(not a recommendation) What if exercise makes you worse?

[Simone]

It would be good for this charity to interact with the ME community more broadly as it is a National charity.

Just to clarify, the organisation, ME/CFS Australia (SA), isn’t a national organisation. It’s the ME/CFS organisation for South Australia. Members of the governance committee are very involved with the Australian ME/CFS community.

 

[Inara]

"Focus on increasing exercise duration and don't get hung up on increasing intensity. Long and slow is better."

Ouch.
Wrong, wrong and again wrong. Why are research and people's experiences so consequently ignored?

Besides, "long and slow is better" is not a general rule in training. It's a different impulse.

[I wish so much I could restart my endurance activities...Doing sports in the nature is for me deeply fulfilling and pure happiness.]

 

[Snow Leopard]

This is the exact opposite of my experience. High intensity short duration is borderline manageable sometimes, while anything longer duration completely wrecks me for weeks. Which makes sense as aerobic energy production seems to be what is impaired in us for whatever reason.
It feels a bit like whoever wrote that would tell people with diabetes to eat food which has a very insulinogenic response - after all, if you can't make/respond to insulin you just have to focus on doing exactly what your body cannot cope with. The important part seems to be to just make up stuff and ignore the health condition you are writing about as thoroughly as possible to maximize the possible harm you cause.

Same here. Duration won't build fitness (and won't have much measurable benefit), brief intensity will.

 

[Mithriel]

If I understood correctly, the workwell findings mean that energy production goes like this anaerobic for about 2 minutes then aerobic which is where healthy people stop but we quickly got anaerobic again, not natural.

Anaerobic after aerobic is for short spurts such as running for a bus, (or escaping a lion).

So SHORT bursts of exercise work well for us. If we never need to go into the second anaerobic system to get the ATP we need, no damage is done.

Fitness increases in healthy people because they slip into anaerobic mechanism. This damages mitochondria and the products of that tells the cell to increase the number of mitochondria. I am not sure of how that relates to becoming fitter in ME.

 

[Wonko]

All hypothesis, dredged up out of cold storage from over a decade ago, and I may not have understood it then, let alone these fragments left to me now.

More mitochondria, fixed resource inflow, faster resource burn, more toxins produced in the same time, shorter run time (due both to cleanup being impaired/swamped as respiration is impaired, and resources being used faster than they can be replaced).

So being "fitter" may equate to being sicker, stronger, but with less power, more severe PEM.

Only being one person, with a slightly iffy memory, I am not in much of a position to comment as to any hypothetical validity of this hypothesis.

ETA - it looks like I am assuming that the inflow and egress of stuff through the cellular membrane, and possibly internal membranes, is impaired - this would seem to be correct, I do think this, but I am currently unaware of any actual evidence for this, science wise, so quite why I think this would appear to be unclear.

 

[inox]

So being "fitter" may equate to being sicker, stronger, but with less power, more severe PEM.

That's how it was for me, since I went many years undiagnosed. My body was stronger, more fit - but I was in constant PEM and very, very sick and in many ways able to do much less than now.

 

[Inara]

"According to Jim Beatty, personal trainer and owner of FitnWell in Philadelphia: "There is always progress to be had. If a person is getting worse from exercise, then either the stress or the recovery is incorrect. Our bodies are adaptable machines … we can choose to do something that is appropriate that will improve us." Eventually, most people can participate in strength training and endurance workouts, albeit at a pace and a level that is appropriate for them."

I made the experience it's no use discussing with most fitness people (i.e. people who make a living in the fitness industry). In a seminar, I shared my opinion and experience that 1) training doesn't have to lead to fat loss (and weight loss - but then muscles weigh more than fat), 2) overweight (too much fat mass) doesn't have to be due to eating habits. No way, they simply wouldn't accept other possibilities than the stereoype ones.

So it's no surprise they don't accept the possibility that exercise can harm some people.

 

[Snowdrop]

Just to clarify, the organisation, ME/CFS Australia (SA), isn’t a national organisation. It’s the ME/CFS organisation for South Australia. Members of the governance committee are very involved with the Australian ME/CFS community.

