BMJ editorial: GET and CBT advised for ME

[PhoenixDown]

He has his name on papers on lymphocyte activation, MHC genetics, epidemiology, brain imaging and other such things...

Halt The Presses Wessely Does Vitamin B Research
http://www.ncbi.nlm.nih.gov/pubmed/10450194

Abstract
Some patients with chronic fatigue syndrome say they benefit from taking vitamin supplements. We assessed functional status for the B vitamins pyridoxine, riboflavin and thiamine in 12 vitamin-untreated CFS patients and in 18 healthy controls matched for age and sex. Vitamin-dependent activities--aspartate aminotransferase (AST) for pyridoxine, glutathione reductase (GTR) for riboflavin, transketolase (TK) for thiamine--were measured in erythrocyte haemolysates before and after in-vitro addition of the relevant vitamin. For all three enzymes basal activity (U/g Hb) was lower in CFS patients than in controls: AST 2.84 (SD 0.62) vs 4.61 (1.43), P < 0.001; GTR 6.13 (1.89) vs 7.42 (1.25), P < 0.04; TK 0.50 (0.13) vs 0.60 (0.07), P < 0.04. This was also true of activated values: AST 4.91 (0.54) vs 7.89 (2.11), P < 0.001; GTR 8.29 (1.60) vs 10.0 (1.80), P < 0.001; TK 0.56 (0.19) vs 0.66 (0.08), P < 0.07. The activation ratios, however, did not differ between the groups. These data provide preliminary evidence of reduced functional B vitamin status, particularly of pyridoxine, in CFS patients.

 

[Valentijn]

Halt The Presses Wessely Does Vitamin B Research
http://www.ncbi.nlm.nih.gov/pubmed/10450194

Any time he conducts a study involving something other than faith-healing, the results are always either negative, or the conclusion is that it's too dangerous to use the treatment.

And sometimes, as was the case in this study, he's the last one listed and probably was not involved, except as either a resident "expert" or to supervise someone's thesis.

 

[Kyla]

Halt The Presses Wessely Does Vitamin B Research
http://www.ncbi.nlm.nih.gov/pubmed/10450194

You can un-halt those presses..

Here are some amazing gems from the discussion portion of the paper:

"In an interesting recent paper Baldewicz et al.15 describe evidence of
pyridoxine deficiency in recently bereaved homosexual
men, related to a measure of psychological stress."



And this:
"The most striking deficiency, that of pyridoxine, if present in the central nervous system, might account for the depressive features of CFS. "



It's amazing that even biological evidence is somehow psychological evidence!


Also...just as an extra bit of wtf...why does it matter that the bereaved men are homosexual? In what world is that relevant to vitamin status?!?

 

[Valentijn]

Also...just as an extra bit of wtf...why does it matter that the bereaved men are homosexual? In what world is that relevant to vitamin status?!?

The world of creating arbitrary subpopulations in patient cohorts in order to find a random result while failing to take into account the smaller patient sample when making significance calculations?

 

[alex3619]

The world of creating arbitrary subpopulations in patient cohorts in order to find a random result while failing to take into account the smaller patient sample when making significance calculations?

They love to treat ME and CFS as homogeneous patient cohorts, and then generalize to say if it doesn't work on everyone it never works. Indeed they seem to want to often say ME and CFS are part of a much larger cohort, that of unexplained diseases, and that this is a homogeneous cohort as well.

This is reflected in EBM thinking as well. They want to talk about evidence based treatments in large cohorts. Whether or not the individual patient responds differently is ignored. EBM is about the masses, not individuals, and if you are different to most in any particular treatment it may become harder to get good treatment in the future.

 

[Hip]

He [Wessely] has his name on papers on lymphocyte activation, MHC genetics, epidemiology, brain imaging and other such things.

From the following quote that I read some years ago, I had the impression that Wesssely's knowledge of matters immunological was very limited:

Wessely continued: "Graham Rook, an immunologist at UCL, put forward a theoretical paper in the Lancet to suggest that the British vaccination policy of multiple vaccines with pertussis would cause a particular immunological change, a shift from Th1 to Th2. Now, please do not ask me what that means because I do not really know. A man has got to know his limitations and my limitations are immunology".

Source: here.

