The Guardian's Science Weekly podcast - 2 November 2018 - What role should the public play in science?

https://twitter.com/user/status/1058485876169281537

https://twitter.com/user/status/1058485876169281537

 

https://twitter.com/user/status/1058502585588609030

 

Thanks so much for the transcript, @Sly Saint! So helpful.

 

From his opening sentence you could tell that Ian Sample was going to present a selective view.

"In May activists rallied in New York"

So no mention that this was ME awareness day, that similar protests were taking place in 100 cities across the world, that thousands of pairs of shoes were lined up, representing all the other 'activists' who were too ill to attend.

"MS: the term ME stands for myalgic encephalomyelitis. This term was coined in the 1950’s to describe an epidemic of symptoms in the staff of the Royal Free Hospital which occurred during a polio epidemic"

So no mention of "The name chronic fatigue syndrome (CFS) was coined by the Centers for Disease Control and Prevention (CDC) following an outbreak of a flu-like illness at Incline Village, at Lake Tahoe, in the 1980s."

Michael Sharpe has almost word for word used the line about 'the term ME' from the journalists primer on ME-pedia:
https://me-pedia.org/wiki/Primer_for_journalists

I suggest people tweet/send this link to Ian Sample and any other journalists who might be considering doing a 'piece' on ME/CFS.......they might learn something.

 

I see that Ian Sample has a PhD in biomedical materials from Queen Mary's London. I'm trying to remember why the name of that institution rings a bell.

 

https://twitter.com/user/status/1058442266333904898

https://twitter.com/user/status/1058443247423578112

 

Barbieloo‏ @BarbR666 3m3 minutes ago

Replying to @b_m_hughes
International Practitioner Health Summit 2018 The Wounded Healer - S Stevens, Chief Exec NHS England http://php.nhs.uk/ S Wessely President RCM C Gerada Medical Director at NHS PHP Wonder if missive (Grunidian) is part of an orchestrated campaign agin pesky patients/ campaigners? DWP?

 

Sharpe just says stuff he thinks suits the message he wants to provide, regardless of the facts. He's been caught out making misleading/wrong statements to the media before too.

Both the depression and genetics stuff are equivocal, there is some familial association but that could be due to environmental exposures as much as any other factor (infections perhaps?).

Hmm... I got it, no wait, hmm, it's a headscratcher alright!

 

omg! It's a conspiracy! Seriously though - please don't do this. Just because QMUL hold the data and employed one of the researchers, doesn't mean that everyone who ever worked or studied there is somehow culpable in this. (I know it was probably said in jest - but just saying)

 

I can’t listen t this being presented as fact. If the BPS lot would engage in debate rather than manipulate chances to present their story unchallenged I would have some more respect. Simple test really - will you debate your side with the other or with scientists who disageee with you, no , why.

 

Having just listened after all to this gross distortion, two things I noted. Didn’t sharpe claim the royal free outbreak was polio ? And I note he was quoting researchers in Denmark getting harassed, people like per fink no doubt I wonder why, for lucking up young women , but said to a lesser extent USA. Isn’t it obvious it is to a lesser extent USA because there are less powerful BPS people dominating the field there and the USA aren’t endorsing the Michael sharpe approach. He also seemed very keen to keep ME and CFS as possibly distinct. I’d like to ask if it turns out they are, certainly ME complex severe distinct from Oxford fatigue, what has the UK done for ME patients since his involvement in the 90s. I’d also ask if he’d had a bedridden daughter since the 90s , does he think she has been well served by his BPS CFS narrative and it’s dominance in terms of nhs approach in the uk.
The woman wasn’t knowledgeable enough to understand why CBT get was the only treatment with any evidence.

 

I think he said that it occurred during an outbreak of polio, which is, I think, correct. I don't think he claimed that the Royal Free cases were due to polio, though those unfamiliar with the case might infer that.

 

I might have just written a strongly worded letter to The Guardian...

 

on Sharpes twitter in response to the podcast:
https://twitter.com/user/status/1058440467786936321

https://twitter.com/user/status/1058693900825714688

https://twitter.com/user/status/1058721610935517186

https://twitter.com/user/status/1058354486824054784

https://twitter.com/user/status/1058712718029606918

 

Just remember that MS has blocked anyone who has made reasonable arguments to him. These won't show up to anyone viewing his feed.

Now see this:


I'm sorry, but incandescent does not adequately describe how I feel right now...

 

LOL certainly hope not as I am an alumna of QMUL - wrote and told the principal or vice - forget which - how I was now ashamed to admit it.

 

Does Michael Sharpe really not know that the person whose complaint sparked this episode was so ill that he is no longer with us? Or that the successful FoI request that has shed some light on things came from someone who has since been too ill to communicate with others?

I have made a decision at present not to get involved in this sort of stuff but for a psychiatrist to behave like this is simply pathological. Psychiatrists are supposed to have respect and sympathy for people in distress.

 

I think this should be tweeted to him....anyone able to do this?