"Time for Unrest": ME article by Nathalie Wright

[MsUnderstood]

Here's an excellent article published at independent.co.uk, plus on a number of other news sites:

"Time for Unrest: Why patients with ME are demanding justice
A new film sheds light on a condition that is largely ignored. Nathalie Wright reports on the struggles patients face to be taken seriously by doctors"

http://www.independent.co.uk/news/l...chronic-fatigue-illness-disease-a8133616.html

It's a long read, but well worthwhile. It contains information about Jen Brea and Jessica Taylor from "Unrest", and goes on to say:

"Such stories of extreme physical debility are not, however, the most shocking part of the documentary. What has prompted a global justice movement is the fact that many doctors still refuse to accept that ME exists at all."

The article describes the history of the illness and covers the scandals associated with the biopsychosocial model, the PACE trial, the reanalysis, conflicts of interest with the disability insurance industry, plus a summary of research developments, and activism activities.

 

[Esther12]

That looks really good. I'm not going to be able to read it all now, but I'm really looking forward to doing so tomorrow. Thanks for posting.

 

[Trish]

Best article I've seen pulling together the history of where it all went wrong thanks to British psychiatrists and egged on by vested interests in health insurance and government. Ranges across Unrest, PACE, forced exercise treatment etc. Let's hope it gets widely read.

Anyone know what other news sites are running it, and whether it's in the paper version of the Independent?

 

[Sbag]

It made me cry, it was so good at summarising the situation to date and reporting it in an easy to read article that those without ME will be able to get the picture in an informed way.

 

[Alis]

it will probably take me a few days to read it all .but from what ive read great article.Thank you @Nathalie Wright

 

[Kalliope]

Wow. The tide IS turning.

 

[Daisymay]

To explain so much of the ME saga so well, so clearly and succinctly ( ok I know it's long but it's still succinct!), it's brilliant. Thank you very much indeed Nathalie Wright and the Independent.

 

[EzzieD]

I just read the whole thing and wow, it is very good. An excellent informative and detailed article that says it like it is about both the disease itself and the political machinations involved in the years of denying/trivialising it, with plenty of links to references. My one concern though, is whether the article will be allowed to stand or if a 'quiet phone call' might result in its sudden disappearance, because it really exposes a lot of BS for all to see. HUGE thanks and kudos to the author and the Independent for such a brave piece. An absolute must-read.

 

[Alvin]

@Nathalie Wright Very well written, one of the best articles on ME/CFS i can remember reading

My one concern though, is whether the article will be allowed to stand or if a 'quiet phone call' might result in its sudden disappearance

I don't think the internet archive is under the jurisdiction of the NHS

 

[guest001]

I agree. Excellent article. I think destined to become one of the 'go to' articles when required to present a precised but accurate account of the politics of this disease and how it impacts people with the disease.

 

[EzzieD]

the internet archive

Good idea! (But I would like to see it stand online in its current position in a mainstream paper.)

 

[Alvin]

Good idea! (But I would like to see it stand online in its current position in a mainstream paper.)

Yup, its already immortalized, though the video is not, hopefully someone has a backup copy

 

[EzzieD]

Yup, its already immortalized, though the video is not, hopefully someone has a backup copy

Do you mean the trailer video that plays at the top of the page? It's also found on YouTube:

 

[Andy]

ETA: Whoa, I didn't expect the video to auto-embed itself when I posted and I don't know how to change it back! It's on YouTube at youtube.com/watch?v=JvK5s9BNLzA if anyone wants the actual URL.

It's the forum software trying to be super useful, which it normally is. To show the actual URL for media like YouTube, Twitter etc that will normally auto-embed, one work-around is to use the "Code" option from the "Insert..." drop-down menu

to give you this

https://youtu.be/JvK5s9BNLzA

 

[EzzieD]

It's the forum software trying to be super useful

Thanks for the advice! I've now edited the post to make it look more sensible.

 

[Andy]

Back on topic, I agree that it's a fantastic article. It could well be worth starting to think that things are changing in the mainstream media, possibly, maybe.

For any Facebook-ers who are thinking of sharing it, sharing from the S4ME post would be useful to us.


ETA: Thanks to @MsUnderstood for some of the text for the post, the creative part of my brain is running slow this morning.

 

[Liv aka Mrs Sowester]

https://jcoynester.wordpress.com/20...une-for-the-biopsychosocial-model-of-illness/
James Coyne's blog is featuring the article.

 

[Alvin]

Do you mean the trailer video that plays at the top of the page? It's also found on YouTube:

How didn't i realize its the trailer, can i blame cognitive dysfunction

 

[Sasha]

From the end of James Coyne's article:

Two sobbing, ashamed physicians
I spoke at a showing of Unrest at Amsterdam Medical Centre in October. You can find a copy of a video here.

After the showing, I was leaving to meet friends for dinner. I stopped when I encountered two stylish women still sitting in their seats in the emptying auditorium, sobbing as if one of them had just received a diagnosis of cancer. I said “Excuse me, can I help?” One woman started to talk, but the other had to finish for her.

“My sister and I are both physicians. We just learned tonight how much harm we had been doing to our patients. We were only trying to do what was best for them, but we refused to listen to them. We feel very badly.”

I said:

“I believe that you thought you would doing what was best. Now you feel differently. I’ll bet a lot of your colleagues aren’t there yet. Maybe you and your sister can feel a bit better about yourselves if you help your colleagues get there.”

I turned and walked anyway without seeing their responses.

Please read the whole thing and give him the traffic at:

https://jcoynester.wordpress.com/20...une-for-the-biopsychosocial-model-of-illness/

 

[Sasha]

Do we know if the Independent story is in the paper version?