on the Daily Mail's website might seem surprising when you consider that ME is a recognised illness worldwide - indeed, as the Mail reported way back in 2002:
So what on earth are they thinking? Well, the Mail carried a story last week, headlined
which reported on a disagreement over whether ME is caused by a virus or not - not whether it exists at all. Having reported the research which claimed to prove ME was caused by a virus last year, the Mail says:
Symptoms of ME, which affects 250,000 Britons, include extreme fatigue and painful limbs. Some sufferers are so weak that they become bed or wheelchair bound.
But lack of a clear cause has led to scepticism that it is a genuine illness.
It's hard in the black-and-white world of newspaper journalism to try to understand a difficult concept like an illness which doesn't have a specific bloodtest or symptom to identify it; or one with such a tricky diagnosis. But that's what ME is. Newspapers can either try to explain that difficult concept to readers, or they can bring up unsourced 'scepticism' and then ask its readers to decide whether an illness is real or not.
This has, understandably, sparked quite a response from people who have ME - not just in the comments under the article itself, but on a Facebook group which has been set up to challenge the Mail about the existence of the poll and how it harms the public perception of people with ME.
I asked Rachel, someone who has ME and who is one of the organisers of the Facebook group, to explain more. She writes:
I've been an ME sufferer for over 5 years now, I was 17 when I was diagnosed. When everyone else my age were getting degrees, socialising, and exploring the world, I was bedbound. The exhaustion, nausea, dizziness, light-headedness and headaches were so severe that I could barely sit up or eat.
ME sufferers across the UK (and the world) have enough trouble when it comes to being understood. Even when the illness is believed to be real, having understanding of its symptoms and variations are hard to come by. Some people have trouble with the medical profession, getting benefits they desperately need can be a nightmare and they can even have lack of understanding from friends and family.
So when a poll appears asking “Do you think ME is a genuine illness?” it’s a wonderful slap in the face.
Some people say it provokes debate - yes, perhaps. But debate on what? Whether the current treatment for ME is working? The new research findings? Local support for sufferers? No, I’m afraid not. This is an outdated and hurtful debate on whether we’re lying or not.
ME is classified as a neurological illness by the World Health Organisation so ANY question about it being genuine is no longer valid.
As co-admin of this group I am gathering sufferers' experiences to send to the Daily Mail. Perhaps the Daily Mail didn't intend the hurt they’ve caused. But I want to show them the stories of the people whose lives have changed dramatically because of this apparently still questionable illness.
I am hoping to make the point: Would these people make this up? Would we force this upon ourselves? Some people are housebound, bed bound. If we can’t be free, at least let us be believed.
Thanks to her for writing that. I wanted to have the perspective of someone with ME to explain how upsetting and disappointing the Mail poll was. Now it may just be the case that someone at the Mail website has looked at the headline on the most recent story and thought that new developments had cast doubt on whether ME was a genuine illness - but that's not the case at all. Asking the question is, therefore, as pointless as asking "Is AIDS a genuine illness?" next to a story about that.
As ever, I like to think the Mail doesn't cause hurt or upset deliberately - sometimes it just does it accidentally, and steamrollers over people's feelings for the sake of a few clicks on the website. But having made that mistake, surely they could do the sensible thing and listen to readers who have ME and who were upset by what they read? Well, we'll see.
And there is some good news. The vast majority of people voting on the Mail's poll believe it is a genuine illness
- though clearly there is still some work to be done to change people's perceptions; and surely polls like that don't help in the first place.
Further information on ME can be found at Action for ME and Invest in ME, among other places - my links don't indicate support for any charity, it's just a suggestion. Please contribute your experiences of ME to the Facebook group, if you want the Mail to know the illness is real, and how it has affected you.