• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Lady Mar writes to Prof Wessely

Status
Not open for further replies.

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Personally I find the way the PACE trial has been run and results kept hidden very worrying. It was a complete work of incompetance yet Wessely is still praising it as a well run trial. We need proper scientists with good scientific method looking at ME - nothing else should be acceptable.

Is he? Or is he saying that the two treatments are the only ones to have been shown to be effective (within caveats) and safe?

I do wonder if now those who are developing (or will develop) treatments e.g. drug treatments now or in the future will have to have their results compared to PACE.

Of course before PACE there was CBT and GET. I do not doubt that more was expected from PACE indeed to my (perverse) way of looking at things - and as I have said before - I think PACE did us some good.

If ME were an illness that some seem to have interpreted it as being pre-PACE - then the results should have been far better than even the touted 'moderate'. I think though in these letters (especially the last two), Wessely is referring to his clinical experience with patients and not the Trial itself.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
If ME were an illness that some seem to have interpreted it as being pre-PACE - then the results should have been far better than even the touted 'moderate'. I think though in these letters (especially the last two), Wessely is referring to his clinical experience with patients and not the Trial itself.

The same Simon Wessely who, if I recall correctly, in a letter to the editor of BMJ in 2000, had a 50% misdiagnosis rate? Under a definition in which misdiagnosis generally occurs at least 40% of the time? (That of course presumes the validity of the definition, which has never been properly validated.) To impress me SW would need to get a full cure of more than 40%, and a full or partial cure of at least 80%.That would be higher than expected bias.

Clinical experience as a basis of "proof" ... well, look up almost any therapy that is now discredited. Take Laetrile, a supposed cancer therapy. They had numerous cured patients ... who later died of cancer. They had anecdotal claims all over the place.

The reason why we have controlled trials with objective markers is to clearly separate bogus treatments from genuine ones. Personally, if I were a health administrator looking at cost effective treatments, I would stay with no treatment at all for most, and go with antivirals for those who have moderate to high viral loads. Same result but much lower cost on the one hand, to more expensive with very substantial results on the other. To make patients feel a little better, which is the outcome of many so-called succesful trials, I would send them a gift certificate. My treatment plan would, according to the published evidence, be probably more succesful (who doesn't get a boost from a gift certificate?) and much cheaper and easier to implement for no treatment, to more difficult and costly with antivirals on selected subsets, but with real measurable recovery.

Here is a challenge for the biopsychosocial researchers, which they should have no problem with because bio- is part of their paradigm. When we get a few more treatments properly tested and validated, such as rituximab and valcyte, then put CBT/GET head to head with real (not pretend) pacing, rituximab and valcyte. Then use ME or RA patients as an additional control group, in addition to idiopathic fatigue and CCC or ICC ME. Include a one and two year follow-up, and use the Stevens protocol and actometers to measure real physiological improvement. Then we will see.

Bye, Alex
 

user9876

Senior Member
Messages
4,556
PACE was a well run trial showing that it isnt effective, so now it shouldnt be recommended.

They had issues with cohort selection in that they had a very general selection guideline and had many patients with comorbid mental health issues. A well run trial would try to have a narrow selection to control for other variables or a massive sample set.

They needed to change the trial protocol and report different measures to the ones they set out to report.

They had no decent measurement system. That is nearly all measurements were based on patients perceptions and there treatments set out to change perceptions. They use patients perceptions as a proxy for their actual state but given their treatment they do not demonstrate that this is a safe assumption. Infact there is plenty of evidence that using patient surveys tends to overstate the results compared with accelorometer based activity monitoring.

They use the mean and standard deviation of non linear scales to demonstrate effectiveness. Using the SF-36 scale in this way is bad enough but the Chadler fatigue scale is a multidimentional scale that they arbitarily collapse into a single value.

They don't seem to have recorded any activity information for GET. That is we don't know how much patients activities increased. This makes it hard to replicate their results in the field.
 

user9876

Senior Member
Messages
4,556
Clinical experience as a basis of "proof" ... well, look up almost any therapy that is now discredited. Take Laetrile, a supposed cancer therapy. They had numerous cured patients ... who later died of cancer. They had anecdotal claims all over the place.


Bye, Alex
I don't think clinical experience can be used as proof of effectiveness but I do think it is very valuable in giving safety evidence where issues are noted. Even then clinical experiance shows the existance of side effects rather than any quantification. I worry that too many clinicials say that can't be a side effect as its not listed.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I don't think clinical experience can be used as proof of effectiveness but I do think it is very valuable in giving safety evidence where issues are noted. Even then clinical experiance shows the existance of side effects rather than any quantification. I worry that too many clinicials say that can't be a side effect as its not listed.

