What we're not being told about ME - UnHerd (Tom Chivers)

After sleeping on the problem, I think it is possible to take a more benign view of Chiver's tweet. He managed to "smoke out" the opposition and crysrallise, to some extent, their views. It seems to have taken us further forward. No-one gets everything "right" on this subject.

This opens up a new line of enquiry: what could be discussed at meetings between NICE and objectors if NICE are to remain within their remit and not end up in breach of their procedural protocols? But that is a different thread.
 
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I think we should cut Tom a break. The second article clearly ends by saying it's not his own opinion. I think he just gave someone a right of reply after they complained, and so he aired their views as a counterbalance to the first article.

At this stage, trying to correct him or swamp him with additional facts is likely to alienate him and drive him into the hands of the two people who spoke to him for the second article. That would be an own-goal if you want more articles like the first.

Give him space and trust that the first article (and the article on LP a few years ago) are more reflective of his own opinions. He may publish something good again in future, but that's less likely if he gives up on us (or worse, sees us as extremists).
 
adambeyoncelowe said:
I think we should cut Tom a break. The second article clearly ends by saying it's not his own opinion. I think he just gave someone a right of reply after they complained, and so he aired their views as a counterbalance to the first article.

At this stage, trying to correct him or swamp him with additional facts is likely to alienate him and drive him into the hands of the two people who spoke to him for the second article. That would be an own-goal if you want more articles like the first.

Give him space and trust that the first article (and the article on LP a few years ago) are more reflective of his own opinions. He may publish something good again in future, but that's less likely if he gives up on us (or worse, sees us as extremists).
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Thank you @adambeyoncelowe

I completely agree. I appreciate Chivers tackling this subject. We are in the thick of this, many of us for decades. We, each in our own ways are subject experts. For an outsider to take up this topic, research, write and publish it is a big undertaking. To do so in the space of few days is a considerable task.

Many in Canada, as elsewhere have tried for decades to garner interest and articles from the press, with not much success, given the effort expended by those working on this. I would not wish to see this journalist and others alienated. It's very difficult to get anyone interested, let alone write about it.
 
Standing back it may be important to realise just how easy it may be not to realise how muddled and self-serving the thinking of medical practitioners can be - even experts, maybe especially experts.

The WHO has recently decreed that traditional Chinese medicine should be give the same respect as western medicine. Western medicine, like TCM, was for centuries based on complete fairytales. Quite a lot still is. Rehabilitation as a speciality was set up to provide some way of dealing with the huge number of war casualties - to provide some framework for people while returning to some new level of function. It was never based on tested methods although some testing has gone on in recent years.

And GRADE has been adopted by NICE and Cochrane and pretty much every other relevant body despite being nonsense. It may be hard for a journalist to believe this. The people who see the situation for what it is are the engineers, who have always had to stick to real evidence of safety and efficacy because they can be sued for getting it wrong.
 
Art Vandelay said:
Rubbish. Requiring PEM is hardly 'new'.

The Canadian Consensus Criteria requires PEM and was published in 2003. The ICC also requires PEM and was first published in 2011. The IOM report was 2015.

A half-decent journalist could have discovered this in two minutes of searching the internet.
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I think the big thing with requiring PEM is the IoM guidelines which came from an independant well respected body as part of their review process.
 
An abnormal response to exercise was the prime symptom in the long term Royal Free patients whose experience defined ME. That was almost 70 years ago.

It was CFS and the emphasis on fatigue that was forced onto a previous syndrome not the other way round.

They lie about everything.
 




Seeing some of the comments on twitter, I don't think it's surprising that he's getting more annoyed. As a group, we seem quite good at pushing people away rather than persuading them of anything.

I know I'm more interested in pointing out problems than praising good things, but lots of people doing that does take an emotional toll that we don't notice. And some of the criticism Chivers is getting is poorly explained, too strong, or just insults.
 
I think Tom Chivers is learning what it is like to be used by journalists. The boot is on the other foot.
Most times I talk to journalists I know they will mess up and use arguments upside down without checking and focus entirely on their agenda. Tom is now seeing what it is like to be 'misinterpreted' all sorts of ways be people according to their agenda.

If journalists want to play the 'I'm only trying to help' card then they need to get basic things right. Tom has not done badly but peevish tweets are not cool in this context.

I think the reason why there are so many angry people with ME shouting is that there is something unusually stinking going on to shout about.
 
For some reason Chivers seems to think that NICE should be the target of his criticism. Yes, NICE have made life difficult this week but in the longer term they are the only people who seem to have reached a sensible viewpoint. Exactly the same thing happened with the O'Neill piece where the subeditor put in 'NICE trials' as if NICE had done the bad research.
 
Jonathan Edwards said:
I think Tom Chivers is learning what it is like to be used by journalists. The boot is on the other foot.
Most times I talk to journalists I know they will mess up and use arguments upside down without checking and focus entirely on their agenda. Tom is now seeing what it is like to be 'misinterpreted' all sorts of ways be people according to their agenda.

