Links to media coverage of the Naviaux study (Aug 30, 2016)

[Never Give Up]

Hillary Johnson– ‏@oslersweb

Logical conclusion deriving form Naviaux study is that pushing PWME out of their adaptive hibernation state can kill them. Yes, Sir Wessely?
3:32 PM - 30 Aug 2016

Great tweet!

 

[Sidereal]

Just saw the SMC (UK) statement, somehow I missed it in the midst of all the excitement. There appears to be an organised campaign by the powers that be in the UK anytime a major biological study of ME/CFS comes out. The same happened when the Lipkin/Hornig immunology paper came out. The SMC rounds up a bunch of British psychiatrists who have zero expertise in the area to damn the study with faint praise and conclude with the take-home message along the lines of "nothing to see here folks, move along". The usual waffle about needing replication and essentially advising the patients to expect to die with no medical care and in chronic pain and poverty before the findings influence medical care in the NHS.

 

[Never Give Up]

Just saw the SMC (UK) statement, somehow I missed it in the midst of all the excitement. There appears to be an organised campaign by the powers that be in the UK anytime a major biological study of ME/CFS comes out. The same happened when the Lipkin/Hornig immunology paper came out. The SMC rounds up a bunch of British psychiatrists who have zero expertise in the area to damn the study with faint praise and conclude with the take-home message along the lines of "nothing to see here folks, move along". The usual waffle about needing replication and essentially advising the patients to expect to die with no medical care and in chronic pain and poverty before the findings influence medical care in the NHS.

F**ktards!

 

[worldbackwards]

Yes, Sir Wessely?

It's Sir Simon. Americans never get the protocol right.

There appears to be an organised campaign by the powers that be in the UK anytime a major biological study of ME/CFS comes out. The same happened when the Lipkin/Hornig immunology paper came out. The SMC rounds up a bunch of British psychiatrists who have zero expertise in the area to damn the study with faint praise and conclude with the take-home message along the lines of "nothing to see here folks, move along".

But aside from the equivocal quote from yer Edinburgh psych, no-one's really paying any attention. When their story ceases to be entertaining, the media no longer humours them very much.

 

[Mrs Sowester]

So why is this only making the right-wing press in the UK? Or am I missing something?

 

[Sidereal]

So why is this only making the right-wing press in the UK? Or am I missing something?

It was in the Times also. (Unless you consider that 'right-wing'?)

 

[Mrs Sowester]

It was in the Times also. (Unless you consider that 'right-wing'?)

Yes, that's owned by the Murdock group News UK - definitely right of centre.

 

[alex3619]

It's Sir Simon. Americans never get the protocol right.

I still prefer Ris Simon.

 

[slysaint]

I've got the Daily Mail (UK): http://www.dailymail.co.uk/health/a...ebilitating-illness-telltale-signs-blood.html

@charles shepherd
why is the video in the middle of the article entitled "NHS Choices explain the effects of fatigue on sufferers"?

Also, do articles like these get circulated to all the major TV news (around the world) by anyone?
EDIT: have sent all the links to CH4 news.

 

[Esther12]

It was in 'the i'. The Guardian is probably the worst for CFS - promoting O'Sullivan and Marchant type 'compassion'.

 

[Mrs Sowester]

It was in 'the i'. The Guardian is probably the worst for CFS - promoting O'Sullivan and Marchant type 'compassion'.

The print edition of the i? I haven't found it in the Independent online yet, or the Guardian.

 

[Esther12]

The print edition of the i? I haven't found it in the Independent online yet, or the Guardian.

Sorry... was thinking of their coverage of the PACE trial tribunal ruling. Ignore me.

 

[worldbackwards]

So why is this only making the right-wing press in the UK? Or am I missing something?

