will fix ME.

 

Click-bait masquerading as journalism.

 

A thought re the notion of supposedly stress-induced PEM.

Surely stress goes hand in hand with cognitive load. When stressed it is impossible to not also, at some level, find yourself caught up in the cognitive effort that accompanies it. I appreciate that sometimes that cognitive effort may be below the surface, but it will still be there. I very much suspect that so-called stress-induced PEM is just cognitive-effort-induced PEM by another name.

 

This is what convinced me what total bunkum the PACE trial was, once I 'discovered' it in 2016. My wife (the person with ME/CFS) is forever pushing her limits, it's burnt into her DNA. The only difference since having ME/CFS is that her limits are much reduced, but she still strives hard and never ever gives up, she knows no other way. I'm sure most pwME are much the same. The PACE authors greatly offended me with their arrogant, self-entitled, prejudice-driven assumptions, and they still do, along with the rest of the BPS crew.