Coyne: Patients writing about their health condition, abused by a peer reviewer, silenced by BMJ

[Esther12]

I didn't think that I can get any more appalled by the British medical establishment. How do they keep doing this? It's that so many of them talk as if they're decent human beings that makes it so much worse.

 

[Forbin]

The reviewer's comment #11, which condemns the paper's use of the term "mere" in relation to "fearful cognitions," does seem just a tad on the self-righteous side.

To borrow a line from Mark Twain, it seems written with the sanctimony of one who's waiting for a vacancy in the Trinity.

 

[Dolphin]

https://twitter.com/i/web/status/863402703971643392

 

[Chrisb]

It is possible that this Review could be of some importance in helping us understand something about the origins of CFS. I am sure that this is wholly unintended.

There is much to be said against this reviewer but there are others who will undertake that. Anyone capable of writing "may God forgive me for the part I played in destroying the lives of some of these vulnerable patients" is deserving of some understanding and sympathy.

1. In one of his papers Wessely indicated that aetiology was unimportant. Some (well, to be precise, I) assumed that this was a considered, fundamental, philosophical position. We now learn that "We never took a social history and never carried out a mental state examination. Come to think of it we never even took a proper past medical history". Little wonder that they didn't wish to consider aetiology. Para 4) or red 7.

2. At Para 1) "These authors make no attempt whatsoever to acknowledge the heterogeneity of patients who are labelled with a diagnosis of Chronic Fatigue Syndrome (and in my experience the even greater heterogeneity of the smaller number of patients who are labelled using the diagnostic concept of (ME))."

This is a double edged sword. If it has been clear from the beginning that CFS was designed as a heterogenous diagnosis, what reason could there be for believing that all with the diagnosis would respond similarly to any given treatment? This seems to admit the failure of the whole "intellectual" basis of PACE.

3. The admission as to heterogeneity together with the emotional comments -"They have insulted and demeaned a subgroup of patients with severe and prolonged fatigue"-"Shame on you"-tends to show what this is all about. "Have they never met anybody with near 100% disability due to fearful cognitions...have they never spoken with patients who are at risk of dying due to fearful cognitions and their consequences? I have" Para 11, red 13.

There is a saying "Difficult cases make bad law." The same is no doubt true in medicine. It seems that what was required was what was always suspected - a solution that offered some sort of answer for some of the patients seen in the clinics of some psychiatrists. Those not seen by them seem not to have been worthy of consideration.

 

[Solstice]

Have they never met anybody with near 100% disability due to fearful cognitions...have they never spoken with patients who are at risk of dying due to fearful cognitions and their consequences? I have

This just weirds me out tbh. How do you prove it's because of fearful cognitions that they're dieing? Didn't they use to say the same about aids, cancer and other diseases like it? Aren't people just fearful because they are dieing? How can he prove that it's really the fearful cognitions that are leading to death and that it's not just something that accompanies death. Logically people that feel they are dieing would be fearful, wouldn't they?

*edit* Also, the I have bit makes it more about things he's perceived than rather something that research seems to conclusively point out.

 

[Woolie]

There is a saying "Difficult cases make bad law." The same is no doubt true in medicine. It seems that what was required was what was always suspected - a solution that offered some sort of answer for some of the patients seen in the clinics of some psychiatrists. Those not seen by them seem not to have been worthy of consideration.

Interesting idea. So they "know" what they mean by CFS, its the people they've encountered in their clinics. But then when they try to define the characteristics of this group, they end up with a group that's quite different?

That's possible, but its also equally possible that what they believed they saw in their clinics never really existed except in their heads.

Poor shrinks, so convinced that they were onto a real "psychiatric" problem, so convinced they could help. This person seems to be a true believer. So utterly convinced that nonbelievers are going to do real damage to the great saviour that is CBT and GET.

But then again, the road to hell is paved with good intentions...

 

[A.B.]

Interesting idea. So they "know" what they mean by CFS, its the people they've encountered in their clinics. But then when they try to define the characteristics of this group, they end up with a group that's quite different?