I do think this is a bit of a trend. My own interpretation is that the right wing press like to see experts brought down a peg or two, particularly in terms of the received wisdom of the "liberal elites", of which medical science is one. This tends to err more towards stories about doctors and government agencies interfering with "the family" (as typified in The Express) rather than these kind of stories, but the right has, in recent years, been generally happy for science to be wrong about all sorts of things (climate change being the obvious one) and so this slips neatly into the narrative. Add to that the fact that the Mail would whore out their grandmothers for a headline and one of the Barclay Brothers, who own the Telegraph, has ME himself and you generally have a more receptive audience for these stories.

On the other hand, The Graun is very much pro science on climate change, GM crops, etc, which is all very well but ends up meaning that it's always happy to sit behind the scientific establishment, even when it's making a fool of them. And they've always loved a bit of mind/body, "we're all a bit mad really, aren't we, when you think about it, in a very profound sort of way" kind of equivocation (so long as it isn't lapping at their own door and preventing them from getting medical treatment, presumably). The Times, which is more or less quite a centre ground paper, veers more in this direction, though it appears that they might be changing their tune (see other threads) which I suppose could be a bellweather. Or maybe not.

That said, online leftish papers like the Indie and particularly the Huffington Post have been very supportive of patients. And The Mail would turn on us in a flash if someone stripped to their bikini for pics and said that CBT cured their ME and made them go back to their cheating husband. So maybe that's all just a load of old bollocks. But it kept me occupied for about 15 minutes, so that's all right.

 

[Chrisb]

The SMC rounds up a bunch of British psychiatrists who have zero expertise in the area to damn the study with faint praise and conclude with the take-home message along the lines of "nothing to see here folks, move along".

I noticed that the person used for the quotes was said to be an "Honorary Consultant". I wonder what that could possibly mean in terms of face to face experience with patients.

 

[Luther Blissett]

On the other hand, The Graun is very much pro science on climate change, GM crops, etc, which is all very well but ends up meaning that it's always happy to sit behind the scientific establishment, even when it's making a fool of them. And they've always loved a bit of mind/body, "we're all a bit mad really, aren't we, when you think about it, in a very profound sort of way" kind of equivocation (so long as it isn't lapping at their own door and preventing them from getting medical treatment, presumably).

Along with their authoritarian paternalistic leanings. (See the infamous 'In praise of IDS' for full on mind melting stupidity)

 

[JaimeS]

And they've always loved a bit of mind/body, "we're all a bit mad really, aren't we, when you think about it, in a very profound sort of way" kind of equivocation

THIS IS A HIGHLY ACCURATE REPRESENTATION of this point of view.

 

[Mrs Sowester]

Thank you @worldbackwards you've certainly made me chuckle.
Well, the Mail online contradict themselves so much it's an endless source of fun and their cancer scares are brilliant (Spoiler alert! - Look out all you male or female, broccolli eating people with children or no children, especially if you menstruate, or don't).
I've got to admit to being a sandal wearing, kale loving, houmous eating, chicken keeping, Guardian reading liberal leftie. I know they like to believe you can think yourself better by being an all round lovely positive person, eating quinoa and avoiding tinfoil-hats (whilst feeling sorry for the people wearing them) but I am very disappointed they haven't covered this yet.
Please don't anyone tell me Father Christmas doesn't exist either and burst all my bubbles at once...

PS I lied about the sandals

 

[slysaint]

I like the new daily mail 'stock' photo for ME sufferers, we're so cute

 

[JaimeS]

Well, the Mail online contradict themselves so much it's an endless source of fun and their cancer scares are brilliant (Spoiler alert! - Look out all you male or female, broccolli eating people with children or no children, especially if you menstruate, or don't).

 

[JaimeS]

View attachment 17045 I like the new daily mail 'stock' photo for ME sufferers, we're so cute

I think this is one of the most neutral images ever used to depict this illness! I know some will think it marginalizes / doesn't look serious enough, but I think it's good:

• Value-neutral (unless you count 'awwwww' as a value)
• Memorable (hey, remember that hibernating creature and that weird illness?)
• Actually associated with the topic ('hibernating' metabolism) in a meaningful metaphor.

Good choice for image, says I.