M.E. and exercise – when will they ever learn?

[MeSci]

But with exercise and people who have had, or still have, ME, very little can be said for sure. I'm opposed to people being told they should increase/decrease/stabilise/record/anything the amount that they do. There's just not good enough evidence here to act as if we can know what is best for someone else.

Maybe some of the people who do these sorts of things will damage their health? Maybe some will benefit? Who knows. It should be up to the individual involved to decide what they want to do for themselves, and I would like to try to support other patients in doing what they want with their life.

If a person decides that they want to do this sort of fund-raising event then I think it would be unfair for a patient charity to refuse to take those donations.

As I have said before, people are free to do what they want privately if they think it will help them.

But I have come across numerous cases of people who have been harmed by overexertion - often permanently - and this includes people who thought they were recovered. I personally have ended up in hospital from overexertion, and it was near-life-threatening.

So let people do what they want, but NOT for a charity for an illness for which there is a KNOWN risk from what they are doing.

They can do something else, that does NOT threaten their health, to raise funds, and overexert to their heart's content in private. Something that does NOT risk giving false and harmful information to other patients and those who are supposed to care for them.

 

[Esther12]

So let people do what they want, but NOT for a charity for an illness for which there is a KNOWN risk from what they are doing.

What do you mean by 'known risk'? Of the people who have done this sort of fund-raising, do we know roughly what percent have gone on to suffer health problems because of them?

To me it seems that there is not good evidence here, and that there's very little we truly know.

 

[lansbergen]

Nobody has the right to promote extreme behaviour that can harm other paients put under the same umbrella.

But with exercise and people who have had, or still have, ME, very little can be said for sure. I'm opposed to people being told they should increase/decrease/stabilise/record/anything the amount that they do. There's just not good enough evidence here to act as if we can know what is best for someone else.

Maybe some of the people who do these sorts of things will damage their health? Maybe some will benefit? Who knows. It should be up to the individual involved to decide what they want to do for themselves, and I would like to try to support other patients in doing what they want with their life.

If a person decides that they want to do this sort of fund-raising event then I think it would be unfair for a patient charity to refuse to take those donations.

 

[Esther12]

Nobody has the right to promote extreme behaviour that can harm other paients put under the same umbrella.

I'm not entirely clear what that mean, but I think that we all have the right to decide to do a charity walk or fun run if we think that is the best thing for us, as an individual, to do.

 

[MeSci]

What do you mean by 'known risk'? Of the people who have done this sort of fund-raising, do we know roughly what percent have gone on to suffer health problems because of them?

To me it seems that there is not good evidence here, and that there's very little we truly know.

You are right that we cannot quantify this - no one has carried out research on this specific issue as far as I know. But on PR alone there are numerous reports of people saying that they have been harmed by over-exertion, including some from people who thought that they were recovered.

This thread about GET reports a survey showing more people harmed than helped by it.

And a number of research papers and threads about 2-day CPET testing provide a physiological basis for such harm.

I don't think we should just watch and wait to see how many ME/'former-ME' people are specifically harmed by raising money for charity through extreme physical exertion before coming to a preliminary position that it should be discouraged.

We can never know how much indirect damage such exploits cause through more ME people being encouraged to overexert, and through the strengthening of the already-widespread myth that exercise is the appropriate prescription for ME.

 

[Esther12]

You are right that we cannot quantify this - no one has carried out research on this specific issue as far as I know. But on PR alone there are numerous reports of people saying that they have been harmed by over-exertion, including some from people who thought that they were recovered.

This thread about GET reports a survey showing more people harmed than helped by it.

And a number of research papers and threads about 2-day CPET testing provide a physiological basis for such harm.

I don't think we should just watch and wait to see how many ME/'former-ME' people are specifically harmed by raising money for charity through extreme physical exertion before coming to a preliminary position that it should be discouraged.

We can never know how much indirect damage such exploits cause through more ME people being encouraged to overexert, and through the strengthening of the already-widespread myth that exercise is the appropriate prescription for ME.

Right, but the people who want to do this sort of fund-raising are a fairly unusual sub-group. I know I don't!

I'd be strongly against charities encouraging this sort of thing, but I've not seen anything like MEA saying 'Come on people, we need you out doing fun-runs to raise us money' - that would be totally inappropriate. But where an individual has themselves decided that they want to raise funds in this way, I think it would be unfair for a charity to refuse to accept them because of the ill effects many other patients have reported from GET, over-exertion or exercise.

Lots of things can be harmful to different people in different ways. People do die on marathons or other fund raising tasks. It's up to individuals to make these decisions about their own lives for themselves.

 

[Keela Too]

If a person decides that they want to do this sort of fund-raising event then I think it would be unfair for a patient charity to refuse to take those donations.

I think a charity has a right to choose for themselves from where they accept funding.

e.g. A vegetarian charity might refuse to accept donations from a butcher.

They aren't stopping the butcher from selling meat, but they are making a choice by not accepting a donation raised in a manner that they do not wish to condone....

 

[Esther12]

I think a charity has a right to choose for themselves from where they accept funding.

Right. Personally, I'm glad that MEA does not reject funding raised from activities like these.

 

[Keela Too]

Right. Personally, I'm glad that MEA does not reject funding raised from activities like these.

And on that note, we'll agree to differ.

 

[jimells]

I cannot disclose anything further at this point but there will be some important media coverage of ME/CFS before Xmas in a very well known and respected publication. And this is not a recovery story.

At last, a reason to count down the days 'til Christmas!

 

[jimells]

Personally, I think this could be avoided, if charities stopped promoting these events, and if they made it clear that they would prefer funds to be raised in another manner.

Absolutely. What's wrong with, I dunno, just giving the money? What's with all the "I'll only donate if you in engage in some strenuous/unpleasant/painful activity"

When people donate to the Salvation Army outside of stores, they don't give only after the bell ringer rings the bell a certain number of times! It doesn't seem very charitable to me, it's more like buying a service, in this case perhaps some entertainment for the donor, waiting to see if their person will make it 'til the end.

I know it's tough raising money; I've been involved in non-profit organizations so I'm familiar with some of these issues. Everybody already feels like there are a dozen hands in their pockets all the time, yet there are more and more charities, all desperate for cash, many trying to fill in the holes left by the onerous policy of austerity for working people and fabulous wealth for a few. I don't have any answers for the fundraising problem. But these physical challenges by patients/former patients aren't it.

 

[MeSci]

I have started a poll on the subject of physical challenges to raise funds here.