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

[Starlight]

Please professor Edwards write your article and do not be afraid to be forceful. The modern media audience rely on tone these days to tell them how important an issue is. I feel that we are being forced into a corner here to play the role of meek as a lamb and that is exactly where someone wants us. They want us as ineffectual as a lamb too.
I feel horrible encouraging you into the thunderdome of the media and I'd fully understand if you decided against it too,you already give a lot to us here but do consider it.

 

[Jonathan Edwards]

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?

For me, it would be off target. To be honest, the reason why NICE recommends CBT is that nobody either side of the Atlantic or Pacific has done any decent studies to show what works and what does not. We have had a number of red herrings, some preliminary studies, but nothing with the quality control we need. Coming at the scene from outside my impression was that ahead of the game are IiME running international workshops and setting up European collaborations so that people in the real research scene are working together irrespective of geography.

I do not regard the BPS approach as the UK approach to ME. I had never heard of it before I got involved with PR. Even at the CMRC meeting in Bristol the term was ridiculed. The practical problem we have is that we are supposed to have a comprehensive public insurance system for everyone and it has to offer whatever has an evidence base. NHS doctors have no option but to follow that. People in the UK can take out their own insurance and go to private physicians if they like but they rarely do. There is a very specific problem with interpretation of evidence for CBT in the NHS and I think we need to focus on breaking through that (as Charles has been doing for years here - MEA has been up there at the front for even longer). We also need to think hard about what goes in the vacuum, since no other therapy has any evidence base.

I am encouraged that government bodies in the US may now be prepared to question the evidence for CBT, but what I have seen so far is still tentative. Neither side of the Atlantic has addressed the problem head on, although David Tuller has now gathered a good collection of US spokespeople.

What we need is quality control of the science and I am not sure anybody gets brownie points up to now. I would like to change that without referring to geography!

 

[Sasha]

There is a very specific problem with interpretation of evidence for CBT in the NHS and I think we need to focus on breaking through that (as Charles has been doing for years here - MEA has been up there at the front for even longer).

Do you mean CBT in ME/CFS or CBT for all conditions generally in the NHS?

We also need to think hard about what goes in the vacuum, since no other therapy has any evidence base.

Testing and treating patients for common symptoms/comorbidities would be a good start - insomnia, orthostatic intolerance, pain, depression. We don't even get that as standard.

GPs aren't up to the job. PWME aren't even getting treated for this basic stuff.

 

[Jonathan Edwards]

Do you mean CBT in ME/CFS or CBT for all conditions generally in the NHS?



Testing and treating patients for common symptoms/comorbidities would be a good start - insomnia, orthostatic intolerance, pain, depression. We don't even get that as standard.

GPs aren't up to the job. PWME aren't even getting treated for this basic stuff.

CBT for ME.
GPs are an anachronism for all diseases. But that's another battle.

 

[A.B.]

I would like to change that without referring to geography!

The UK does seem to have a unique(ly strong) culture of psychobabble and CBT quackery. CBT is claimed to be effective for a variety of chronic illnesses, and the researchers all seem to be following a similar recipe. I wonder who the original inventor is that they are copying?

 

[Sasha]

CBT for ME.

Is the issue the inherently unblind nature of the intervention plus the subjective measures or is it something else?

You don't think the same problem(s) apply to GET for ME?

 

[Jonathan Edwards]

The UK does seem to have a unique(ly strong) culture of psychobabble and CBT quackery. CBT is claimed to be effective for a variety of chronic illnesses, and the researchers all seem to be following a similar recipe. I wonder who the original inventor is that they are copying?

There was an Austrian guy who ended up in Hampstead.

 

[A.B.]

There was an Austrian guy who ended up in Hampstead.

You think it goes back to Freud? Psychoanalysis is very different from the CBT that is being promoted. There must be more recent influence.

