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Poll - should ME charities accept donations from physical challenges?

Should ME/CFS charities accept donations raised by physical challenges


  • Total voters
    32

MeSci

ME/CFS since 1995; activity level 6?
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Please select one response regarding people who say they have ME/CFS and one response regarding people who say they have recovered from ME/CFS.

If you are undecided over either, no need to make selections - you can select just one response rather than two.

The questions relate to physical activity of a kind which people with ME/CFS commonly cannot perform and/or find harmful, involving pushing through fatigue.

You should be able to change your vote if needed.

I hope I've organised it right!
 

eafw

Senior Member
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Hi Min, if you were to ask should ME charities *publicise and promote* fund raising physical challenges (by people saying they have ME/CFS) then I would say a very definite NO.

But in terms of simply accepting donations ? If people are raising money on their own and donating privately without a big giant fanfare then it's not so bad.

It's when the charity becomes an active supporter of these events, putting the charity's name to it, running articles on the website and so on - that is the sort of publicity which does harm and undermines other efforts to recognise how serious this illness is.
 

MeSci

ME/CFS since 1995; activity level 6?
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Hi Min, if you were to ask should ME charities *publicise and promote* fund raising physical challenges (by people saying they have ME/CFS) then I would say a very definite NO.

But in terms of simply accepting donations ? If people are raising money on their own and donating privately without a big giant fanfare then it's not so bad.

It's when the charity becomes an active supporter of these events, putting the charity's name to it, running articles on the website and so on - that is the sort of publicity which does harm and undermines other efforts to recognise how serious this illness is.
I'm MeSci, not Min :)

Do you want to start another poll on the other question? I think it would also be interesting.
 

RustyJ

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I would like to make a point about Q 4 which should be considered, but may not have been discussed. The issue with people who say they have recovered is that they may not have had ME in the first place. Invariably few people recover to the extent that they can complete rigorous physical exercise.

If this is the case, many of the arguments behind Q 2 are applicable for Q 4
 

MeSci

ME/CFS since 1995; activity level 6?
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I would like to make a point about Q 4 which should be considered, but may not have been discussed. The issue with people who say they have recovered is that they may not have had ME in the first place. Invariably few people recover to the extent that they can complete rigorous physical exercise.

If this is the case, many of the arguments behind Q 2 are applicable for Q 4
That's right. It's also the case that some people who think they have recovered are in fact only in remission.

So I used wording that will, I think, normally reflect how much is actually known by a charity about an individual, viz. what the person says. They are unlikely to know whether the person was accurately diagnosed or whether they have really recovered.
 
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RustyJ

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So I used wording that will, I think, normally reflect how much is actually known by a charity about an individual, viz. what the person says. They are unlikely to know whether the person was accurately diagnosed or whether they have really recovered.
Some of the orgs supporting cfs or fatigue, rather than ME, do so for very suspect reasons. This whole premise is fraught with pitfalls. Honesty may come second place. If they are masking their political and commercial links, as there is ample evidence to show, I think it would not be beyond them to stack the deck. So even your amended wording leaves a very large loophole for them to work with.
 

MeSci

ME/CFS since 1995; activity level 6?
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So even your amended wording leaves a very large loophole for them to work with.
Not sure what you mean by 'amended wording'. I haven't changed the wording of the poll. I thought I'd better clarify that in case anyone worries that they may need to revise their answers due to the wording being changed.
 

RustyJ

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Not sure what you mean by 'amended wording'. I haven't changed the wording of the poll. I thought I'd better clarify that in case anyone worries that they may need to revise their answers due to the wording being changed.
Sorry, I misspoke, tho, I didn't mean it to mean anything to you personally. I meant to say that even with the best intentions, your wording left a loophole.
 

MeSci

ME/CFS since 1995; activity level 6?
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I see the ME Association are touting for fundraising runners here.

