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

[BurnA]

In my opinion Coyne has possibly done more to raise awareness of the unacceptable BPS research & reporting on ME/CFS in 5 days than years of us patients nicely and politely tweeting to each other and posting here in our little echo chamber. I don't think we should alienate him over one un-PC tweet.

Couldn't agree more.

 

[A.B.]

Nope. I let it slide because stuff like that isn't worth my time/energy. I did however make a mental note of it for future reference.

In my opinion Coyne has possibly done more to raise awareness of the unacceptable BPS research & reporting on ME/CFS in 5 days than years of us patients nicely and politely tweeting to each other and posting here in our little echo chamber. I don't think we should alienate him over one un-PC tweet.

Don't undersell patient efforts. The first steps are the hardest, and paved the way for later more refined critiques such as those from Tuller.

Not that having Coyne on our side isn't massively helpful. All the criticism has suddenly gained more credibility.

 

[Sidereal]

Don't undersell patient efforts. The first steps are the hardest, and paved the way for later more refined critiques such as those from Tuller.

Not that having Coyne on our side isn't massively helpful. All the criticism has suddenly gained more credibility.

I am not underselling patient efforts. I am infinitely grateful to patient efforts. Without patient efforts, the work of Tuller and Coyne would have been impossible. But the fact of the matter is that someone like Coyne with an established reputation, wide readership and no ME/CFS diagnosis can do enormously more to spread awareness of our cause than we patients can.

 

[eafw]

I don't think we should alienate him over one un-PC tweet.

No one is alienating him. No one has even suggested that. Just: "you don't have to call women b*tches, thanks" from maybe two or three people on these boards, it's absolutely nothing.

 

[Bob]

In my opinion Coyne has possibly done more to raise awareness of the unacceptable BPS research & reporting on ME/CFS in 5 days than years of us patients nicely and politely tweeting to each other and posting here in our little echo chamber. I don't think we should alienate him over one un-PC tweet.

Oh, whatever comments I've made about Coyne, I didn't mean to give the impression that I wanted him to be distanced from our community. I'm exceptionally grateful for what he's doing. His choice of words were unfortunate, and an argument has been had, and that's that as far as I'm concerned. I think the Spectator has done a lot of intentional damage and should apologise. Coyne made one slip with one word.

 

[Sidereal]

No one is alienating him. No one has even suggested that. Just: "you don't have to call women b*tches, thanks" from maybe two or three people on these boards, it's absolutely nothing.

He didn't call women bitches, he said one woman made a bitch comment.

 

[Sidereal]

His choice of words were unfortunate

No disagreement there.

 

[Scarecrow]

Coyne's words were ill-judged but they have been taken out of context. I'd have been pissed off with him if he had called her a bitch but he clearly did not.

Even if he had and - male or female - we've all been on the receiving end of abuse at some point - it would still have been a relatively minor incident. Who doesn't just shrug and get on with it?

By referring to her 'bitch comment', I think he was giving her credit for being better informed than she was and for having an agenda that she appeared to have when she was acting more in ignorance than malice.


At the same time, I very much appreciated the way that both Bob and MEMilitant conducted themselves but it's so much more important for patients to be irreproachable in their behaviour.

 

[Sidereal]

I see him taking heat for this on twitter and just I think we should be focusing our critical attention on our opponents not the guy who is trying to help us. Every minute he wastes on the fallout from that ill-advised tweet is a minute wasted not writing against PACE.

 

[SOC]

Let me see if I understand The Isabel Situation:

Isabel writes an article that's an equivalent of the following,
"My colleague wrote a nasty piece saying colored people are dirty, smelly criminals. I disagree. I even have a colored friend. I think colored people need help. There's a policy that is very helpful and should be pursued further. It's called slavery. Slavery works. We know it works because we can see all the pictures and books and films and accounts written by helpful journalists like me in which the colored people are cheerfully singing in the fields and doting on their master's children. This policy gives colored people a chance to be happy, with productive work and a roof over their heads. I'm sure my friend and other colored people would love to be able to have useful work and a home that would get them off welfare and out of public housing. These people are not smelly criminals, they just need help. The problem is that sometimes colored people get uppity and start complaining too much about the treatment they get. That doesn't help the situation. People don't want to help uppity ungrateful colored people. Colored people need to be gentler, quieter, and less scary if they want people to support their cause."

Not surprisingly, a very few people wrote back the equivalent of, "Isabel, you're an idiot. You know nothing about black people, slavery, or the issues facing black people today. Why don't you get educated before you write dangerous nonsense about topics you don't understand at all."

