"Is ME real?" asks Mail
This poll
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.
I’m now 22 and am still housebound but that’s an improvement to my previous state. I’m currently involved in a Facebook group - created to show ME sufferers' dislike of this poll.
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.
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January 10th, 2010 - 19:30
WHy do they attack such (not meaning to be patronising) vulnerable targets?
Aren't there more important people t go after?
January 10th, 2010 - 20:03
My Grandmother suffered from very serious ME from when I was about 5 or 6 to my early teens. This meant that she couldn't see either of her grandchildren growing up. She is much better but she is still not working and has to make sure she doesn't suffer from too much stress. Why would she lie about this?
January 10th, 2010 - 20:14
What a genuinely horrible poll. I'm sure their defence will be "we're not SAYING anything, we're just asking a question", but I bet they wouldn't ask the question "Is HIV real?", despite there being as much ill-informed 'debate' about the existence of HIV as there is about ME.
Anyway, I can't see the poll on the DM website now – hopefully some editor with a modicum of sense has pulled it.
January 10th, 2010 - 20:19
Yeah, because nausea, headaches, being bed-bound e.c.t. sounds so enjoyable and fun. Let's all 'pretend' to have it. FFS.
January 10th, 2010 - 20:37
Polls like this are stupid in their very conception. Putting aside the fact that ME is a medical condition recognised by WHO, how is it tenable to decide whether a medical condition is real by voting? Of course, that's not the real purpose of the poll – it's actual aim is to stir up an issue, and thus copy, and thus readership, and as always with the loathsome right wing press, it's all at someone else's expense.
January 10th, 2010 - 23:00
@ Daniel, people with M.E. claim benefits; that's why they are a target.
January 11th, 2010 - 00:06
This is exactly why the Daily Mail should not publish any medical news of any kind.
Sadly this is not the only case I have seen in the Mail, but it is a delightful analysis.
Cheers.
January 11th, 2010 - 00:56
hi. I actually emailed the mail in protest…i'll keep you updated on their response…
January 11th, 2010 - 01:27
If you want to understand exactly why the Mail was wrong to go from the story about the viral research to the poll, read this:
http://www.mindhacks.com/blog/2010/01/fighting_fatigue.html
(CFS is the same as ME)
Good post, and has useful thoughts for thinking on other medical subjects too.
January 11th, 2010 - 05:36
Thanks for doing this post. It is a difficult subject for the media to cover effectively, because there is a lot of history and a lot of muddy waters caused by the involvement of psychiatrists in ME research and policy over the last 20 years. The backstory is too complex, so they aim for lowest common denominator and start using phrases like "real illness" (which means nothing anyway – if by "real" they mean "physical", then surely that's deeply offensive towards people with mental illnesses?)
But none of that excuses this poll – I don't, however, expect any better from the Mail. (For the record, ME was recognised as a neurological condition by the World Health Organisation in 1969 – 20 years before any psychiatrists were involved in researching or treating it. As a sufferer myself, it depresses me no end that 40 years on, this is the stage we're at.)
January 11th, 2010 - 08:29
ello there.
Just thought you might like this…
http://www.dailymail.co.uk/news/article-512815/Briton-jailed-years-Dubai-customs-cannabis-weighing-grain-sugar-shoe.html
Compare the tone of the article with the comments afterwards… Sometimes the Mail is a long way more sensible than it's readership.
January 11th, 2010 - 10:01
Well done for once again exposing the incredulous ignorance & bigotry of this nasty, right-wing rag. ME sufferers being told nothing is wrong with them is like anyone with as serious disease being told they're faking it for attention. My grandfather suffers from Parkinson's and my cousin has Multiple Sclerosis – are the Fail claiming medical expertise when they believe it doesn't exist? It's a pathetic excuse for news.
January 11th, 2010 - 10:09
I know two people who have been diagnosed with ME; one was legitimately very ill and spent her final two years of senior school at home as well as another three years recovering and catching up on her studies part-time, the other gets tired about as often as I do.
I think the problem isn't in whether or not the illness is legitimate, rather, whether or not everyone who has managed to get themselves diagnosed is honestly ill. This, unfortunately, is the motivation behind some people not believing it is a genuine illness.
