Action for M.E. Walk with M.E. 2019

I mean people with Alztheimer’s or late stage cancer don’t tend to do sponsored walks raising money for those charities, it’s their caregivers or family. Don’t really see much wrong with this to be honest
 
It seems reasonable as a concept. My main issue might be there was another established “walk for ME” that fundraises for IIME AND meruk I think.
 
I think it's marvellous, I feel encouraged and supported to leave my sofa and show the world that with the right help and support I really can go for a long walk. Thank you AfME.

Apparently this is one of a series of events, here's the next one:

Whoever you are, wherever you are, help us Smoke with Lung Cancer.

Smoke with Lung Cancer is a sponsored smoke with a twist: everything is done as a team. This means you can take part if you would like to, whatever your remaining lung capacity.

Some people with lung cancer are unable to take even a few puffs. By working as part of a team to reach the goal of one million cigarettes in 100 hundred days, anyone can take part in Smoke with Lung Cancer.
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This event fits in with AfME's current position (we can be helped and supported back to work / going for walks / whatever). It doesn't fit in with what M.E. sufferers can do, or should be aiming to do, even with help. But afterwards I'm sure there'll be feel-good stories about how surprised some people were to find that they could have a great day out and do more than they thought. If we could walk, or if our carers had time to go for a walk, we'd have been marching up and down like AIDS activists for the last 30 years.

In the current climate and with AfME's current shenanigans I would avoid this walk like the plague. They need to start listening to patients instead of organising "look, we can do it together" type walks. And who's in the "team" anyway? It doesn't say "families" or "carers" anywhere. Could be trainee therapists practising their new skills from the AfME booklet for all we know.

I'm not well enough to go for walks. Thanks for organising one anyway and trying to persuade me otherwise, that with help and support from a team it's do-able. Even if it was, I'd rather use the energy for something else like sitting in front of my computer and getting some work done. And for M.E. sufferers more ill than me, which is most of them, it absolutely isn't.
 
A big assumption lots of people make is that just using a wheelchair magically makes taking part in something like this possible or even enjoyable for pwME.

My limited experience from the rare occasions when I go out (dentist and medical appointments only) is that being pushed along in a wheelchair, particularly on ground that is a bit uneven, is almost as exhausting and pain inducing as walking.

I think suggesting to someone who has ME that they participate in something that emphasises how little they can do is cruel.

Why not sponsored resting. Sponsor the healthies to spend a day in bed in a darkened room in a heavy and uncomfortable 'pain suit'. Perhaps give them a drug that induces nausea and headaches too...
 
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Love that idea @Trish!

I agree it is insensitive in the extreme and cruel, it is bad enough not being able to walk properly without other people showing off how they do it in the name of this illness!! It is also worrying and weird that they seem not to realise that we would have that response....

I totally agree about the misconceptions regarding using mobility scooters and wheelchairs. The bumping is unbearable and it is very difficult to sit up for any length of time, not to mention the cognitive exhaustion and pressure on joints, Orthostatic intolerance etc. . The concept of being part of a team is enough to exhaust most of us...
 
Personally, I'm not that keen on the whole 'do something pointless to raise money for charity' thing, but it's seems like it's a common approach that is used to raise money for other charities. Lots of people seem to like doing something a bit pointless as a way of raising money. Are the people here who are unhappy about this particular project saying that there should be no sponsored activities for ME charities that could not be done by even those severely ill with ME? When we've been raising concern in other threads about how little money is raised tto help research into this condition, is there really a view that we need to cut ourselves off from a conventional form of charity fundraising?

(There's also the issue of Action for ME really not being a useful recipient of funding, but I think that's a different matter).

Trish said:
Why not sponsored resting. Sponsor the healthies to spend a day in bed in a darkened room in a heavy and uncomfortable 'pain suit'. Perhaps give them a drug that induces nausea and headaches too...
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I get the impression that the whole 'sponsored' thing is normally successful when it's about creating some sort of shared community effort. The ALS ice bucket challenge wasn't about inducing the symptoms of ALS, but giving a reason for a mild ordeal of the sort that people can enjoy overcoming.

Am I completely missing something here?
 
Esther12 said:
Are the people here who are unhappy about this particular project saying that there should be no sponsored activities for ME charities that could not be done by even those severely ill with ME?
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That is a rather good point.

Unfortunately, it is AfME. That's the trouble - instead of advertising for a sponsored walk in aid of all the severely ill who can't, or those who can't walk as much as they'd like, or need to, it's just do a walk. Even if it's just a little bit ( we'll just ignore the fact even just a little bit may leave you unable to wash or feed yourself for a week).

For me, it's not just this in isolation. It's their perpetual assumption that the mildest of ME sufferers are the typical sufferers, ignoring the fact that those mildest could easily become severe. Failing to address the dodgy advice they give that puts those people at risk.

Failing entirely to understand and communicate that ME is a serious, life altering in the long term, possibly life destroying and it needs to be taken seriously.

This is just yet another straw .....
 
Esther12 said:
I see that's a problem!

I think it's best to focus criticism of AfME on the areas where they deserve it most though, to make sure it's clear what the problems that they urgently need to change are.
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Fair enough. This is part of my criticism of where they are though. They colluded with the PACE trial, their advice pages are poor and do not make it clear that pushing through harms and that increasing activity may well cause long term damage. Their recent toolkit, advising DWP, seems to claim that those returning to work can with a change of attitude and expectation, build up and increase their hours.

I think for me it's no longer about the bits that AfME get wrong, because we're not all going to agree with everything. It is AfME's fundamental approach based on how they seem to view the condition that is completely wrong.

In my opinion this fundraiser reflects that. So that's where my criticism comes in. All along they are promoting pushing patients while they make claims to be supporting them.

I wouldn't worry too much about picking the choicest arguments with AfME because they clearly don't listen to any of them anyway.
 
When you read further on their page, it says that this fundraiser was designed by people with ME, and it says that people need to make sure they don’t exceed their energy envelope. For me, it would have been a better fundraiser if it was just family/friends walking for people with ME. T-shirts could then say ‘I’m walking for my family/friend who has ME, because they can’t do it...’ or something catchy along those lines....

I think the idea of a sponsored walk for people with ME to do is a poor idea because it overlooks the issue of the cost involved.
 
I have to admit I took part in the race for life last summer. I walked about 1km which is a lot for me. I do this because I have lost a close friend to cancer. I had to lie down for 45 minutes immediately I got back to base and it took me about a week to get back to normal. The people around me were so focussed on doing the 5k walk and only one person walked slowly with me until I turned back. I’m still going to take part this year in some way but I need to think VERY HARD about what that will be. It will not be walking 1k slowly without stopping that’s for sure.
 
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