 

[BurnA]

Please professor Edwards write your article and do not be afraid to be forceful. The modern media audience rely on tone these days to tell them how important an issue is. I feel that we are being forced into a corner here to play the role of meek as a lamb and that is exactly where someone wants us. They want us as ineffectual as a lamb too.
I feel horrible encouraging you into the thunderdome of the media and I'd fully understand if you decided against it too,you already give a lot to us here but do consider it.

I agree totally with everything you said.
Forceful is the way to go, with a bit of shame and embarrassment pointed in the right direction.
If we have learnt anything in the recent days it's that people read headlines and not the detail. There's no point in politely pointing out the facts when they are already there to be read. If we want attention then we shouldn't be afraid of annoying some sensitive people.

 

[Marco]

I've said before that our problem lies in always reacting to press stories which usually results in less then considered comments that only add to the 'angry activist' meme and suggested that we proactively cultivate positive relationships with the press. Perhaps I was over-optimistic in this age of 24hr on-line content where any ME/CFS story has the same or less interest value as 'Kylie Jennner's latest instagram' and probably get's the same degree of fact checking.

On the other hand Tuller and Coyne have high visibility (and a degree of 'skeptic' gravitas) without needing to sell newspapers/subscriptions and have the time and expertise to dig deeper. It would be great if we could build on and expand a network of 'skeptics'.

Maybe getting the popular press on side is a non-runner but perhaps we might be able to draw up some material/guidelines to have ready so we're not just reacting every time.

 

[A.B.]

I think the CBT might be based on the fear-avoidance model described in Outline of a Fear-Avoidance Model of exaggerated pain perception (published in 1983). There is no abstract and Google didn't yield the full paper, but Wikipedia has a few things to say about it:

The fear-avoidance model (or FA model) is a psychiatric model that describes how individuals develop chronic musculoskeletal pain as a result of avoidant behavior based on fear.[1][2][3] Introduced by Lethem et al. in 1983, this model helped explain how these individuals experience pain despite the absence of pathology.

This model assumes that there is no pathology, and that therefore the problem must be somewhere in the head of the patient. Certainly sounds like Chalder's model of irrational fear of exercise in CFS.

 

[BurnA]

I've said before that our problem lies in always reacting to press stories which usually results in less then considered comments that only add to the 'angry activist' meme and suggested that we proactively cultivate positive relationships with the press. Perhaps I was over-optimistic in this age of 24hr on-line content where any ME/CFS story has the same or less interest value as 'Kylie Jennner's latest instagram' and probably get's the same degree of fact checking.

On the other hand Tuller and Coyne have high visibility (and a degree of 'skeptic' gravitas) without needing to sell newspapers/subscriptions and have the time and expertise to dig deeper. It would be great if we could build on and expand a network of 'skeptics'.

Maybe getting the popular press on side is a non-runner but perhaps we might be able to draw up some material/guidelines to have ready so we're not just reacting every time.

Agree again.
The more voices we have on our side the better. Tuller and Coyne are speaking up without any personal agendas. We need many more - it's easy to discredit a couple of individual people but not an army of intelligent voices. No journalist in their right mind will take on the combined voices of the scientific community, it's early days but the goal should be to build on this and seek out more brave people willing to speak up.

 

[Scarecrow]

I think the CBT might be based on the fear-avoidance model described in Outline of a Fear-Avoidance Model of exaggerated pain perception (published in 1983).

Don't know if this will help you get to the origins of CBT but I can tell you that my elderly neighbour took part in a pilot study of group CBT for a heart condition back in the early 1990s. My anecdote is very sketchy due to the passage of time but they were looking at CBT as an alternative to surgery.

In my neighbour's case she told me that it was helpful and she did not have surgery. I don't recall if that was her choice or medical advice.

I can't report to you what the outcome was for the group as a whole. I assume that the measurement may have been something like sudden death. It's a long time ago and she moved away.

 

[Cheshire]

The UK does seem to have a unique(ly strong) culture of psychobabble and CBT quackery. CBT is claimed to be effective for a variety of chronic illnesses, and the researchers all seem to be following a similar recipe. I wonder who the original inventor is that they are copying?

