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Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating con

RogerBlack

Senior Member
Messages
902
http://www.dailymail.co.uk/news/article-4790904/Why-doctors-patients-war-M-E.html


Myalgic encephalomyelitis (ME) is a debilitating condition that can leave those affected bedridden for years. It's linked with as many as 60 symptoms, the most common being a feeling of constant exhaustion — 'like a dead battery'.

The condition first reached mainstream consciousness in the Eighties following outbreaks in New York and Nevada. By then it was officially known as chronic fatigue syndrome (CFS).

For a time, it seemed everyone knew someone who was affected by it, and it was derisively dubbed 'yuppie flu' because it seemed typically to affect young professionals.

For years there's been a long-running and bitter debate between doctors and patients about its cause and how to treat it.

And it continues.
One of the most favourable mass-media UK publications I've seen.
Goes into PACE data release, overclaiming for PACE, tribunal, and rituximab.

Thanks to all involved!

There is at this time one comment by someone touting the party line of PACE et al.
I have responded to it noting that the tribunal found no threats, (which was in the article), as well as that simon W has authored >25 papers since claiming to have 'retired'. (this seems to have been approved)
 
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Skippa

Anti-BS
Messages
841
Zippeeee!

Eta: I would have thought the DM was the hardest nut to crack, so this is more than it seems.

I always thought the SMC and crew went around beligerently(sp?) telling journos what to write, perhaps even hinting at threats, and journos don't really like that if they are the conscientious type... one day one is gonna snap and say F you... like here?
 
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Molly98

Senior Member
Messages
576
Delighted to wake up to this this morning, such a refreshing change from usual narrative. Definitely move in right direction, in fact as uk media goes it is a leap in the right direction.

Is this the first time a major UK paper has dared not to tow the science media center and BPS brigades line? I imagine Sir Simon and his merry band of faithful followers will be in an absolute rage this morning, insensed that they are loosing control and people in the media are daring to speak out.
First the JHP now the Daily Mail, they are not used to this, not having 100% control of the narrative, I bet they are furious.
Thank you to anyone involved.
Journalist can be found on twitter it is worth thanking him I think.
 

Cheshire

Senior Member
Messages
1,129
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Jonathan Edwards

"Gibberish"
Messages
5,256
As a reminder, Jerome Burne also wrote these articles :
ME: The truth about exercise and CBT
https://www.hippocraticpost.com/heart-lung/statins-critics-shouldnt-silenced/

The serious trust deficiency afflicting medical advice and what to do about it
http://healthinsightuk.org/2016/10/...cting-medical-advice-and-what-to-do-about-it/

(The DM article really makes Simon Wessely look like a morron with his "nothing to see here, move along".)

Jerome Burne seems to be one of a small number of traditional investigative journalists not hidebound by a predefined agenda. He got the nuances of the story. He gets one fact wrong about my involvement but it doesn't matter. I am hopeful that a large number of my medical colleagues will find themselves reading this at the request of patients. (I doubt many take the Mail but they probably have a sister in law who does, and the President of the Royal College of Physicians is the Mail Editor's sister in law. I have known her since she was seven years old.)

Will we be getting Wessely tweets today along the lines of 'In my personal opinion there was no interference from Russia in the PACE trial.'
 
Don't forget folks that you can up- and down-vote comments without signing in, so once you are done reading the comments vote accordingly on those comments that are accumulating at the bottom of the article. But what would be best would be to sign up and leave a comment as well, even just a quick one of thanks, as readers engagement in this way is what the paper is looking for - the more we engage with the article, the more likely they will publish more on the same subject. :)
 
It's still Daily Mail and it still has rubbish in it like "yuppie flu".

I'm certainly not going to like or RT this one.
Sorry but in my opinion you are being too principled for our collective good. Sure, that's a personal decision that everybody needs to take, do my principles allow me to share or retweet something, but this is a big thing to happen here in the UK.

