The trouble is when you have one of the main ME charities actively promoting walking/running marathons to fundraise you have to ask what kind of message is this sending out. Can't find it now but last year one of their members 'an ME sufferer' was training for a marathon to raise money for AfME.
This is currently on their website along with a lot of others for presumably non-sufferers to fundraise (although they don't seem too bothered about who applies) :
Fundraiser of the week - Karen Risidore
February 17, 2017
Our fundraiser of the week is Karen Risidore, who is taking part in the Walk with M.E. event this year.
The idea behind Walk With M.E. is for participants to walk a total of 1 million steps between Wednesday 1 February and Thursday 11 May. Participants can be in teams of up to five people and can raise sponsorship via the
Walk With M.E. JustGiving page.
"For all of my adult life I experienced this exhaustion that I couldn't explain. I used to wake up exhausted however much sleep I got and would spend all day complaining how tired I was much to the annoyance of everyone around me. I used to say, one day you'll find there's something wrong with me and I'll say I told you so and you'll feel guilty.
"That day came in 2009. For years and years before that I had been to the doctors asking what was wrong with me, and they had run blood tests and told me there was nothing wrong. It was only after seeing a feature on 'this morning' with my dad about M.E. that everything suddenly clicked into place. After more tests I finally got the referral to an M.E. specialist consultant and he diagnosed me almost instantly. Even though it was a relief to finally get a diagnosis it has still been a struggle ever since that day. It's a largely unheard of and misunderstood condition. The usual response is that people think you are lazy. I've also had people tell me I can't possibly have M.E. or I'd be in a wheelchair or bedridden.
"I have three children and whilst I chose to have these children it does mean that to a certain extent even when I have a flair and feel like all I want to do is stay in bed, I can't as there would be no-one to take the children to school or care for them. That said there have been plenty of times I have returned to bed as soon as the children have left and only got up to pick the children up again
"With this challenge I'd like for people to become more educated about this dreadful condition but also raise funds for research so more can be learnt about this condition and how it could be helped or maybe even in the future prevented (if that's at all possible)."
by the by, also on their website: They will have a stand and be dishing out info at a neurology conference next month.
https://coursefinder.bmj.com/course-details/1055/one-day-essential-neurology/?porder=Neurology|Conference
A lot of newly diagnosed seem to be being directed to AfME as a matter of course, and I'm guessing similarly children (or their parents) will be being directed to AYME.
Sorry I know this is off topic and not related to the article being discussed but I think it all comes under the category of mis-information..............not wishing to sound like a certain leader of the free world recently described as 'a tangerine with a comb over'