‘I’ve got a confession. I have ME’

The Confession

I’ve a confession to make. Which I’ll come to in a minute.

But first, I don’t know if you’ve seen the current Mcdonalds advert. It features several different customer types, all enjoying themselves in a ‘hey, isn’t this is a great place to be, regardless of age, and social standing, etc?’ kind of way.

At one point, we see a young, seated couple. The wide-eyed lad says to the girl, I think it’s time we took our relationship to the next stage. Aw nice. In real life, of course, the girl would have leapt up and shouted –

What do you take me for fam? A bare sket? You think I is gonna give up the vajayjay for a happy meal? You need to take a girl to Nando’s for that shit, innit bruv? Shame!

Now, here’s the confession. I’m sitting in Mcdonalds.

I’m not even going to pretend I was pressured into going by my teenage son. (though I do now owe him the grimburger of his choice for helping me out with that last bit of dialogue). No, I came in of my own free will. But I can explain. I’m only having a coffee. I usually go into Costa but this place is much nearer. And what with being ill and having mobility issues these days, I like much nearer. Much nearer is good.

But the last time I was here, a couple of weeks back, I saw something that upset me. I should have spoken up about it, but I didn’t. I will share with you what happened, but first I’d like to talk about something else. Something that I most certainly did speak up about, very loudly in fact, just a few days ago..

The Illness

I have had ME for several years. I don’t talk about it online much these days unless anyone asks. I wrote a few blogs on the subject two or three years ago, but nowadays I tend to use Twitter and FB to take my mind off it. I was never one for scouring the press for the latest opinion pieces, and though I’m happy to retweet links and relevant info, you’re more likely to find me posting photos of weird skies and taking the piss out of X Factor, than chairing an ME debate.

Until a few days ago that is, when I became very vocal on the subject. All because of a couple of people I’d never heard of up until then. They are two men, both authors, one of whom is also a doctor. Let’s call them, Dr X and Mr Y. No, scratch that, let’s call them Dr Max Pemberton and Mr Damian Thompson. Alright, the hell with it, let’s call them Asshats.

I know, it sounds a bit insulting but I do find politeness and good manners to be vastly overrated in some situations. This is one of them. So allow me to introduce the Telegraph Blogging, dynamic duo who I like to call:

The Asshats

First up, Max Pemberton. A doctor and author with several appearances on The Jeremy Kyle Show under his belt. A quick visit to his website highlights Dr Pemberton’s great admiration for the Kylemeister where he implores:

Don’t scoff at Jeremy Kyle – to many, he’s a saviour – If you’re middle class and ill, you can see your doctor. For the less fortunate, there’s reality TV .

Jesus, I know the NHS is being slowly dismantled, but I didn’t realise they’d stopped giving appointments to the working classes, now. If they have, you’d think that that televised tripemonger would be the last person they’d want to see instead. Saviour my arse.

But wait, maybe I’m being a bit rash. After all, I’m a working class man, and the NHS hasn’t been able to cure my ME yet, so, why not? It’s worth a punt, I suppose. What exactly does Jeremy suggest, I wonder?, A new form of Cognitive Behaviour Therapy, perhaps? CST- Cognitive Saviour Therapy..

Next up, Damian Thompson. An author and journalist who, appears, by the number of outraged replies that appear in his Twitter timeline, to belong to the button pushing, feather-ruffling ‘career controversialist’ school of journalism. He has a book out which he himself describes as ‘controversial’. He is also the editor of @TelegraphBloggers. Oh, and did I mention, he’s very controversial?

Now, these two gentlemen may have done, or go on to do, many great and noble things with their lives. They may have saved children from burning buildings and given millions to charity, They may go on to win prestigious awards and enrich the lives of everyone around them.

But when they write about ME, they sound like asshats..

The Articles

I wish I’d never seen the bloody things to be honest. As I mentioned earlier, I don’t usually read stuff about ME in the popular press. It’s not worth the stress. They’re more often than not, annoying and misleading, going for the insulting, ‘is it a real illness or not?‘ angle, whilst providing about as much realistic insight into the day to day lives of severely affected ME patients as Mystic Meg does into the future –

(I see more pain and frustration for Virgos, continued psychological misdiagnosis for Aries, and an ATOS fabricated clean bill of health for Scorpios.. – Mystic ME)

But on 24th Sept, Max Pemberton posted an article entitled – Why few dare tackle the psychology of ME – It was a follow up piece to one he wrote in the summer, about what he calls ME protesters, whom, he says have targeted him and subjected him to threats and abuse. He reckons there are about 200 of these protesters who ‘possess an astounding degree of paranoia and obsession’

In his latest article, Pemberton once again discusses the so called ‘ME protesters‘, whilst also telling us that there is no viral link to ME but he’s keen to flag up the psychological component he thinks is involved. By talking about the ’fear and prejudice surrounding mental illness’ it’s pretty obvious where he’s going with it.

