Rod's back! Coverage in The Spectator, 2nd November

[Jonathan Edwards]

And don't forget, Jonathan, that not only is the methodology bad, but the results for all the outcomes (objective and subjective) are now null! (Or not clinically useful for the walk test after GET.)

Agreed; I hope I get that across in my other quote - now on MEAction.

I guess I will never know why the message to Hardman via Dolphin was deleted as SPAM. I thought it might be considered abusive, but it is fairly civil on reflection. I wonder if there is conflict here - and I mean that with no irony. People close to PWME often feel guilty about not knowing what is for the best. Doubting that psychiatrists know what to do can leave a big hole of uncertainty. Doubting that you yourself have any idea what to think may make it worse. As everyone on PR knows, this is a very complicated problem. But I don't think anyone is entitled to shut out reality on behalf of others.

 

[worldbackwards]

Isabel said:

I'd had some helpful discussions with Action for ME in the past few months

I'm now not surprised she wrote such a poor article. [edit: And thought she was being "supportive"!] It would be great if @Action for M.E. were a bit less rubbish.

I know, I thought that was by far the most telling part of the reply. I can understand why she was so ill-prepared for what came next.

A serious question: What is wrong with Action For ME?

I follow politics and find it useful to try and understand, whenever the Tories are prosecuting some grievous wrong, what it is they think they're doing that justifies it, to look at them as wrong rather than bad. Looking at it from that perspective though, AfME simply baffle me.

Their support of PACE and the CBT/GET agenda in general benefits no ME patients at all, their continuing conflation of ME and Chronic Fatigue as if they belong in the same place (including the support given to psychiatrists who share these views) has helped lead to the problems with inappropriate treatments which they then moan about in the media.

I did think their support for PACE could be an example of wanting Sharpe and co to be inside the tent pissing out rather than otherwise, but this rather fails when they turn round and simply piss all over everyone inside it as they were always bound to do.

But yet I see people involved who clearly seem to think they're doing some good, who genuinely want to help. Could it be the lack of senior figures (as far as I can tell) who are actually ill, who feel in their gut where their agenda actually leads - round and round in the same tedious, damaging circles? Why are they so desperate to support a status quo that offers us nothing?

I saw someone from their stable on Twitter yesterday, someone who's desire to help patients I have no doubts over whatsoever, saying that "I have great confidence in Sonya's vision and commitment." I don't understand this sentence on so many levels.

WHY WHY WHY?

 

[charles shepherd]

I speak to a lot of journalists and I'm afraid the final paragraph in Isabel's reply is depressingly familiar:

However the abusive response I received from others is enough for me to wish you all the best of luck in finding other sympathetic journalists who are willing to write about this illness. It is an issue very close to my heart and yet I wonder whether there is any point in trying to stick up for people who I desperately want to help when of all the controversial issues I cover, this one elicits such a response. I hope that this is as useful feedback from me as yours has been.

There is a very very tiny minority of people with ME/CFS, or claim to have ME/CFS, who send abusive emails to researchers they don't like/don't agree with. The same situation applies to journalists and to myself.

There journalists out there who are willing to start looking at what is happening in a questioning manner - as I believe Isabel was doing - but they are soon dissuaded from doing so if they feel that they, too, are under attack

There are lessons to be learnt here when it comes to trying to get the UK press on our side.......

 

[charles shepherd]

And her reply is that despite how important this is to her, and despite the facts of the case - very nicely set out by yourself and Prof Edwards - she's going to run off and sulk becasue she can't bear that anyone might have responded to her appaling hit-piece in anything other than a 100% perfectly grovelling tone-of-voice.

No credibilty, at all.

I speak to a lot of journalists and I'm afraid the final paragraph in Isabel's reply is depressingly familiar:

However the abusive response I received from others is enough for me to wish you all the best of luck in finding other sympathetic journalists who are willing to write about this illness. It is an issue very close to my heart and yet I wonder whether there is any point in trying to stick up for people who I desperately want to help when of all the controversial issues I cover, this one elicits such a response. I hope that this is as useful feedback from me as yours has been.

There is a very very tiny minority of people with ME/CFS, or claim to have ME/CFS, who send abusive emails to researchers they don't like/don't agree with. The same situation applies to journalists and to myself.

There journalists out there who are willing to start looking at what is happening in a questioning manner - as I believe Isabel was doing - but they are soon dissuaded from doing so if they feel that they, too, are under attack

There are lessons to be learnt here when it comes to trying to get the UK press on our side.......

 

[worldbackwards]

There are lessons to be learnt here when it comes to trying to get the UK press on our side.......

Absolutely. I'm sure everyone remembers that time they called someone a bitch on Twitter and everyone rallied round their cause, as no-one said ever.

 

[Chrisb]

Seems to me like a classic case of entryism. Take over an established organisation and reshape it towards different ends. With luck no one will notice and accept all that they say as emanating from the original reputable charity.