The problem is not CBT in itself, it's the belief that when you don't find an explaination for something, it's psychosomatic. Then you get the treatment that is fashionable in a precise place and time. (CBT in the UK, psychoanalysis influenced therapy in France even if many are pushing for EBM CBT here now).
Freud did not invent the concept of psychosomatic illness, but by putting it at the core of his theory, he gave it a great push. And I think there's a direct link with CBT approach, even if they wapped the whole thing with maladaptive thoughts and behaviours. It's still the mysterious mind over matter stuff.

 

[Jonathan Edwards]

You think it goes back to Freud? Psychoanalysis is very different from the CBT that is being promoted. There must be more recent influence.

I am sure there are but likely still in Hampstead.

 

[soti]

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.

Yeah. Glad Coyne is so fired up, but I can't see how resorting to bizarre ad hominem attacks as he has ("stupid," "bitch comment", "priggish asshole" etc.) is helpful, even if the facts and science are on our side, and even if outrageous things are being said by others--it's distracting and seems to run contrary to the goal of outreach and changing people's minds. I have to say, as great as it is to have Coyne involved, I'd rather see the attacks be on the actual poor science, as he does so well.

He does seem to be sort of walking some of his weird comments back though today. Sort of.

 

[eafw]

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

Different and yet still unacceptable, I'm pretty sure he wouldn't use an equivalent slur towards any of the disagreeable men he tweets to.

But, considering she works in journalism - a bastion of vulgar chauvanism - how come she didn't run screaming from the profession years ago as I can guarantee she will have heard much worse, from her own colleagues never mind anyone else.

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

It is an excuse, and every time journos start on with the "abusive ME activists" line our reply should be: "Irrelevant".

PACE is a fraud and they are complicit, they could be abused from here to kingdom come and PACE is still a fraud and the the sky is still blue.

They need to look at the facts and stop being such hypocrites about the mildest disagreement when they themselves use their platform to lie about and slander ME sufferers, at great cost to those of us on the receiving end of it.

Remember any response is labeled by them as abuse, and there is no way to appease that, but if on a rare occasion they get communications which genuinely warrant police investigation, then call the police, but again as far as the issue at hand is concerned : "Irrelevant". The sky is still blue.

 

[Seven7]

You do realize that you are in war with people more than capable to get into your heads, so for all you know they are posing as patients and being abusive to make it all even more confusing???? when I go to the net I can recognize most everybody. Is about the same plp commenting and doing activisum so if we cannot even see this plp anything goes..

If we engage in game of words, you will loos because they are trained to twist and redirect, is like having a discussion with the national debate champion.

So stick to facts, cite the studies, Do not try to reason or twist what they post, say. If we burry them w physical evidence and Publishing more articles reviewing the real literature. Is the only way to gain.

This is about $$$. Is so sad we have to literally fight for our lives while some only care about the politics and the money.

 

[eafw]

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.

Your posts are extremely civil, and you shouldn't need to censor yourself in response to the slanders. The spam thing could be a censorship of some uncomfortable truths, or some internet weirdness both are possible.

 

[BurnA]

We also need to think hard about what goes in the vacuum, since no other therapy has any evidence base.

I think this is worth thinking about, and I think it's both part of the problem and solution.


It would be better to have a vacuum rather than treatments based on bad science so the first step should be to remove CBT and GET.

Then what?

Well, then we have a situation where patients have absolutely no treatment options. ( officially )
Then politicians and the medical community should feel more obliged to spend money and focus on proper research because they can't hide behind PACE anymore. Who knows maybe the media would sympathise with patients who have absolutely no treatment options available to them ?

A vacuum would be better than what we have now. There is no pressure to fund research now because people can feel good about themselves that exercise has been proven to be beneficial for pwme.


The problem is that the regulatory bodies are afraid to withdraw PACE because it will reveal a vacuum, but until the vacuum is exposed nothing will get done. We shouldn't be afraid of the vacuum we should embrace it - and then start the campaign to fill it ! But let's worry about filling it when we have it.