Isabel comes back with
"You People are SO ungrateful! Good luck finding sympathetic journalists willing to write about You People. If You People can't be properly appreciative of our efforts I don't see any reason to stick up for you."

Isabel, I'm sorry to have to be the one to tell you this, but your panties are showing.

 

[Esther12]

A somewhat heightened version of things there SOC. Slavery comparison not entirely apt imo. Maybe it does illustrate some of the emotions involved though.

 

[SOC]

A somewhat heightened version of things there SOC. Slavery comparison not entirely apt imo. Maybe it does illustrate some of the emotions involved though.

Fine, YOU find a better metaphor and write it up. Metaphors are never 100% matches. I think my metaphor highlights her attitude towards us, which is the point, not that CBT/GET=slavery.

 

[Esther12]

Didn't mean to have a go. I tend not to use metaphors much.

 

[WillowJ]

I'm not sure this is relevant, but a journalism professor I used to know told me that most journalism school students are there to learn how to be a public relations hack, as opposed to learning to be a journalist. I suspect he was correct: I audited a labor law class at Drake University, and I was the only "labor" person there - everyone else was learning to be a "Human Capital" manager.

Wow, all I took was English composition, not actually journalism, and I even learned to use more than one source. Actually I think I learned that by the 5th grade. Schools these days.

 

[SOC]

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

Such as... it ain't gonna happen unless we grovel and let them define who (they want the world to think) we are?

I'm beginning to think that cause is lost until the rest of the world sorts out the ME problem and the UK medical system and media are forced by worldwide public opinion to stop being nasty hateful bigots about ME. I'm not sure we patients have the power to force change in that arena. Better to focus our energy where something can be done with less effort and more effect.

Perhaps if all the energy spent in the past week fighting the UK media and medical establishment had been spent pushing the positive things happening in the US (Tuller, Coyne, the NIH announcement, the IOM report), the total end result would be more beneficial overall.

I think they're wasting our time and energy, and deflecting us from the important task of making real progress. And I think they know that full well.

 

[WillowJ]

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!

I agree with all of this except two things:

It seems in your practice networks BPS is rare-to-nonexistant, but this is not the experience of many patients (in the UK and elsewhere) who would seldom even get referred to rheumatology/immunology, especially once they were suspected to have ME. Some of us have even met some rheumatologists who told us BPS-y things. I agree that focusing on location is overly simplified and a not good strategy, but BPS is the guideline treatment and the default reaction that most of us get, most of the time.

It takes money to take out private insurance. A lot of patients are disabled for a long time before they know what is wrong. Everyone tells us our (basic screening) tests are fine or nearly fine, so we are fine. So we try to be fine. And ultimately get worse. We don't necessarily learn to question the first 1-3 doctors we saw right off the bat. So many patients become impoverished and don't have money for private insurance (or other expensive specialists that might be available in other countries).

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?

I don't think it's particularly unique. CBT is a popular treatment here, too. In one practice, I couldn't get any kind of sleep testing or treatment until I'd undergone sleep hygeine/CBT for sleep. Which my doc didn't think I needed, but he did want a sleep study.

That being said, I think more of the research comes from UK/Europe than here, but, we do have the Mayo Clinic and a few places like that (though I think they are less prolific publishers on BPS).

 

[alex3619]

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

I think we need to be careful in over-interpreting the situation. A good case can be made that people with high viral titres have a far better evidence base for treatment with antivirals than any of the CBT/GET research. I am happy to make that case using standard EBM procedures.

Many doctors and bureaucrats have simplistic interpretations of EBM, and much of the published EBM literature fails to meet minimal EBM standards, and this includes reviews and meta-analyses. I think doctors need evidence based practice, in which doctors are given the capacity and autonomy to evaluate the science themselves, and this should be part of ongoing medical training. Its not just about doing a short course.

I do understand the need for treatment guidelines such as NICE, but its at huge risk of the tail wagging the dog, with the accountants in charge and not the scientists, with consequent distortion of the interpretation of evidence.

 

[alex3619]

I wonder who the original inventor is that they are copying?

1930s speculation rebadged by Engels, and reformulated once CBT came along.

 

[alex3619]

You think it goes back to Freud?

Freud was a student of Charcot. That is where it started if you want to go back ... at least formally. He defined hysteria in the almost-modern context. Before then there were millennia of nonscientific thinking about things like evil spirits, curses, demonic possession and so on. The Hammer of Witches comes to mind.

 

[alex3619]

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.

Maybe a set of key ideas with references that people can use as a cheat sheet?