Muddying murky waters

As we head in to ‘fundraising season’ I have a plea for people with M.E and the charities who support them.

I have to be very careful about taking issues like this on. But it doesn’t feel right to not say anything.

We don’t have the ‘luxury’ of having a well understood illness. So at this point, we still don’t have the ‘luxury’ to not give out extremely clear messaging. What then, does it do when people with our diagnosis participate in endurance events, like marathons, in the hope of raising awareness of M.E.?

I do understand that this will open up the topic of questioning whether someone can have M.E. or not. Although I understand that all issues are linked, in this moment, debates about the accuracy of someone else’s diagnosis is not what I’m interested in. My issue is that they are doing a fundraising event so at odds with the diagnosis they’ve been given, and how utterly detrimental to M.E. awareness and advocacy that is. It’s like saying you’re allergic to carrots and then doing a sponsored carrot eating contest, no?!

Yes there are wild variations in severity, but exercise/activity intolerance is the defining feature. What exerts a human body more than a marathon…

The majority of people without M.E. can’t run a marathon or even a 10k. How then does it look when a person with an M.E. diagnosis does it…?

We aren’t in a place where we can afford to be vague. We’re still, sadly and frustratingly, at the spell it out stage. We can’t assume that the public will grasp the varying levels of severity and function.

The mixed messaging, when we know how terrible the stigma and misunderstanding of M.E. already is so far from helpful; it’s actively derailing our cause.

And if the charities who are meant to be safe guardians of our cause could stop accepting these candidates for athletic fundraising events that too would be swell. To allow people to push their unwell body to the very limit, whilst also claiming to care about the well-being of people with M.E. is, at best, confusing.

Evert year it muddies the waters, that are already murky with misconceptions.