 

[Bob]

There is a very very tiny minority of people with ME/CFS, or claim to have ME/CFS, who send abusive emails to researchers they don't like/don't agree with. The same situation applies to journalists and to myself.

Apart from Coyne's unfortunate tweet, from what I saw on Twitter, Isabel wasn't being abused but she was being challenged in a forthright manner. It seems to have been questions about her journalistic and intellectual rigour that offended her most. 'ME militant' (a slightly ironic moniker, in this case, i think) asked some exceptionally reasonable questions but she took great offence because her integrity was challenged. Journalists can have exceptionally thin skin despite the game they are in.

 

[Gijs]

Good journalism is objective not sympathetic. I think some nasty emails may never be a reason to stop the continuation of good journalism. It is now being used as an excuse to stop with this topic. It is a very exaggerated reaction of this journalist. Even sharp criticism is perceived as abuse. What is total nonsense.

 

[Jonathan Edwards]

Apart from Coyne's unfortunate tweet, from what I saw on Twitter, Isabel wasn't being abused but she was being challenged in a forthright manor. It seems to have been questions about her journalistic and intellectual rigour that offended her most. 'ME militant' (an ironic moniker, in this case, i think) asked some exceptionally reasonable questions but she took great offence because her integrity was challenged. Journalists can have exceptionally thin skin despite the game they are in.

Indeed, I was about to say that the patients have been uniformly charming and civil. It seems to be their advocates who are getting over the top. A lesson for me maybe. Yet considering the abuse I have had from peer review and journalists over the years myself during my attempts to do some science I cannot say that I feel it is a matter of fairness - just playing the ball rather than the man, as ever.

 

[charles shepherd]

Apart from Coyne's unfortunate tweet, from what I saw on Twitter, Isabel wasn't being abused but she was being challenged in a forthright manor. It seems to have been questions about her journalistic and intellectual rigour that offended her most. 'ME militant' (an ironic moniker, in this case, i think) asked some exceptionally reasonable questions but she took great offence because her integrity was challenged. Journalists can have exceptionally thin skin despite the game they are in.

This is from her PPS on the blog:

I’m very happy to add these points, and to engage in a debate that helps those with ME/CFS get a better hearing. I’m not happy to engage with people who call me a ‘bitch’,

Resorting to this type of language is not helpful and is counter-productive

I hope that Isabel will decide to return to this subject - I cannot find any other well known journalist at the moment who is willing to criticise the Daily Telegraph and ask Rod Liddle to calm down…...

 

[meadowlark]

the abusive response I received from others is enough for me to wish you all the best of luck in finding other sympathetic journalists who are willing to write about this illness.

This is really too bad. I wish she had more guts. You need them in journalism. When I was writing, checking and editing (Toronto), mags and papers weren't even on the net, so I don't know what it's like to be called a b*tch on twitter. But I was certainly terrorized on the phone. (You'd be amazed how quickly the construction industry will will imply your possible future beneath a sidewalk.)

You have to develop not just a thick skin but a certain level of nerve to write investigative pieces. And it seems to me that in the UK, on many ME issues, you can’t be just a science writer. You must be an investigative reporter too--someone with an innate sense that the story's been corrupted, someone's pulling a fast one.

A question to those in the UK: From over here (Canada/US), it seems to me that the ideal hook for an ME piece (and editors always want the hook) is that “the UK has it wrong and America has it right.” Then a piece could simply contrast what is accepted about ME/CFS in the States with the accepted line in Britain. Contrast the update on PACE with the new attitude at the NIH, In other words, show Britain to be medieval, a backwater (on this issue).

Would an article that said that sort of thing find any takers? Or would it be considered beyond the pale?

(Adding, in an edit: I'm not sure many readers will read critiques of methodology because they don't understand them. But I think they would read a bold piece that, right out of the gate, says "The PACE trial is irrelevant" --because Britain, in contrast to the rest of the world, is in the dark ages.)

 

[snowathlete]

I speak to a lot of journalists and I'm afraid the final paragraph in Isabel's reply is depressingly familiar:

However the abusive response I received from others is enough for me to wish you all the best of luck in finding other sympathetic journalists who are willing to write about this illness. It is an issue very close to my heart and yet I wonder whether there is any point in trying to stick up for people who I desperately want to help when of all the controversial issues I cover, this one elicits such a response. I hope that this is as useful feedback from me as yours has been.

There is a very very tiny minority of people with ME/CFS, or claim to have ME/CFS, who send abusive emails to researchers they don't like/don't agree with. The same situation applies to journalists and to myself.

There journalists out there who are willing to start looking at what is happening in a questioning manner - as I believe Isabel was doing - but they are soon dissuaded from doing so if they feel that they, too, are under attack

There are lessons to be learnt here when it comes to trying to get the UK press on our side.......

