BBC Stories: "I had it all - now I create a new world in a single room"

[Webdog]

BBC covers the realities of living with ME.

http://www.bbc.com/news/stories-42404500

As Prince's art director, Michael Van Huffel became used to working at all times of day or night. But 10 years ago the debilitating neuroimmune condition ME left him barely able to move - since then he has had to find very different ways of making art, within the boundaries of a one-room apartment.

"I have used up all my savings from the years I worked as a creative director in Hollywood. Having to auction the things Prince gave me broke my heart. I had to sell a one-of-a-kind CD case Prince made for me with his own hands, as well as one of his hats and one-off artwork he'd written guidance notes on. It's stuff that can't be replaced. I sold it because I absolutely had to."

 

[Andy]

A good article I thought. The writer is on Twitter if anybody wants to send any positive messages to them, https://twitter.com/Mobeen_Azhar

 

[TiredSam]

Unbelievably good article for the BBC website, who usually completely ignore M.E. Can't find one thing to grumble about here. Now what am I going to do?

 

[Andy]

Can't find one thing to grumble about here. Now what am I going to do?

You could complain about not having anything to grumble about?

 

[Alvin]

Unbelievably good article for the BBC website, who usually completely ignore M.E. Can't find one thing to grumble about here. Now what am I going to do?

I can grumble "People do get better from this illness"
While technically true the remission rate of people who have had it for 5 years or more i would guess probably something like 5%. Meaning a 95% chance of having this for life. 95% non remission rate would make a lot more impact.

Otherwise the article looks unimpeachable (not that i actually read all of it, i can only skim it currently).

 

[TiredSam]

I can grumble "People do get better from this illness"

Good spot.

Also this:

Like some other ME patients, he discovered that his medical insurance wouldn't cover all the treatment he needed. Unable to work, he was forced to sell his home in Venice Beach, his car and his personal collection of Prince-related memorabilia to pay his medical bills.

The phrase "treatment he needed" implies that an M.E. sufferer can go to a doctor and the doctor will say "It's M.E., you need this treatment" and offer something useful, which is very far from most M.E. sufferers' experience.

I'm happy now. You just have to look hard enough for something to grumble about. I woke up in a good mood this morning for some reason, sorry, normal service will be resumed as soon as possible.

 

[Alvin]

Good spot.

Also this:



The phrase "treatment he needed" implies that an M.E. sufferer can go to a doctor and the doctor will say "It's M.E., you need this treatment" and offer something useful, which is very far from most M.E. sufferers' experience.

I'm happy now. You just have to look hard enough for something to grumble about. I woke up in a good mood this morning for some reason, sorry, normal service will be resumed as soon as possible.

I don't call it grumbling, i call it fact checking

 

[TiredSam]

I don't call it grumbling, i call it fact checking

Oh great, now I've got some nit-picking to grumble about. Today's just getting better and better.

 

[Alvin]

Oh great, now I've got some nit-picking to grumble about. Today's just getting better and better.

I assume you would agree its better then alternative fact checking

 

[TiredSam]

I assume you would agree its better then alternative fact checking

hmph.

 

[Trish]

I think it's an excellent article. Yes, he talks about treatment, but it's clear from his continuing level of disability that the treatment is, sadly, not enabling him to lead anything like a normal life. He may be talking about symptomatic treatment and possibly antivirals etc which seem to help some people.

Well done BBC, for once.

 

[Liv aka Mrs Sowester]

Great article. Healthy people I know are sharing it which is brilliant.

A good article I thought. The writer is on Twitter if anybody wants to send any positive messages to them, https://twitter.com/Mobeen_Azhar

Just to add to Andy's request - please invite him to join us here Twitterers.

 

[Andy]

 

[Alvin]

hmph.

I'll be here all week. And maybe next week too.

 

[guest001]

Just seen it too and thought it was VG. Have messaged the author on FB to thank him.

 

[Barry]

Is the BBC trying to reposition itself toward the good side of ME/CFS journalism at last? Common sense (or maybe just self preservation) finally filtering through? Maybe before so much of its atrocious non-coverage gets exposed for what it has been ... lip-service spoon-fed regurgitation of BPS propaganda. I wonder if Jen Brea's tweet asking what is going on with the UK media might even have helped?

 

[Barry]

But 10 years ago the debilitating neuroimmune condition ME left him barely able to move

Blimey! I doubt that was sourced from the SMC. Has the BBC made a New Year's resolution or something? ... Change to the winning side?

 

[Alvin]

Is the BBC trying to reposition itself toward the good side of ME/CFS journalism at last?

Call me cynical but i doubt it, probably just luck an open minded reporter got this story.

 

[Barry]

Call me cynical but i doubt it, probably just luck an open minded reporter got this story.

I really meant is it forseeing that the truth is in the process of being exposed, and that the BBC will itself be exposed as part of the truth-suppression mechanism that has existed for so long. Maybe they are trying to sidle over to the winning side ... and hope nobody notices. We are fellow cycnics .

 

[Alvin]

I really meant is it forseeing that the truth is in the process of being exposed, and that the BBC will itself be exposed as part of the truth-suppression mechanism that has existed for so long. Maybe they are trying to sidle over to the winning side ... and hope nobody notices .

Too complicated, Occam's razor and all