If journalists want to play the 'I'm only trying to help' card then they need to get basic things right. Tom has not done badly but peevish tweets are not cool in this context.

I think the reason why there are so many angry people with ME shouting is that there is something unusually stinking going on to shout about.
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There is something unusually stinking going on, but a lot of patients make things worse (often including me). Shouting about things, especially when you have no real power, isn't always useful, and especially not if people aren't persuasively explaining why they're shouting.

I just saw VES post this and it made me think it's worth trying to go through those sorts of questions more. People posting angry and over confident messages are a real problem.

Valerie Eliot Smith said:
Before I write anything, adopt any course of action or respond to requests for advice (public/private), I carry out an assessment based on the following questions:
  1. What is the purpose of this action
  2. What is the likely benefit to the ME community
  3. What is the possible harm to the ME community
  4. How significant is the risk of unintended consequences
  5. Is there a chance that I'm doing this in order to boost my own ego rather than benefit the ME community
  6. What is the risk of harm to me personally
Inevitably, I sometimes get it wrong, as we all do. I constantly review my work and revise and adapt accordingly.
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Esther12 said:
I just saw VES post this and it made me think it's worth trying to go through those sorts of questions more. People posting angry and over confident messages are a real problem.
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That's hardly an example of anything. Within a couple of hours of posting those lofty sentiments:
Before I write anything, adopt any course of action or respond to requests for advice (public/private), I carry out an assessment based on the following questions:
  1. What is the purpose of this action
  2. What is the likely benefit to the ME community
  3. What is the possible harm to the ME community
  4. How significant is the risk of unintended consequences
  5. Is there a chance that I'm doing this in order to boost my own ego rather than benefit the ME community
  6. What is the risk of harm to me personally
Inevitably, I sometimes get it wrong, as we all do. I constantly review my work and revise and adapt accordingly
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VES tweeted the following angry and over-confident message in a knee-jerk reaction to the latest NICE email.:



I'm sure many of us, myself included, saw the NICE email and thought "Fuck this, time to go nuclear". But we all paused, then discussed it amongst ourselves and got a range of opinions. It turns out that legal advice has been obtained already, and there are good reasons not to boycott the meeting (and also good arguments why it should be boycotted). Personally at the moment I don't think we have much choice other than to blindly trust in the NICE evil-genius masterplan for the time being.

Twitter is twitter. Chivers will sink or swim, depends what he's made of. Finger-wagging on S4ME isn't going to make a blind bit of difference to what happens on twitter, I personally never go near the place.
 
TiredSam said:
That's hardly an example of anything. Within a couple of hours of posting those lofty sentiments:


VES tweeted the following angry and over-confident message in a knee-jerk reaction to the latest NICE email.:



I'm sure many of us, myself included, saw the NICE email and thought "Fuck this, time to go nuclear". But we all paused, then discussed it amongst ourselves and got a range of opinions. It turns out that legal advice has been obtained already, and there are good reasons not to boycott the meeting (and also good arguments why it should be boycotted). Personally at the moment I don't think we have much choice other than to blindly trust in the NICE evil-genius masterplan for the time being.

Twitter is twitter. Chivers will sink or swim, depends what he's made of. Finger-wagging on S4ME isn't going to make a blind bit of difference to what happens on twitter, I personally never go near the place.
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I disagree with Valerie on a lot of things, and the quote of hers I included had her saying 'Inevitably, I sometimes get it wrong, as we all do.'

Finger-wagging is a lot of the content on S4ME. IMO it's worth aiming some of it at ourselves rather than just outwards to others. We'll sink or swim based on what we're made of too, and I don't feel too confident about that one at the moment.
 
Tom Chivers seems contrite and OK, he was relaying the other side he had heard.
But the way it was relayed was a bit slap dash I think.
The quotes from me are about general principles of trial design and clearly opinion. There wasn't an issue about whether or not I was manipulating historical facts. The College people were manipulating what happened at NICE. Tom should have checked that out.

He is a good lad but might not do too well interviewing Vladimir Putin!
 
Esther12 said:
I disagree with Valerie on a lot of things, and the quote of hers I included had her saying 'Inevitably, I sometimes get it wrong, as we all do.'

Finger-wagging is a lot of the content on S4ME. IMO it's worth aiming some of it at ourselves rather than just outwards to others. We'll sink or swim based on what we're made of too, and I don't feel too confident about that one at the moment.
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I think in the end we sink or swim through good analysis - I think that is what has happened with PACE and why they are finding it harder to be influential.

Its hard to even try to have any form of control on twitter and I think one issue is the number of people who want their say - but I was wondering if that is partly because we don't feel we have organizations that really give patients a good voice (hence everyone wants their own).
 
Jonathan Edwards said:
Tom Chivers seems contrite and OK, he was relaying the other side he had heard.
But the way it was relayed was a bit slap dash I think.
The quotes from me are about general principles of trial design and clearly opinion. There wasn't an issue about whether or not I was manipulating historical facts. The College people were manipulating what happened at NICE. Tom should have checked that out.
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David Tuller is setting him straight on Twitter.

 
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