You're not wrong Charles but I wish people would put things into perspective a bit. Let's face it, one single person can say something over the top, I dont know who, but whoever, and who can stop them? There are several million people with this disease, and the staggering majority are very decent. Of course there are one or two unpleasant people, as in any large number of people. We have innocent children with this disease - like an 8 year old girl who lived down the road from me who was in the Mirror today, and they, along with all of us, need help. It's no good abandoning her because some other person who purports to have MECFS hurled some abuse.

Journalists can't expect patients to police other patients (heck they may not even be patients. We don't know who they are most of the time and if we did we don't have any means to control them!). if we reverse things a moment, there have been some vile articles, such as Liddle's piece, but would it be right for me to blame the author of the very good Mirror article today because they are both journalists? Of course not, it's not her fault that one of her colleagues is unpleasant and wants to throw insults my way. My solution, ignore Liddle's stuff. Read the Mirror author's stuff instead.

I understand it shouldn't happen, but it isn't my fault either. Why punish me for it? Why not just put the person on ignore, report it to authorities if it is serious, speak to the real patients and help them by getting on with a good job? Maybe I am being too idealistic and imagining that some journalists became journalists because they want to make the world a better place, or at least write accurate information. We need people who can put things in perspective and come do that. And there are lots of journalists like that. I follow a dozen good journalists who have written about MECFS at one point or another, and I have sent all of them my thanks every time they have done it. I am not the only one. There may be one or two bad eggs but there are hundreds of thousands of good eggs just waiting to show their gratitude and support to journalists who report on them fairly.

 

[Bob]

This is from her PPS on the blog:

I’m very happy to add these points, and to engage in a debate that helps those with ME/CFS get a better hearing. I’m not happy to engage with people who call me a ‘bitch’,

Resorting to this type of language is not helpful and is counter-productive.

Charles, in case you've missed some details, the indefensible 'bitch' comment came from James Coyle, an academic. He's wasn't part of the ME community until 5 days ago. And that was the only personalized rude comment I've seen on Twitter. Equally, the editor of the spectator (Fraser Nelson) referred to the "CFS trolls" on Twitter, as if that's a helpful and constructive comment.

 

[Wildcat]

@charles shepherd wrote: "I cannot find any other well known journalist at the moment who is willing to criticise the Daily Telegraph and ask Rod Liddle to calm down…..."

Well, no. But there never is any shortage of journalists to promote PACE and be derogatory about the disease and the patients. Its not on, blaming the patients for what are editors and journalists' choices to promote PACE, psychologise and otherwise misrepresent ME. They have the power to publish, we don't.

 

[BurnA]

Charles, in case you've missed some details, the indefensible 'bitch' comment came from James Coyle, an academic. He's wasn't part of the ME community until 5 days ago. And that was the only personalized rude comment I've seen on Twitter. Equally, the editor of the spectator (Fraser Nelson) referred to the "CFS trolls" on Twitter, as if that's a helpful and constructive comment.

If she wanted to do the right thing she wouldnt have let one comment put her off. It sounds like she wanted out and the first opportunity she took. Pity.

Pity that she couldnt admit she wanted out instead of blaming others. Nobody genuine gives up the fight because of one inappropriate comment.

 

[TiredSam]

Her PPS was probably just a way of covering her ass on the way out of the door.

 

[Esther12]

I cannot find any other well known journalist at the moment who is willing to criticise the Daily Telegraph and ask Rod Liddle to calm down…...

Personally, I wouldn't spend your time on it, especially if work like Isabel's is the best we can hope for.

If we're going to get a more independent analysis of the PACE trial and related issues, then that could really change things. We might be able to show people that we were right, rather than grovel for a compromise that is terrible, but less openly terrible than Liddle's.

I appreciate what a difficult time it's been for Charles and the MEA in the UK press, but there is a possibility that the nature of the debate is changing in a way which will throw out the old rules. If PACE criticism continues to grow and spread amongst academics and outside of patients that will matter much more than this sort of coverage.

Maybe this won't happen, but it's easy easy to start assuming things are going to stay the way we're used to, and I thought I'd express some hope for real change in the UK media, coming from outside.

 

[Starlight]

I find her comments quite frightening. These journalists are the people we trust will report to us on the most emotive divisive issues in our society. The idea that one can hold up their hands and walk away from a real story with consequences for the health and lives of mlllions worldwide over being called the B word or a minority of unfavorable tweets is very concerning. I cannot believe that dealing with the cut and thrust of the heightened emotion of social media is not now part of a journo's job description, the comments section on every newspaper would suggest it's an unfair but utterly mundane part of the job these days. I'm afraid it all sounds like a rather hollow excuse to me. While I wouldn't chose to express myself in such a manner I could not blame James Coyne for this. How very,very disappointing.

 

[adreno]

Actually, Coyne didn't call her a bitch. He said she made a bitch comment. There is a qualitative difference.

 

[Valentijn]

A serious question: What is wrong with Action For ME?

They've historically had very bad medical advisers. I think the youth faction still has a bad one.