 

[Jonathan Edwards]

From the following quote that I read some years ago, I had the impression that Wesssely's knowledge of matters immunological was very limited:

I think Dr Wessely is entitled to say something like that as a matter of simple modesty. He says he does not know what 'a shift from Th1 to Th2' means. Now I was a professor of immunology for several years and I can say categorically that I have no idea what 'a shift from Th1 to Th2' means. It is bullshit as far as I am concerned. Maybe Wessely had his tongue a little in his cheek?

 

[Valentijn]

I think Dr Wessely is entitled to say something like that as a matter of simple modesty. He says he does not know what 'a shift from Th1 to Th2' means. Now I was a professor of immunology for several years and I can say categorically that I have no idea what 'a shift from Th1 to Th2' means. It is bullshit as far as I am concerned. Maybe Wessely had his tongue a little in his cheek?

He also said something similar about ethics, in a paper where he was describing how best to deceive patients for their own good:

I have little experience of formal writings on ethics, and qualified from a UK medical school before ethics teaching was a part of the curriculum. Nevertheless, it seems clear that one of the principal ethical duties of the doctor is to tell the truth.
...
Patients will be more inclined to get better when they are provided with satisfactory explanations for their problems. By satisfactory I mean from the patient’s point of view - not satisfactory in a narrow scientific sense, but in a symbolic or even metaphorical perspective.
...
By now I hope I have convinced the reader that there are insuperable objections to the neurologist "telling it as he sees it". The loser will be the patient, who will be denied a chance of receiving effective treatment, who will be less likely to engage in such treatments at a later date, and more likely to shift allegiances to those who are less in a position to help.
...
. . . trust between doctor and patient may be better served by not telling the truth.
...
Given the clear ethical imperative against lying, what can be left? I suggest the solution is to say little. Is it imperative that the patient be told their illness is truly "all in the mind"? I suspect not.

Wessely S. “To tell or not to tell”: The problem of medically unexplained symptoms. In ; Ethical Dilemmas in Neurology (eds Zeman & Emanuel), WB Saunders, 1999, 41-53

Maybe he thinks ethics are bullshit too In any event, I doubt he has made any significant positive contribution to science, and he has most certainly done a great deal of harm. I also don't think modesty is really in his repertoire.

 

[Hip]

I think Dr Wessely is entitled to say something like that as a matter of simple modesty.

Possibly, but I have never seen any work by Prof Wessely where he focuses on the "nuts and bolts" mechanics of the brain and body.

Like quite a few psychologists/psychiatrists, he seems by inclination to prefer theorizing at the level of mind, but as far as I can see, does not seem adept at or interested in exploring the nuts and bolts mechanical level of the brain and body that underpins mind.

Many people by inclination are not good at understanding the nuts and bolts mechanical level of the world; nothing wrong with that, as there are plenty of occupations available for such people; but I think these people ought to refrain from theorizing about diseases like ME/CFS, which although present with mental and cognitive symptoms, also involve neurological and immunological abnormalities.

To have a chance at understanding the whole picture of a disease like ME/CFS, I think you have to work well at both the level of mind, and at the nuts and bolts mechanical level of brain and body. And you have to have a knack for understanding how effects in one world might be underpinned by causes in another. That can be particularly hard to do: to see the cause and effects links across these two worlds.


Simon Wessely's theories of ME/CFS do in fact straddle the worlds of mind and matter, but his theories come across as more like quasi-religious ideas, rather than scientific ones. His basic theory is that ME/CFS may well be initially triggered by an infection, and may well initially be a real physical illness; however, he theorizes that after the infection clears, patients for some reason do not update their mental belief system regarding the fact that the pathogen has gone and that the illness has now passed; and so because these patients still believe they are ill, their ME/CFS symptoms remain and continue, in this psychosomatic fashion.

In short, Simon Wessely thinks that ME/CFS is due to this lack of update of your belief system: you are maintaining an out of date belief that you are ill, and Wessely posits that it is this belief itself which keeps you ill.

The most immediately obvious criticism of this theory is that it never happens in other areas of medicine. For example, in those who are sick with a simple bacterial infection, like say a painful tooth abscess, and given antibiotics to cure it, why don't some of those patients remain ill, because they inadvertently forgot to update their belief system regarding the state of their health? If lack of update of your mental belief system was a real cause of these assumed psychosomatic illnesses, we would expect to see this occurring throughout medicine, not just in ME/CFS.