But, despite his patronising and insincere sounding claim to have ’deep sympathy’ for ME sufferers’ he seems more concerned with having the last word over the people he says threatened him previously. Sadly, it seems that the small matter of addressing not insignificant problems faced by the estimated 250,000 ME patients in the UK, comes off a poor second to his wanting us to know just how beleaguered he feels..Add a dash of vague medical opinion and that’s your lot.

Pemberton comes over as narrow minded and dismissive. And for his readers who know nothing about ME the piece is woefully scant. When he says ME is

‘’characterized by extreme fatigue and muscle pain’’ I and a few thousand others are thinking, yes, and the rest. At the risk of sounding like one of Monty Python’s 4 Yorkshiremen, for many ME sufferers, only having fatigue and muscle pain, bad enough as that is, woul feel like a luxurious day off..

So I was stirred from my usual reluctance to ‘get involved’ when I saw that Pemberton, after posting this rather shabby article on Twitter, had followed it with the, I thought, rather goading tweet *puts head above parapet*

He seemed to be looking for a response, so I took the bait and tweeted that I thought his jibe in the article about these alleged ‘ME protesters’ low energy levels, was hardly likely to provoke reasoned debate. He responded, saying, reasoned debate went out the window when he’d had to call the police to his flat. He made no further comment. Hmm, It was clear that the good doctor was in no mood for criticism of any kind from anyone, no matter how unthreatening.

Like I said earlier, this was the first ME article I’d read for some time. Now I’d asked it’s author one simple question and had immediately had the door shut in my face and my entirely benign question dismissed. Indeed, to quote Pemberton himself, the doctor seemed to ‘possess an astounding degree of paranoia and obsession’.

Unsurprisingly the article got roundly slammed on Twitter as Pemberton knew full well that it would. Many were upset at what they felt was yet another media stitch up, misrepresenting their illness. The criticism mounted. Would he respond?

Cue another article, by @TelegraphBlogs editor, Damian Thompson, in support of his fellow scribe, posted on Sept 28thentitled ‘’It’s safer to contradict the prophet Mohammed than to contradict the armed wing of the ME brigade’’

And if Pemberton’s article was a prickly little sparkler, to be held at arm’s length, then Thompson’s was a mean little fuck-off Catherine-Wheel, pinned to the post and whizzing around like a mad bastard..

Unlike Pemberton, Thompson’s piece dispensed with any pretence of concern for patients’ welfare, instead aspiring to nothing more than sticking it to the chronically sick for daring to challenge his pal. The title alone made clear that intention. Then, with it’s praise for the idea that ME is akin to believing in ‘alien abduction’, and it’s harping on about medical conspiracy theorists, his piece came over as denigrating and cheap, and in my opinion wholly unethical.

It was suggested to me by more than one person, that it wasn’t meant to be taken seriously. So then why not just bat this piece of rabblerousing nonsense away, with a roll of the eyes, you might ask? Well, Thompson is nothing if not good at pushing all the right buttons of the particular audience whose nose he is trying to get up. So as with Pemberton, another outraged tweet storm, rained down upon Thompson from the unarmed, but pissed off ‘ME Brigade’

I myself tweeted Thompson several times, ridiculing his article. I started out sarcastically, asking if the ME brigade was like the Boy’s Brigade, do they wear uniforms, and maybe sew on proficiency badges. Ones for sleeping, resting, scrounging, etc. I asked if he thought there might be a terrorist organization at large, called the TiredRA.

As the discord over his inflammatory bullshit spread across Twitter, I was more than happy to keep joining in. I started a hash tag, #MEAlienAbductionMovies eg: ME.T- The Extra-Tired Terrestrial, Close Encounters of the Tired Kind, etc.. By way of a retort, the humourless Thompson could only muster, You seriously used to make a living as a comedian? I know, not exactly the greatest heckler of all time, our Damian..

I even tried a serious approach, at one point, bringing up the real pain and suffering in all this. He responded with Yawn Yawn and zzzz. Eventually he tweeted ME hardliners bore the pants off their opposition.

Wait, rewind, what was that again? ‘opposition’? Strange word to use in this context don’t you think? Why does anyone decide to go setting their cap against a patient group, a bunch of people in all sorts of pain, often stuck at home in bed? You have to start to wonder what the hell he is about really. It’s all a quite unwieldy and perverse if you ask me.

But my angriest moment came when someone else on Twitter, well meaning but missing the point, commented on one of my tweets to Thompson, which they’d thought to be in bad taste, saying- You aren’t helping your cause.