January 11th, 2010 - 10:27
Actually, I have just noticed the link at the end of your post and thought you might want to know – Action for ME is probably the worst charity you could link to. They are well and truly in the pockets of the psychiatric lobby and were the only ME charity to support the NICE treatment guidelines (which are based around cognitive behavioural therapy and forced "exercise" programs, and actively prevent sufferers from accessing the diagnostic tests that do exist for ME, for fear of "validating" the patient's "illness beliefs").
Invest in ME – http://www.investinme.org – are a much much better charity to promote. They fund and campaign for biomedical research, and biomedical research only – no shrinks allowed.
They have already contacted the Daily Mail about the poll – letter is here: http://www.investinme.org/Media2010%20Daily%20Mail%20Poll%20Jan2009.htm
January 11th, 2010 - 11:36
Something from somebody with "depression", "debilitating fatigue" and other GP diagnoses, who may or may not be on "The Autism Spectrum"* (sic):
Never say you "suffer" from the medical conditions we are discussing (note I say "medical conditions" not "illnesses") – you, me, we "have" them and in the end, you, me, we are the ones who have to help us the most; otherwise we are leaving ourselves open to increasing controlling intervention by others and the risk of developing what I call MIS – My Illness Syndrome.
Unfortunately, experience has taught me (and others I talk with) not to rely on anybody for help, short or long term. I don't see the point of getting too agitated about one or more organisation's policies at any one time – better to look for like-minded "sufferers" (sic) and organise (as far as we can) – could "we" do something together for ourselves, given our conditions affect our own daily lives so much?
As for the Daily Mail – the way British jounalism works these days means that in a few weeks somebody, possibly a celebrity, will get a double page spread to write 1,000 words+ (with accompanying "sad me" photographs) on "My ME Hell"
Just to point out re. the "illnesses" mentioned, I am certainly not a denier but I can see how people with them can be exploited. Also, I have wondered for several years that if the "professional" ME/CFS "suffers" are so "ill", how come they can write books, appear on TV and Radio, speak at conferances etc.? (It's only this year that I've been able to start blog commenting** – I find constructing letters, for example, very difficult).
Sorry to go on, AV; hope it helps.
*I've been wondering, could we call Asperger"s Syndrome "Autism Lite" for the upper-middle classes who claim they have it?
** I've found your (TEOR commenters and AV) blogs and comments very interesting and helpful just to read to start getting involved with "like-minded" people. Thank you.
January 11th, 2010 - 13:00
I suffer from fibromyalgia. We get the same shit from people (AND doctors!) telling us that it´s not a genuine illness. And that is even after sleep studies have confirmed that fibro patients has very very different somatic patterns to healthy people. Well, I guess that´s just not enough proof anyways.
((
F*ck the Mail and people who voted "No" in that poll.
January 11th, 2010 - 22:41
"Also, I have wondered for several years that if the "professional" ME/CFS "suffers" are so "ill", how come they can write books, appear on TV and Radio, speak at conferances etc.?"
Also, I have wondered for several years that if the "professional" cancer "sufferers" are so "ill", how come they can write books, appear on TV and radio, speak at conferences etc?
Now do you see why what you just said is bullshit?
January 14th, 2010 - 14:24
No wonder some ME sufferers get all arsey when it's suggested the syndrome may be to any extent psychological, when there's idiots who think "No physical cause" = "not a real illness".
January 15th, 2010 - 13:45
Daniel Hoffman-Gill, you ask "WHy do they attack such (not meaning to be patronising) vulnerable targets? Aren't there more important people t go after?"
The tabloids would lose gossip-loving readers if they only tackled genuine bad folks, and collapse from compensation payouts if they only went after people who can fight back. They are at their most profitable when being callous playground bullies.
As John Pilger said of another tabloid in another instance:
"The Sun’s treatment of the Hillsborough tragedy was typical not only of its record of distortion, but of its cruelty. The rich and famous have been able to defend themselves with expensive libel actions; the singer Elton John won damages, before appeal, of £1 million following a series of character assassinations. But most of The Sun’s victims are people like the Hillsborough parents, who have had to suffer without recourse."