Thoughts on Fundraising for ME

[Keela Too]

There has been some discussion about what is acceptable for an ME patient to do to raise funds. I copied views I put on facebook into a blog post here;
http://sallyjustme.blogspot.co.uk/2014/12/thoughts-on-fund-raising-for-me.html

 

[taniaaust1]

Hi, I just looked at this on your blog and wondering now what Ive missed hearing about. What physical challenges? What have been been suggesting and what ME org?

 

[Keela Too]

Various conversations have happened over the last months on the ME Association (UK) FB page.
The one I commented on is here:
https://www.facebook.com/1714114695...1411469583186/798021993588794/?type=1&theater

I then copied my response into a blog post. I wanted to open the discussion up, so that it is not about any individual, but rather to talk about the principles involved.

 

[Min]

https://www.facebook.com/permalink.php?story_fbid=792544564136537&id=171411469583186

There are a lot of people upset at the moment by the UK's ME Association announcing that a man with 'M.E.' will be doing a 900 mile walk for their fundraising, starting on Severe Awareness day.

Severe Awareness day was started by the 25% Group on Sophie Mirza's birthday (she died of M.E. after much abuse by the psychiatric profession).

Apart from the obvious question of how someone who can walk 900 miles has a diagnosis of M.E., many severe sufferers are very upset both at the misrepresentation of myalgic encephalomyelitis in the media that is bound to result from this, and the fact that it will detract substantially from the hard work the 25% group put into their awareness day.

We are already misrepresented as lazy, exercise shy malingerers in the press because of the work of the Wessely school of psychiatry, and treated as such by the medical profession. This does not seem an event likely to help the situation.








https://www.facebook.com/permalink.php?story_fbid=792544564136537&id=171411469583186

 

[taniaaust1]

Various conversations have happened over the last months on the ME Association (UK) FB page.
The one I commented on is here:
https://www.facebook.com/1714114695...1411469583186/798021993588794/?type=1&theater

Thanks. Without knowing what started this post it was like being told something had happened but not knowing what.

 

[taniaaust1]

https://www.facebook.com/permalink.php?story_fbid=792544564136537&id=171411469583186

There are a lot of people upset at the moment by the UK's ME Association announcing that a man with 'M.E.' will be doing a 900 mile walk for their fundraising, starting on Severe Awareness day.

Im quite shocked about this. Its falsely representing this illness.

 

[Min]

Im quite shocked about this. Its falsely representing this illness.

There was a lot of upset when someone with 'M.E.' did the toughmudder challenge to raise funds for them, but at least that was not on severe awareness day like the planned 900 mile walk.

 

[taniaaust1]

There was a lot of upset when someone with 'M.E.' did the toughmudder challenge to raise funds for them, but at least that was not on severe awareness day like the planned 900 mile walk.

***wonders if that was possibly done to take attention away from the other***

 

[Keela Too]

In fairness, some of the 900 mile walk will be done on a mobility scooter... Not that that makes much difference to the overall scale of the challenge.

However, I think it is best though to leave individual events out of this discussion (even though it was this event that helped prompt my blog post) and to talk now about the principles of using physical challenges for fundraising for ME.

Could it ever be done in a way that does not put out the wrong message?

How should charities react when a patient offers to do a physically challenging fundraiser?

Can sufficient funds be raised without accepting donations from this type of event?

 

[Wildcat]

.
The ME Association has a long history of taking funds raised by people who say they have ME and do extreme physical stamina/endurance challenges whilst claiming to be 'raising awareness' about how seriously debilitating ME is. Marathons, the 'Toughmudder' 12 mile obstacle course, demanding tough hill walking routes .... physical challenges that are beyond many healthy people.

Each time, ME patients, including MEA charity members, tell the MEA that they are horrified at how public perception of ME is further damaged by publicity for the displays of physical exertion and endurance entailed in doing these extreme challenges for fundraising. Publicity is sought for such exploits, and the people doing them say things such as Yes they have ME but they don't let it hold them back....

The MEA loses members because of it, potential members are put off, and endless patients are distressed by the possibility of their friends and relations, doctors, DWP assessors, reading about ME sufferers doing such demanding physical challenges, leading to perceptions that ME sufferers just need to make more effort etc.

.
.

 

[Anabel]

Keela Too said, "In fairness, some of the 900 mile walk will be done on a mobility scooter... Not that that makes much difference to the overall scale of the challenge." (I don't know how to do the thing where a previous comment shows up in beige/yellow. )

Just to clarify - The one man who is doing it is walking the entire 900 miles. The other one is walking for a mile and riding a scooter for a mile and on and on for a total of 450 miles of walking.

 

[Keela Too]

@Anabel - are both these walkers ME patients?

 

[Anabel]

@Keela Too - Yes, they are. The one who is walking 450 miles and riding a mobility scooter 450 miles is 62 and the one who is walking 900 miles is 40 years old.

 

[Min]

Those of us changing from Disability Allowance to the much stricter PIP this year do not need the impression given to media that we can undertake marathon walks etc if we just put our minds to it. Very many of us struggle to walk very short distances, and some cannot walk at all.

 

[Valentijn]

@Anabel - are both these walkers ME patients?

One says he has no problem with aerobic activity, but can't do weights and such. I rather doubt he fits the CCC or ICC definitions.

 

[Tuha]

I think what is also important - it´s the way how they will do it. During how many days do they want to do that challenge?
I think if you have mild/moderate ME - you can manage it if it´s well organise.For example to do 10 km a day during 90 days when you have a team around you and you are just walking with breaks and you dont care about anything else.

So like this it´s maybe possible for a mild/moderate ME patients - but I agree with so much controversial in our field it´s not the best publicity

 

[Tuha]

I already thought many times about ME fundraising activities which could bring much more money for ME research.
Some weeks ago I read an article about a teenager who makes about 10 mil. USD a year through social media/ network. I forgot the name of that social media/network but he is just doing short videos (around 10 seconds) and he is making money from publicity. I thought that it will be beuatiful videos but he is just farting, burping and the things like this. The key is that he has around 3 million followers. Also in the article was written that many people try to do simillar things but only few can make really money of it.
I know that 3 million followers sounds like a huge number and like an impossible aim but I think the key is to get few thousand of followers/patients who are really motivated to push it. For example if we could do such a network of patients personally I could bring at least 20 other persons (family, friends) to watch each video. So with a multiplication efect and a bit of luck - maybe we could get there. Today the people are posting/ sharing/ sending many stupid videos like crazy. I dont know too much how those social media/networks work but maybe we could find some way how to do it and maybe with a bit of luck we can be our own funders of ME research.
What do you think about this stupid idea?