I bristled, I don’t have a cause, I have an illness; I don’t have an agenda, I have symptoms. Now there’s a catchy banner slogan for the ME brigade I thought, adjusting my Che Guevara style beret, and pulling on my chronic battle fatigues. I’d make a crappy militant, after all, puns don’t kill people, but does ME?

Just to clarify, ME is classified by WHO as a Neurological disease. That’s the World Health Organization, by the way, not the legendary mod band. Though, if Jeremy Kyle is handing out medical advice, then why not put Roger Daltrey and Pete Townsend to work, classifying diseases? Hey, they’re talking bout my degeneration..

But seriously folks, aside from all the Twitter gags and sarcasm, and for a less cavalier, more scientific evisceration of Thompson’s piece of blatant asshattery, please do read this short sharp letter of reply from Margaret Williams, Research Assistant to Malcom Hooper, Emeritus Professor of Medicinal Chemistry at the University of Sunderland. In it she refers to ME as an immune disease, and as a ‘serious life threatening illness”


And for the record, Professor Ian Lipkin. the scientist involved in the latest study from the U.S, that found no link between ME and the XMRV Virus, (which Pemberton refers to in his article) also stated ”ME/CFS is not a psychosomatic disorder”. He forgot to mention that bit. Oops. I can’t help thinking that ifPemberton were to take The Rorschach Tes, he’d see, in every inkblot, an ME Protester and that his test results would show, ‘possess an astounding degree of paranoia and obsession’.

The Game

All this, getting caught up in Max and Damian’s journalistic folie a deux and the subsequent Twitter aftermath, puts me in mind of a scene from one of my favourite films, One Flew Over The Cuckoo’s Nest.

Set in a psychiatric institution, one scene sees the sardonic Nurse Ratched presiding over a patient therapy session. As things descend into chaos and distress all round, inmate McMurphy, played by Jack Nicholson meets the nurse’s emotionless gaze with a look that says, you bitch, you’re loving this aren’t you? Then later, in a review of his treatment, in front a panel of doctors, McMurphy says, I don’t like that nurse, man. She likes a rigged game, you know what I mean..?

I do, indeed. And Messrs Pemberton and Thompson know exactly what kind of game they like, too.

They know that the ill people they have chosen to scorn and mock have no national platform or advocate representing them.

They know how to stonewall patients’ criticisms by dismissing them to anyone within earshot, as troublemakers, conspiracy theorists or hardline militants. They know how to belittle protesting patients with the cliché, ‘you can’t be that ill if you have the energy to complain’.

They know that the lack of understanding amonst the general public, regarding the condition, allows them keep throwing curve balls that detract from the real health issues these people face.

They know that when their half-cocked articles are put out there, they then encourage and enable others to use their words as ammunition against the sick, or as Thompson calls them, the opposition. They know that these articles are likely to cause hurt a lot of people great distress. They don’t care. Rather like the emotionless Ratched, they light the fuse then sit back..

They like a rigged game, you know what I mean..?

The Disabled

Remember at the beginning of all this I’d said I’d seen something here in Mcdonalds on a previous visit that had upset me but which I’d done nothing about? Well it was this:

A group of mentally and physically disabled kids, with their carers, sit a few tables away from me.The kids are being a little loud and messy and I notice two boys, aged about 11 or 12, some feet away, gawping at them and smirking to each other. Then, when the carers aren’t looking, one of the boys throws a couple of fries at the kids and they both laugh. The fries dont hit anyone, just land on the floor. The kids they’d thrown the fries at aren’t aware of this nasty prank and soon after, the two lads leave, still smirking and staring at the kids..

Those boys obviously saw the disabled children as weak, easy prey and unable to fight back.They behaved like asshats…

they liked a rigged game, you know what I mean..?

And now it occurs to me.That’s who Max and Damian remind me of. Those two boys. But this time, i’m speaking up.

You see, ME, can be really really nasty. It can leave people housebound and bedridden, with many horrendous physical symptoms. It can leave them desperate for help and understanding, feeling dismissed, scared, even suicidal, often with no social support systems in place and no financial safety nets as their benefits are taken away.

If they don’t improve with talking therapy and exercise, then eventually the medical profession will most likely to leave them to their own fate. Then they slip off the NHS radar altogether because they can’t get to hospital for the psychological treatments that don’t work for them anyway. Like I say, it can be really nasty.

And then there are the Telegraph Bloggers, Pemberton and Thompson who know all this. Yet they look on, like two young boys who should know better, smirking, egging each other on as they hurl a volley of hurtful, spiteful words at the…opposition. Two chronic fat egos, tapping at their keyboards deliberately, pathetically

throwing chips at the disabled.

Mark Hurst