Friday, 12 December 2014

Thoughts on Fund-Raising for ME Charities

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
etc. etc.

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?


  1. I agree that it is unwise to promote M.E. people do anything of a physical nature even for a great cause. 25 years ill, and I have the experience of understanding that payback can come from the best of intentions. All the people who are watching the fundraising will see is the physical event... they won't see the months or possibly years the toll that physical event could take.

    Post Exertion issues aren't something that "sometimes" happens to me (or someone with an M.E. diagnosis). Post Exertion issues occur EVERY TIME for me. For those who are newly diagnosed, it's important to understand the oxygen exchange system is dysfunctional so anything that pushes outside the small envelope of energy we have has real consequences. Those consequences may seem trivial at the time, but as Dr. Montoya points out that anytime we get outside the envelope, we have to start over in rebuilding our stamina.

  2. I absolutely agree with you that it is counter-productive for PWME to do something that would challenge the average healthy person.
    I can see that it might be an idea for lots of us to do 'my marathon' - to be sponsored to do to our SAFE limit. For some, that might be to sit up in bed for 5 minutes, for others, to walk to the front gate. That might not raise as much money, but it might raise some awareness!

  3. I think, even if a person is well enough to do exercise for a fund raiser, they shpuld not do it and the charity should not allow it. We are in a PR battle and personal battles with the likes of Wessely, the general public, our families and friends who have bought the lies of GET and CBT. Whether a ME patient can do it or not is irrelevant. They ought not to do it because of the harm it does our causes and the physical harm it can bring to them.

  4. Valid & excellent points. I'm glad you have written about this contested topic. Charities should have a long hard think about what they want and how to achieve it. Sadly, accountability on their part is a very rare thing. Thanks, Sally (from Claudia Gillberg)

  5. I absolutely, totally agree with you, Sally. This kind of nonsense, on the part of charities (the one I know about which is promoting this, right now, specifically), is so ridiculous that it makes my blood boil. I've already written too many comments about it and my brain is fried.

    1. Praising the people who are doing these physical challenges - because they're donating money to the charity! - is dangerous and irresponsible. A charity defending the fact that the person is doing it because he/she feels 'up to it' is nonsense. Any so-called ME charity which does this has no clue about Post Exertional Neuroimmune Exhaustion or, even, that the person/people could get much worse, permanently.

    2. It gives the completely wrong impression about M.E. to families, friends, neighbours, anyone in the medical profession, case workers, assessors, the media and the general public. No one with M.E. needs to be told "He could walk 900 miles, why can't you go to work, go to school, clean the house, get out of bed, etc." That would happen. PWME are already stigmatized and hear that kind of stuff all the time. However, physically challenging fund raisers (not the ones done by healthy people), especially if they are covered in the press, would make the comments even worse.

    The whole idea is beyond belief and idiotic. If ME charities can't figure out ways to raise money other than by letting PWME put themselves at great risk, they have no imagination or brains.

    Until we get rid of the term 'CFS', neither we nor the charities really know what these people have. However, since they're calling themselves M.E. charities, they ought to be far more responsible and not promote these kinds of activities. We don't need people who have been newly diagnosed with M.E. thinking that they should be able to push themselves through it - and that's what this kind of thing is telling them.

    Linda Mills

  6. Dietary changes, hair dye and overstaying your time in bed can worsen things too ;)

  7. Couldn't agree more. It's all about perceptions.

  8. Hi Sally; Great post. Been thinking about it ever since you tweeted.

    Should ME patients do physically challenging fund-raisers?

    This is a difficult question for me to answer.

    Activity with M.E. is reckless. Over-exertion can send a person with mild M.E. down to severe. I think a single event could cost a patient a year in bed, in the dark, in pain. I strongly agree M.E. charities should not encourage this form of fund-raising.

    I don't, however, think physical activity fund-raising will always confuse the public. In my experience some people look for reasons to dismiss M.E. or to blather on about "pushing the limits" of the illness. Others listen and take the (really very small) amount of time required to understand the problem: (M.E. patients get ill after any and all mental or physical exertion and are isolated, trapped and punished daily by this simple fact). I think reception therefore is down to the audience: sympathetic folk will remain supportive and unsympathetic folk will continue to be jerks.

    My difficulty with the issue overall is personal and what follows is not a recommendation to others.

    30 years in and I am absolutely used to blowing my energy budget & therefore my long-term health to achieve certain short-term goals. It's a horrible calculation but there it is. I can therefore absolutely understand why someone with M.E. might consider a physical challenge as a fund-raiser. I would consider it. I would consider it with a very good understanding of the outcome. M.E. is disempowering and even though such choices might appear to be profoundly dumb to others, I would like to retain my right to make "dumb" choices.

    Eg: M.E. is about energy output, both physical and mental. It doesn't matter whether you are running a race, adding a column of figures or composing text: if you're working; it's going to hurt afterwards. Sometimes it will hurt a lot and for a long time. Yet, if I were not allowed to make myself ill, we'd never have met: Tweeting #MEcfs is work; Tweeting makes me ill. I think I am not alone in making this choice.

    So. I absolutely agree physically challenging fund-raisers are dangerous things for M.E. patients to do. This fact alone wouldn't necessarily stop me if I thought the return was worth it. Make of this what you will. ;)



  9. Great post Sally, It is very sad that these people with M.E should even have to continplate it, let alone partispate. But don't you think it sending out a message here, it just show's how desperate M.E patients are to find a cure. They know there is very little funding or support for this illness and can't bare to just wait around for a miricle. So they are willing to risk 'everything' to find a way out of the nightmare. It really should not have to be like this for the patients. Some sufferers may see it as a way of trying to survive, sadly at a cost to their own health. In a perfect world M.E sufferers should be pacing them selves and being kind to their bodies with diet, rest, relaxation, meditation, gental yoga and massage ect. There are times like this that these people feel if they dont help themselves no else is going to do it for them. As the general public don't understand how this illness affects the patient. M.E reaserch just dosen't get the same support as Cancer ect. It is so hard being a M.E paitent, you need to be so strong at times when everything feels hopeless. Its like being between a rock and a hard place. Research needs to be done before people will give their support `~ but we need their support to get the reasearch done!

  10. Thank you to everyone who has commented on this emotive subject. I fully understand the desire to do something for the cause, and totally appreciate the right of individuals to challenge themselves how they see fit.

    My issue is with the charities that accept funds raised through these potentially harmful to the patient challenges.

    Again thank you all for replying.