I am concerned at the lack of caveats, and somewhat astonished that they consider a 10k run
a fantastic introduction to running and getting fit.
and say:
If you aren’t fit now, but would like to be, then a 10k is a great place to start
They do go on to say:
especially if you start training NOW!
But I couldn't run anywhere near 10k even when I was fit and healthy.
 

CantThink

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I see the ME Association are touting for fundraising runners here.

I am concerned at the lack of caveats, and somewhat astonished that they consider a 10k run


and say:


They do go on to say:


But I couldn't run anywhere near 10k even when I was fit and healthy.
My initial response: :eek:

I went and had a look. It says How you can help... And then... run in the 10k. It doesn't really make it obvious who that's aimed at (healthy people). When you go on their actual introductory: How can you help page, it shows their fundraising attempts are aimed at various people (depending on the activity or whatever). If I just landed on the page you linked and knew nothing of M.E., I'd think that sufferers were a bunch of fit people!

I think 5k would be more 'introductory'. :cautious:
 

MeSci

ME/CFS since 1995; activity level 6?
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My initial response: :eek:

I went and had a look. It says How you can help... And then... run in the 10k. It doesn't really make it obvious who that's aimed at (healthy people). When you go on their actual introductory: How can you help page, it shows their fundraising attempts are aimed at various people (depending on the activity or whatever). If I just landed on the page you linked and knew nothing of M.E., I'd think that sufferers were a bunch of fit people!

I think 5k would be more 'introductory'. :cautious:
and still inappropriate for some people. I've never been able to do endurance sports, except possibly cycling, but I never did that as a sport - just for leisure and getting around. Even swimming a length exhausted me. But I was an excellent sprinter and was often in the first three or so to finish in races at junior school.
 

CantThink

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and still inappropriate for some people. I've never been able to do endurance sports, except possibly cycling, but I never did that as a sport - just for leisure and getting around. Even swimming a length exhausted me. But I was an excellent sprinter and was often in the first three or so to finish in races at junior school.
Running on tarmac/roads would never be my thing (even if I got better or had never gotten ill). I am not built for running, and I just think it's weird running on roads instead of countryside... Hard surface, boring and I just can't see any enjoyment in that.

On a side note, my sports were riding my pony, cycling for leisure, climbing trees (a sport haha), walking the dog and dancing ballet and tap. Sometimes I ice skated too. I just liked those type of activities... Maybe more creative or mentally satisfying to me so somehow. I hated all team sports except netball which was tolerable.
 
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MeSci

ME/CFS since 1995; activity level 6?
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Running on tarmac/roads would never be my thing (even if I got better or had never gotten ill). I am not built for running, and I just think it's weird running on roads instead of countryside... Hard surface, boring and I just can't see any enjoyment in that.

On a side note, my sports were riding my pony, cycling for leisure, climbing trees (a sport haha), walking the dog and dancing ballet and tap. Sometimes I ice skated too. I just liked those type of activities... Maybe more creative or mentally satisfying to me so somehow. I hated all team sports except netball which was tolerable.
I was very good at rounders (related to baseball). I could hit the ball a long way and run fast in tight circles. I would have liked to play tennis but am too short to see over the net properly! I much prefer being out in nature too, and was also an avid tree-climber. I can't see that as a fundraising activity though unless it was extreme, like very tall/difficult trees or many trees in a row. I prefer to do things at a natural pace.

Weirdly I was also good at high-jump despite my lack of height. Two of us represented the school at inter-school sports days - little me and my very tall friend. :lol: She would almost walk over the jumps.
 

justy

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I don't think from the link above that the ME association are asking PWME to take part - many fantastic healthy people raise money for our M.E charities and should be roundly supported. I think last year Invest in ME raised quite a large sum from people travelling to as many football grounds in so many days - something that would be impossible for many PWME, but we didn't criticise them!