Didn't PACE recruit from exactly these clinics? Were they not selective in who could participate, presumably to maximize CBT/GET responses?

I'm leaning more towards them seeing a disorder that doesn't really exist. The premise of false illness beliefs maintained by a fear of exertion is pretty ridiculous to start with.

Since their methodology is so poor they can't rely on research to correct their biases either, on the contrary it probably reinforces them.

 

[lansbergen]

But then again, the road to hell is paved with good intentions.

Unfortunately

 

[Wolfiness]

This just weirds me out tbh. How do you prove it's because of fearful cognitions that they're dieing? Didn't they use to say the same about aids, cancer and other diseases like it? Aren't people just fearful because they are dieing? How can he prove that it's really the fearful cognitions that are leading to death and that it's not just something that accompanies death. Logically people that feel they are dieing would be fearful, wouldn't they?

*edit* Also, the I have bit makes it more about things he's perceived than rather something that research seems to conclusively point out.

I think he's talking about people with demonstrable delusions as a result of
severe OCD, phobias, paranoias etc. that cause them to e.g. starve themselves to death like Kurt Gödel did.

 

[Wolfiness]

I think it is a different paper since this one was published some time ago in a different journal.

Yes it is a different paper:

https://twitter.com/i/web/status/851283339361214467

 

[Solstice]

I think he's talking about people with demonstrable delusions as a result of
severe OCD, phobias, paranoias etc. that cause them to e.g. starve themselves to death like Kurt Gödel did.

Doesn't that still have an organic cause that causes those delusions?

 

[Jonathan Edwards]

Doesn't that still have an organic cause that causes those delusions?

I don't think Wessely is suggesting there is no organic cause. He is suggesting that the disability is due to organic changes in the brain that impact on higher mental function, leading to delusion.

The false logic comes in suggesting that the solution to this is talking therapy. It has been agreed for a very long time that in general delusions are not amenable to talking therapy. You need ECT or psychotropic drugs or correction of an underlying biochemical disturbance.

It sounds to me as if this is Wessely in the review. Many of the comments would be justified if they were not used as the basis for false arguments. What comes through over everything else is the complete inability to admit he has no idea what he is doing and that other people might have an idea. It reminds me of Charles Ist complaining about being put to death for claiming divine powers.

 

[Binkie4]

@Jonathan Edwards @Chrisb

If it is Wessely, and I agree some of it sounds like him/ aka "the divine right of kings", what do you make of the statement " may God forgive me for my part in destroying the lives of some of these vulnerable patients."?

 

[Yogi]

It says West of Scotland:

The reviewer trained at Kings College as well. He collaborated with Simon Wessely on articles concerning chronic fatigue syndrome. I am not revealing his name, but in his review, he indicates that he is a psychiatrist who has mostly practiced in the west of Scotland.

 

[Chrisb]

If it is Wessely, and I agree some of it sounds like him/ aka "the divine right of kings", what do you make of the statement " may God forgive me for my part in destroying the lives of some of these vulnerable patients."?

I think it would be an error to believe this review to have been written by Wessely.

 

[Binkie4]

@Yogi @Chrisb

Ok- this does not support the Wessely theory.

But whoever wrote it, and in some ways it may not matter except that he is very influential, was the quoted statement sincere?

 

[trishrhymes]

I think it would be an error to believe this review to have been written by Wessely.

He doesn't need to do it himself. He has many acolytes doing his bidding...

 

[Chrisb]

But whoever wrote it, and in some ways it may not matter except that he is very influential, was the quoted statement sincere?

Only he will know, but I see no evidence causing me to doubt it.

 

[Binkie4]

@Chrisb

Sorry I am not yellow boxing. Hugely fogged this morning. Lying flat.

The evidence of lack of sincerity includes
- the tone of the whole piece
- lack of atonement
-continuing patient gaslighting
-no attempt at redemption

Sure there's lots more to add but am truly fogged, eyes closing etc.

That statement doesn't fit rest of piece. It even shows some awareness of effect on lives of patients i.e. Destruction.

Just seems very odd.

 

[Yogi]

https://twitter.com/i/web/status/859760143587827712

He is former editor of BMJ