Thanks for the clarification. I did know that they were a South Australia org that I believe merged with Victoria but I thought (at various times I have poked around the website) that they said they were national. I can't find anything that indicates that now and it may be that I inferred it from something perhaps. So my bad on that.

They do seem to be the prominent presence for Australian ME. And there is some very good material on the site as well. But that's true of AfME UK as well as we know.

I don't know the history of ME/cfs Australia SA. I do think in general that as charities whose function and purpose is to serve the ME community that we have the right to speak up in holding any charities to a reasonable standard of care toward the community. Where the line is on that standard is perhaps an issue of discussion.

 

[Simone]

Thanks for the clarification. I did know that they were a South Australia org that I believe merged with Victoria but I thought (at various times I have poked around the website) that they said they were national. I can't find anything that indicates that now and it may be that I inferred it from something perhaps. So my bad on that.

They do seem to be the prominent presence for Australian ME. And there is some very good material on the site as well. But that's true of AfME UK as well as we know.

I don't know the history of ME/cfs Australia SA. I do think in general that as charities whose function and purpose is to serve the ME community that we have the right to speak up in holding any charities to a reasonable standard of care toward the community. Where the line is on that standard is perhaps an issue of discussion.

They are one of the prominent ME/CFS orgs, definitely. You might be confusing ME/CFS Australia (SA), with ME/CFS Australia (which is a national organisation, consisting of an alignment of several state orgs). The naming is very confusing.

I agree with you that we should speak up and hold our orgs to a reasonable standard. I think it’s also tricky when these orgs are run by sick people and volunteers (ME/CFS Australia (SA) is run entirely by volunteers, most of whom are sick). I think finding that line is difficult.

 

[TiredSam]

Exercise leads to a release of “feel good” hormones that makes most people feel energized, clear headed, invigorated. ............

Ah yes, I remember that, which is why I did so much sport until I got ME. Imagine my surprise when I found out that it simply wasn't true any more once I had ME. In fact I was so surprised I thought "this can't be right", and I kept trying to make sport work it's usual magic for me, and ME just kept making me feel more and more shit until I got the message and decided to start living within my new limits and pacing instead. Then I started not feeling quite so shit. "How fascinating" I thought, "I bet people will be interested to hear about this". Imagine my further surprise when I found out that NOBODY WAS FUCKING LISTENING and that they just kept stubbornly repeating the same obvious premise which I had started with when I first became ill, and trying to build up a business selling it back to me.

After 5 years I am happy to report that my eyebrows have long since returned to their rightful position, but I still have some work to do before idiots like this stop pissing me off.

 

[chrisb]

@TiredSam Just to piss you off even more, you should know that my doctors were persuaded of this by at latest 1985. Even if Wessely et al were unable to see this for themselves it is odd that they do not seem ever to have communicated with any doctor, many of whom were of far greater experience, who could have told them differently.

 

[TiredSam]

@TiredSam Just to piss you off even more, you should know that my doctors were persuaded of this by at latest 1985. Even if Wessely et al were unable to see this for themselves it is odd that they do not seem ever to have communicated with any doctor, many of whom were of far greater experience, who could have told them differently.

Thank you. I am now thoroughly pissed off.

 

[Amw66]

Thank you. I am now thoroughly pissed off.

We had a rheumatology appointment last week - trying to rule out stuff as joint pain in particular is worsening. Lovely doctor but clueless. She had a physio in attendance, keen to promote an exercise programme. ......

 

[Sly Saint]

https://raisingchildren.net.au/guides/a-z-health-reference/cfs

interesting that they seem to assume it only affects girls(?)

"Your child should see a doctor if she seems extremely tired all the time, and her tiredness doesn’t have an obvious cause."

 

[inox]

https://raisingchildren.net.au/guides/a-z-health-reference/cfs

interesting that they seem to assume it only affects girls(?)

"Your child should see a doctor if she seems extremely tired all the time, and her tiredness doesn’t have an obvious cause."

That doesn't look good at all, especially since there for pre-puberty isn't a gender-difference. But after reading a bit further, I think it might be one of those sites/organizations that alternate between male/female wording in lack of gender neutral?

Your child’s individual management plan will probably focus on helping your child to manage symptoms so that he can get on with daily life as much as possible.