The Hard Reality of Living with M.E. aka Chronic Fatigue Syndrome

[Kyla]

http://www.vice.com/en_uk/read/this-is-the-reality-of-living-with-me-162

Wow. This is surprisingly great. It's interesting to see which news outlets are printing this sort of article.

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I can't remember how old I was when I realised my mum had ME, aka myalgic encephalomyelitis, aka chronic fatigue syndrome. She was diagnosed when I was two, so I can't compare the before and after. As a child, I didn't really think about the fact that my brother and I were often looked after by child minders. Or the fact that she didn't go out to work and spent a lot of time in bed. She managed, somehow, to make everything seem normal. When I was a teenager she would take me shopping like the other mums did, but an afternoon spent in a brightly lit shopping centre might then mean days spent lying in a darkened room.

When I tell people that my mum has ME I'm usually met with a blank look or the question: "Does that mean she's tired all the time?" There's often an uncomfortable silence, like I'm making it up, or, for the best part of 30 years, my mum has been imagining an illness which doesn't exist. I suppose I can't blame people for their scepticism when the tiny amount of media attention ME receives is clouded with "yuppie flu" headlines and stock photos of people looking a bit jet-lagged...

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Remainder of the article here:
http://www.vice.com/en_uk/read/this-is-the-reality-of-living-with-me-162

 

[Sasha]

Very well written indeed. Very moving.

 

[Antares in NYC]

Great testimonial. Painfully real, but great for Vice to publish this.

 

[worldbackwards]

The odd scientific leap aside, I thought it was great. Really interesting that someone should publish such a real article, rather than the usual equivocations or "hearts and flowers" stuff.

Noticed one charmer in the comments. Does anyone get their hair cut in North London? You know where not to go.

 

[L'engle]

Very good article. I have to say though as a Canadian, the Canadian consensus criteria is not widely used here by day to day GPs and disbelief of patients is still the default. The political situation isn't as bad as in the UK but it is still very much an under treated illness in Canada.

 

[Kyla]

Very good article. I have to say though as a Canadian, the Canadian consensus criteria is not widely used here by day to day GPs and disbelief of patients is still the default. The political situation isn't as bad as in the UK but it is still very much an under treated illness in Canada.

I agree with you completely, but It seems to be a common misconception based on the fact that the CCC was commissioned here and the title includes the word "Canadian"

Still, as far as this sort of article goes it avoided most if not all of the usual cringe-inducing misconceptions.

 

[angee111]

Extremely heart wrenching how accurately it portrays the ignorance and neglect ME/CFS patients experience from the medical profession and family/friends alike. At our most vulnerable, we are essentially left out in the cold left to fend for ourselves /:

 

[Valentijn]

I agree with you completely, but It seems to be a common misconception based on the fact that the CCC was commissioned here and the title includes the word "Canadian"

It can be a useful misconception for the general public, if it suggests that other governments are rejecting the BPS model so completely.

 

[heapsreal]

Good article and a well placed F word befor CBT.
Helps get the message across about psychobabbler treatment .

Those first 2 paragraphs ring a bell with me both ways. Im sure my mum had ME and always remember her in bed and never new her healthy. She has since passed away but other siblings still mention mum as depressed??

The other was is my relationship with my kids. They saw me lying in bed alot and coming home from work wrecked. As being a parent with ME it feels like a failing that you cant do what you wanted to do with them. I had a very different view of myself as the way i wanted to be of a dad pre cfs .

Cheers

 

[Chris from Tampa]

Great article. Thank you very much for posting it.