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

@Action for M.E. has launched Walk with M.E. 2019:
https://www.actionforme.org.uk/make-a-difference/fundraise/walk-with-me-2019/

It has received quite a lot of criticism on its Facebook page from those who feel it is inappropriate and sends out the wrong messages:

 

As far as I'm concerned, after the SEE M.E project, AfME can jog on.....

 

Really?

 

I don't see much of a problem here (other than that it is raising money for Action for ME).

 

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:

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.

 

Looks like our positive couple gets around a bit:

https://www.ignatianspirituality.com/24807/why-gratitude

https://www.penderelstrust.org.uk/adviceEmployer.php

Still, no need to use a picture of a real M.E. sufferer, it's not as if AfME actually know any.

 

I really felt my feet lift off the ground after reading that first link.

 

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).

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?

 

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 .....

 

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.

 

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 thought I remembered it in connection with Invest in ME:
http://ldifme.org/2019/01/09/walk-for-me-2019/

This started several years ago, for friends and family of people with ME to do sponsored walks.

@Graham has your family been involved with this?