Saturday, 29 September 2012

Give us a break!

I let out a slow tired sigh as I sat down to type this blog piece. There's another one! I ask myself why it is that there are journalists so ready to spread hate about M.E.. I don't understand it. One of the comments made me sit back and wonder though; M.E. is today's AIDS. Can that be true? I remember the hide-under-the-table attitude that went with AIDS. Is that how people feel about M.E.? I haven't noticed it being that bad.

This article is written by another delightful journalist, by the name of Damian Idiot Thompson. In it he makes a few claims, namely that the militant wing of people with M.E. are attacking Max Pemberton, that M.E. and eating disorders are related, and that a colleague of his diagnosed with M.E. obviously doesn't have M.E. because he is actually ill ... nice! Rather oddly though, most of the article just seems to be telling the world that social media enables like minded people to work together. I thought we knew that. Maybe he's a bit behind everyone else.

So, my take on his article, apart from thinking he's a first class moron who just wrote it to make a quick buck without actually doing any research, is that he hasn't even bothered to read Max Pemberton's article, which supposedly inspired his. He seems to be saying that he's defending Max because of this huge number of people who are attacking him, mentioning how Max's home security has been threatened. In fact, Max's article itself mentions his home security in reference to his previous article. Max also tells us that it was only about 200 people worldwide that were attacking him.

Personally, I've never ever read of any overlap between eating disorders and people who suffer from M.E.. BUT, everything overlaps everything doesn't it. There's a huge overlap in the number of people who keep pet rats, and also have M.E., but I'm not going to suggest that rats cause M.E.. There's an overlap in people who drive cars and people who wear bobbly hats, but that doesn't mean the two are related either.

He starts off by saying:
"The article you’re about to read will almost certainly be referred to the Press Complaints Commission. I’ll explain why later."

I'll be surprised if it does to be honest, as it's such a naff article. It kind of sounds like he wants it to be though. Just to show how badly the article is written, he doesn't actually go on to "explain why later" in the article either.

So why am I writing about it? Because I am overwhelmed by the response it has received. For once I have actually been able to log in to the site and post comments. My first comment was in reply to his claiming that journalists won't approach the subject anymore; I pointed out that Sonia Poulton does, and linked to her fantastic article. My comment was removed. Presumably linking to other journalists is a no no.

There are a few ignorant trolls who are deliberately stirring up trouble, but I'd like to share some of the comments with you, with permission of course (I am still awaiting permission for some of them).



Carly Maryhew said:

I'd like to clarify a couple things.  There's a common question regarding ME patients commenting on articles like this one: "If you're so fatigued, why are you posting so much?" Most of us are not particularly fatigued, though we have ME, of which fatigue might be a symptom.

There are two debilitating symptoms which might be interpreted as fatigue.  The first is Post-Exertional Malaise, which basically means getting very sick for days or weeks after a normal or even very minor amount of exertion.  Typing takes very little muscular effort, and any but the most severe cases can handle some of this.

The other symptom is Orthostatic Intolerance.  This means we can't handle being upright very well, as our blood pressure will eventually do very funny things that can cause fainting or general inability to think and function.  This is easy to diagnose and usually treatable, but that doesn't happen in the UK (or most other places) due to general ignorance.  Orthostatic Intolerance  can keep people with only mild or moderate PEM from working at jobs where little exertion is required, such as doing data entry in an office.

Orthostatic Intolerance keeps me housebound, and on two horrible occasions, bedbound.  It does not prevent me from typing, and in fact I'm more clear headed when bedbound because I can't even try to sit up for hours at a time.  Lying down does make typing uncomfortable, however, so I don't do much of it when bedbound.  And as long as I don't go crazy and try to play computer games or write a novel, and take breaks, I can type a decent amount before my muscles have had enough.

My hope is to get my Orthostatic Intolerance treated so I can be somewhat functional again.  Then maybe I can think clearly most of the day, not need to lay down every couple hours, and even slowly shuffle around the grocery store again.

Another point: this disease ceases to be invisible if we push ourselves hard enough.  But we work VERY hard to avoid getting to that point, because it invariably results in Post-Exertional Malaise or even long-term worsening of our ME symptoms.  When I've been upright and/or walking too much, some of my leg muscles cease to function - I can still walk, but it becomes extremely jerky and awkward.  If I keep pushing, more muscles wear out temporarily, and my leg or legs cease to function as needed.  It's an extremely disturbing sensation to be trying to lift your leg and for it not respond at all.





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