ALL fundraising is good for our causes if it brings the goal of recognition and treatment nearer. I myself had a very long remission for a number of years and was able to do sponsored swims and other activities. It wasn't overdoing it that caused my severe relapse, but measles.

I think there could have been an option for ' I dont care who fundraises and how' on your poll.

Please don't everyone jump up and down and start saying its not good to portray PWME s being able to do physical challenges - I know the arguments and have thought about them already. People should just do whatever they want to do as far as I am concerned.
 

MeSci

ME/CFS since 1995; activity level 6?
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I don't think from the link above that the ME association are asking PWME to take part - many fantastic healthy people raise money for our M.E charities and should be roundly supported. I think last year Invest in ME raised quite a large sum from people travelling to as many football grounds in so many days - something that would be impossible for many PWME, but we didn't criticise them!

ALL fundraising is good for our causes if it brings the goal of recognition and treatment nearer. I myself had a very long remission for a number of years and was able to do sponsored swims and other activities. It wasn't overdoing it that caused my severe relapse, but measles.

I think there could have been an option for ' I dont care who fundraises and how' on your poll.

Please don't everyone jump up and down and start saying its not good to portray PWME s being able to do physical challenges - I know the arguments and have thought about them already. People should just do whatever they want to do as far as I am concerned.
What worries me is the way this particular piece of publicity is actively urging people to do it, even if they are not fit. Some people will be highly motivated as a result, and also may feel emotionally pressurised, so that even if something transpires that it is not suitable for them after all, they may feel obliged to do it, or feel guilty or a failure. They might have told people they are going to do it, and then be too embarrassed to back out.

I think we all know how strong emotional and social pressure can be, as we are very prone to over-exerting ourselves and suffering harm as a result.

I consider that all the details - including caveats and health warnings - should be given on the same page as the encouragement, to balance it, so that people can think carefully and make informed decisions from the start. It is a health charity, after all, so should behave responsibly at all times.
 

MeSci

ME/CFS since 1995; activity level 6?
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The BBC Radio 4 programme Inside Health this week had an item on excessive exercise, with a particular focus on marathons. There is a transcript here. I think it's quite balanced.
 

MeSci

ME/CFS since 1995; activity level 6?
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I have just received a direct email from the MEA about the BUPA 10k run. I hope it is OK to reproduce it here.
Bupa London 10,000 on 25 May 2015.

At the end of May, our team will be running across the heart of London. If you’d like to join them – or know someone who would – we still have some places left for this amazing 10k race.

It starts on The Mall and finishes opposite Buckingham Palace. Runners pass many of London’s famous sights including Nelson’s Column, St Paul’s Cathedral, Mansion House, Bank of England, Tate Gallery, the London Eye, Big Ben and the Houses of Parliament, and Westminster Abbey.

We already have a number of runners signed up – including Rhiannon Payne (pictured at last year’s finishing line with her mum) and Carrie Smith (below).

But we still have some places left and it would be brilliant to have a full team of runners representing ME Association in London.

If you run for The ME Association, we’ll offer you a reduced entry fee, MEA T-shirt and full fundraising and moral support. All we ask is that you fundraise for us in return.

If you would like to run for the ME Association, please get in touch with our fundraiser Helen Hyland as soon as possible. Entries close on Friday 10 April at 5pm.
Please note the direct appeals to the recipient of the email, in this case me:
If you’d like to join them
If you run for The ME Association, we’ll offer you a reduced entry fee, MEA T-shirt and full fundraising and moral support.
All we ask is that you fundraise for us in return.
I'm afraid I don't find this acceptable. Again, there are no warnings or caveats with regard to pwME or other health conditions. People who find it hard to say no - and I suspect that many pwME have this tendency - may be persuaded to take part and cause themselves serious harm, or at least try to take part and suffer distress at finding that they cannot.

Please, MEA, be upfront and unequivocal in relevant publicity that taking part in such activity is likely to be dangerous for pwME.

To quote the subject line of your email:
Tell it like it is