You don't like that it's from the Daily Mail. I don't like that it's in the Daily Mail, in fact I hate the way that they demonise large portions of society for "entertainment" purposes, but the article itself is a big step forward for the UK mainstream media, and the fact that it is in the Daily Mail, whose typical readership are probably exactly the people that we need to educate, is actually a big plus point. And you don't like the fact that it mentions yuppie flu - personally I think that there is far more good in the article than there is bad. So, on balance, I have liked and shared this article, because I believe it does far more good than harm.
 

Stewart

Senior Member
Messages
291
It's still Daily Mail and it still has rubbish in it like "yuppie flu".

I'm certainly not going to like or RT this one.

It's obviously completely up to you what you choose to like, retweet or promote in any way. But the more attention that articles like this get - highlighting the issues with PACE, GET and CBT and emphasising the biological evidence - the more awkward it will be for NICE to ignore the calls for a full guideline review.

The thought that there are journalists out there who are prepared to scrutinise their decision-making process - and possibly a large degree of public interest in the story - will definitely give them pause for thought.
 

lilpink

Senior Member
Messages
988
Location
UK
As a reminder, Jerome Burne also wrote these articles :
ME: The truth about exercise and CBT
https://www.hippocraticpost.com/heart-lung/statins-critics-shouldnt-silenced/

The serious trust deficiency afflicting medical advice and what to do about it
http://healthinsightuk.org/2016/10/...cting-medical-advice-and-what-to-do-about-it/

(The DM article really makes Simon Wessely look like a morron with his "nothing to see here, move along".)

And this: http://www.independent.co.uk/life-s...news/why-wont-they-believe-hes-ill-59669.html
 

Londinium

Senior Member
Messages
178
Excellent, excellent, excellent.

And whilst my political leanings might not be in line with the Mail's, it's worth noting that:
  • The Mail has covered the JHP issue twice, with a broadly even-handed approach, whereas the Guardian has written diddly-squat; and
  • The Mail has one of the highest circulations of any UK newspaper / website.
So very pleased it's appeared here.
 

lilpink

Senior Member
Messages
988
Location
UK
Jerome Burne has a record of writing properly researched pieces and has always been even handed with the information he has uncovered apropos this disease. In other words he's a 'good egg'.

Although not the main 'take home' message from this paper, I do think we need to squirrel this observation away on the basis that if the DM in future (perhaps at the mercy of the pen of another less educated journalist) attempts to use the 'abuse' and 'threat' nonsense against us we can point to this moment where the DM itself has reported that under oath a member of the Wessely School had to admit that these threats simply didn't exist.

"
Indeed, one expert witness for the researchers drew parallels between these ME/CFS 'activists' and animal rights groups, suggesting there was a serious risk of violence to researchers if the data was released. But then the Information Commissioner's Office became involved and the university was ordered to cough up the data. It refused and then spent more than £200,000 to have the order dismissed.

This was rejected by a tribunal (as for the claim of threats being made, under cross-questioning the expert witness admitted there hadn't been any)."



Read more: http://www.dailymail.co.uk/news/article-4790904/Why-doctors-patients-war-M-E.html#ixzz4poZz8DCX
Follow us: @MailOnline on Twitter | DailyMail on Facebook
 

Stewart

Senior Member
Messages
291
Although not the main 'take home' message from this paper, I do think we need to squirrel this observation away on the basis that if the DM in future (perhaps at the mercy of the pen of another less educated journalist) attempts to use the 'abuse' and 'threat' nonsense against us we can point to this moment where the DM itself has reported that under oath a member of the Wessely School had to admit that these threats simply didn't exist.

"Indeed, one expert witness for the researchers drew parallels between these ME/CFS 'activists' and animal rights groups, suggesting there was a serious risk of violence to researchers if the data was released. But then the Information Commissioner's Office became involved and the university was ordered to cough up the data. It refused and then spent more than £200,000 to have the order dismissed.

This was rejected by a tribunal (as for the claim of threats being made, under cross-questioning the expert witness admitted there hadn't been any)."

And now that the Daily Mail has printed this (is this the first time a major UK media organisation has highlighted the fact that the Tribunal judgement disproved the death threats narrative? I think it might be...) other journalists might also pick up on this point in their future coverage of ME/CFS issues.