Special Report - Online activists are silencing us, scientists say Reuters March 2019

Exactly. He 'worries' about Sharpe's 'harassment' but actually never mentions the treatments Sharpe advocates as recommendations. He confusingly says that there is evidence for pacing which I'm sure Sharpe would dispute! It's a completely on the fence piece which comes across as written by someone who either doesn't know much about the condition (and therefore shouldn't be opining on it) or isn't willing to reveal their own allegiances.

There is no mention of testing for conditions like POTS/OI etc which a GP could actually try to treat and provide some relief for. He ultimately says that a diagnosis of ME (like you quote) is not helpful because no help can be offered which is utter nonsense. In what situation is telling someone what their illness is not helpful? People get given terminal diagnoses and I cannot imagine what that feels like but a doctor wouldn't stray away from it because there is nothing more they can do.

This is rambling and I'm not making my point very well but this is a complete non-article.

 

Sadly not a non article for those with no knowledge of the condition.

 

One wonders where George Monbiot and Frances Ryan are, or why they may decide to steer clear.

 

Frances Ryan is expressing interest on Twitter (perhaps Rod Liddle has done us a favour), we'll have to see what if anything comes of it. I know that she has been aware to some degree about ME for some time.

 

Presumably they are dependent upon their editors.

 

Poor Claire Fox, hoping in vain to be trolled so she can join Michael Sharpe's small gang of victims. I'm trying to imagine a sadder ambition in life, but I can't.

All it should take is one UK mainstream journalist to realise that Michael Sharpe's narrative is completely implausible. People don't leave their jobs because of trolls, they leave twitter. Stephen Fry didn't announce that he was leaving the entertainment business because of twitter, he announced that he was leaving twitter because it was crap and full of trolls. It will just take one journalist to say "MS can I see some evidence from that file on your computer", followed by "You have got to be kidding me - you call that harrassment?" and a long article about devious psychs making up social media trolling stories as a smokescreen when their appalling attempts at science are uncovered.

 

@Jonathan Edwards Should have added that according to Frances Ryan on Twitter the Guardian will be producing a piece soon

 

Yes, I have emailed both of them.
George Monbiot has never seemed dependent on an editor when it comes to exposing bad practice.

I fear that it is all too easy for everyone to think:

They say people with ME are nuts, maybe they are.
It figures that they are angry and abusive because people are saying they are nuts.
So let's leave it.

The longer that the advocacy narrative is that Sharpe is wrong because ME is 'biological rather than mental' the longer this mindset will continue and Sharpe will get away with his only argument.

But it is interesting to look at it the other way around. It seems that tiny David T with a stone and a sling at Virology Blog is now totally outnumbered by all these media Goliaths. Yet this collection of Goliaths is only there to shout down David, and somehow they seem to need to go on and on shouting - because David is still there and shows no signs of being disarmed.

 

I may well be confused, but isn't this the sister that Fiona said had ME?

 

And that is pretty worrying because if anyone at the Guardian is ever going to produce a piece that is any use they need to speak to someone like me. As Vincent Racaniello said to Kelland, she was not going to do an informed piece without contacting me.

 

We debated this before and I think there turned out to be two Claires, but this might still be the 'ME' one.

I cannot see how on earth anyone could call that interview brilliant. My wife pointed out that MK made it very clear that she had no interest and could not be bothered to raise the interview to a reasonable intellectual level - presumably because she was doing it because she had been told to.

The SMC line seems to be just keep shouting how wonderful your friends are and they will do the same.

 

I agree and think a piece produced 'soon' will likely rely heavily on Kelland's reuter's piece.

 

Yet Ryan's tweet sounded sympathetic to PWME.

 

Could some people who are on Twitter point out why it would be pretty ignorant for journalists working on ME to omit Jonathan Edwards' view on ME research? (Edit: And use polite wording if they do?)

https://www.s4me.info/threads/speci...ay-reuters-march-2019.8557/page-7#post-150530

 

He is 'annoyingly persistent' to paraphrase Sharpe and that's why he's one of our heroes.

ETA: added 'one of' because we have many including you Jonathan.

 

I'm assuming that a 'soon' piece may not be one produced by Ryan, but I could very well be wrong. I think anything by Ryan would be sympathetic and hopefully accurate, though she would need to speak to people Kelland avoided, such as yourself, to do the subject justice.

(I'm guessing at this of course, and probably haven't ordered my thoughts well in my comments.)

 

I think that's Gemma, the adopted sister, that has ME.

https://en.wikipedia.org/wiki/Fiona_Fox
https://www.s4me.info/threads/artic...he-revolutionary-communist-party-c-1996.3452/

ETA links

 

A tweet tagging Ryan might be good.