 

[Snow Leopard]

I think we are reading far too much into what SW does or does not believe and it isn't exactly helpful.

He isn't an ally and lets just leave it at that.

 

[MeSci]

Simon Wessely's theories of ME/CFS do in fact straddle the worlds of mind and matter, but his theories come across as more like quasi-religious ideas, rather than scientific ones. His basic theory is that ME/CFS may well be initially triggered by an infection, and may well initially be a real physical illness; however, he theorizes that after the infection clears, patients for some reason do not update their mental belief system regarding the fact that the pathogen has gone and that the illness has now passed; and so because these patients still believe they are ill, their ME/CFS symptoms remain and continue, in this psychosomatic fashion.

In short, Simon Wessely thinks that ME/CFS is due to this lack of update of your belief system: you are maintaining an out of date belief that you are ill, and Wessely posits that it is this belief itself which keeps you ill.

The most immediately obvious criticism of this theory is that it never happens in other areas of medicine. For example, in those who are sick with a simple bacterial infection, like say a painful tooth abscess, and then given antibiotics to cure it, why don't some of those patients remain ill, because they inadvertently forgot to update their belief system regarding the state of their health? If lack of update of your mental belief system was a real cause of these assumed psychosomatic illnesses, we would expect to see this occurring throughout medicine, not just in ME/CFS.

Not wanting for a moment to support Wessely but phantom limb syndrome could be described as the mind failing to adjust to the fact that a (diseased/injured/painful) limb has been amputated, couldn't it?

However, rather than being a psychological/psychosomatic condition, I think that this has been quite well explained in terms of neurology. And I think there are neurological treatments for it.

 

[Hip]

Not wanting for a moment to support Wessely but phantom limb syndrome could be described as the mind failing to adjust to the fact that a (diseased/injured/painful) limb has been amputated, couldn't it?

However, rather than being a psychological/psychosomatic condition, I think that this has been quite well explained in terms of neurology. And I think there are neurological treatments for it.

That's a very good point, and a very good example. If only Wessely had dedicated his career to studying phantom limb syndrome instead of chronic fatigue syndrome, then God would have been in His heaven, and all would have been right with the world! Well, perhaps not everything would be right with the world, but at least ME/CFS research might have been in a better state than it is now.

 

[Hip]

@MeSci
Can you think of any other diseases or conditions in which a lack of update of your mental belief system causes symptoms or maladjustments?

Phantom limb syndrome might be a good candidate for this, given the anecdotal reports of mirror box therapy treating phantom limb pain.

 

[MeSci]

That's a very good point, and a very good example. If only Wessely had dedicated his career to studying phantom limb syndrome instead of chronic fatigue syndrome, then God would have been in His heaven, and all would have been right with the world! Well, perhaps not everything would be right with the world, but at least ME/CFS research might have been in a better state than it is now.

I wouldn't wish him on amputees, or any other patients.

 

[MeSci]

@MeSci
Can you think of any other diseases or conditions in which a lack of update of your mental belief system causes symptoms or maladjustments?

Phantom limb syndrome might be a good candidate for this, given the anecdotal reports of mirror box therapy treating phantom limb pain.

Not offhand - I will post them here if I think of any. Hopefully others will do the same.

I don't think that anecdote will be enough on which to base an argument, so I did a Highwire search. There is a 2007 review here. It seems that evidence for physiologically-based treatment is not as strong as I had hoped/thought, but the review has some interesting, educated theories and other info.

 

[Sasha]

Mega-post by Cort on this (too long for me to read, but he doesn't sound too happy):

http://www.cortjohnson.org/blog/201...an-mecfs-researcher-the-case-of-andrew-lloyd/

 

[Valentijn]

Mega-post by Cort on this (too long for me to read, but he doesn't sound too happy):

http://www.cortjohnson.org/blog/201...an-mecfs-researcher-the-case-of-andrew-lloyd/

I'm usually not too impressed by Cort, but it was a very good response over all. Though I think he's still giving CBT and GET too much (any) credence.