Recently there has been much talk on ME groups about ME patients doing physically challenging fund-raisers. I expressed my opinion on Face Book and thought I'd copy it here:
"Personally I am as uncomfortable with anyone who has ME (or previously had ME) doing a physical challenge to raise funds for an ME charity as I would be if:
- a type one diabetic decided to do a cupcake eating marathon
- a lung cancer sufferer decided to do a sponsored chain smoking event
- a coeliac was sponsored for eating a normal loaf of bread
- an epileptic was sponsored to spend an hour in a room with strobe lighting
It is the fact the sponsored event is for DOING the very thing that causes HARM to those individuals is where the problem lies.
The fact that:
- the diabetic might be going to shoot insulin for his sugar marathon or,
- the lung cancer sufferer might be using ultra filtered herbal cigarettes or,
- the coeliac might be going to have his stomach pumped or,
- the epileptic might have a crash team on standby....
..... is totally irrelevant to the media who will use the shock value of the situation.
Considering that the media already likes to cast a slur on the ME population, preferring to highlight only our fatigue, I really feel very strongly that an ME charity should not help this media-spun "fatigue-only (but you can overcome it if you just try)" perception in ANY way!
And most especially not, by suggesting that physical challenges are likely to be harmless to an ME sufferer.
Sorry for being blunt, but that is how I see it.
The way the ££ is raised is important.
PS I have NO problem with healthies doing physical challenges.
My own family have run a marathon relay, and done a big cycling event to raise funds, and I (the ME sufferer in the family) was not physically challenged during the events.
Suggestions for ME patients:
- A sponsored month off sugar/milk/bread or whatever individual decides would be a challenge for them.
- Sponsored silence
- Sponsored haircut, hair dying or beard shaving/growing
- Sponsored month with no TV or no films or no Soaps
- Sponsored sleepathon or Pyjama days.
- I loved the Blue Tea Party Idea.. helped by others who are well of course
ME patients can also do a load of awareness raising for the healthy peeps who are doing those marathon events."
Do others also feel this way?