I agree to a point. However if you presume that the illness is psychogenic, how many side effects will you bother recording? How many will you dismiss? What about long term affects from long after you no longer see a patient? I am concerned about the patients who have left their care, not just the ones under their care.
 

user9876

Senior Member
Messages
4,556

Yes he is for example in the paper he wrote with charlotte smith (http://jnnp.bmj.com/content/early/2012/11/16/jnnp-2012-303208.abstract). In it they say:


The PACE trial is a very large (n=640) and well conducted (1 year follow-up rate of 95%) multicentre randomised study, funded by the Medical Research Council, Department of Health and Department of Work and Pensions, and ironically also the Scottish Chief Scientist’s office, and one of whose major centres included Edinburgh.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
The same Simon Wessely who, if I recall correctly, in a letter to the editor of BMJ in 2000, had a 50% misdiagnosis rate? Under a definition in which misdiagnosis generally occurs at least 40% of the time? (That of course presumes the validity of the definition, which has never been properly validated.) To impress me SW would need to get a full cure of more than 40%, and a full or partial cure of at least 80%.That would be higher than expected bias.

Clinical experience as a basis of "proof" ... well, look up almost any therapy that is now discredited. Take Laetrile, a supposed cancer therapy. They had numerous cured patients ... who later died of cancer. They had anecdotal claims all over the place...

How fortuitous. I was just familiarising myself with the following paper from January 2012. Only a survey of course but it was expressing concern about the ability of GPs to correctly diagnose as per NICE recommendation that they do perform this function in primary care.

In that paper up to 49% of referrals purporting to be CFS/ME were rejected. Not sure how that stacks up with your memory of 2000 or of the efficacy of clinical practice or indeed of the ME Services in general. But I happen to think that if more clinicians and not less felt more confident about their ability to diagnose CFS/ME (based on what we know/don't know today) then more people would get the 'correct' diagnosis and not less.

Try not to be put off by those involved won't you? :)

"These service evaluation surveys were conducted at the specialist CFS clinic at St Bartholomew's Hospital, London. This service accepts referrals from primary care for assessment and management of patients with CFS. All the referrals were routinely screened by both a consultant liaison psychiatrist and a consultant physician in infectious diseases. Once the referral had been accepted, the patient was offered an assessment that included a detailed history, physical and mental state examination and laboratory investigations. Management plans depended on the diagnosis following the assessment."

"Almost half (49%) of all patients referred to a specialist CFS service did not have a diagnosis of CFS. Thirty-seven percent of referrals, screened by both a psychiatrist and a physician, were declined at the point of referral, sometimes for more than one reason, of which 61% were for likely alternative medical and psychiatric diagnoses. A further 46% of patients assessed did not receive a diagnosis of CFS.

We expected a significant minority of referrals not to have a diagnosis of CFS, but did not expect that so many of the assessed patients would not have a diagnosis of CFS.

The strengths of this paper are that the two surveys studied referrals and assessments over the same 18 months period with a large number of cases. Both the surveys were carried out at similar times and the results are complementary.

The limitations of this paper are that it is based on two surveys of only one service; we cannot be sure that the rejected referrals did not have a diagnosis of CFS; and the information from this cannot answer the primary question on effective identification and management of CFS in primary care.

These figures are reflected in a study by Euba and colleagues, which showed that 44% of patients referred to specialist clinic did not receive a diagnosis of CFS.7 A more recent study found that 40% of patients diagnosed with CFS in a specialist centre did not have CFS.6 Added to our findings, this would suggest that between 40–50% of patients referred to specialist services do not have a diagnosis of CFS.

Patients with chronic fatigue in general have strong diagnostic associations with both psychiatric and medical conditions.8,9 Teasing these out to accurately identify patients with CFS, especially in the absence of confirmatory laboratory investigations, can be difficult.

Harvey and Wessely suggest that looking for common medical and psychiatric illnesses in patients with chronic fatigue will improve their rate of detection.3

They add that a basic mental state examination is the most productive tool, as depression is the most common exclusionary and co-morbid condition with CFS. The most commonly applied research diagnostic criteria for CFS stresses the importance of a mental state examination.10 Even specialist doctors trained in CFS can make errors of psychiatric diagnoses, with non-psychiatrists missing psychiatric diagnoses more than psychiatrists.11

A diagnosis of depressive illness is more likely than CFS when fatigue is relieved rather than exacerbated by exertion, when fatigue is not the primary symptom, and when low mood dominates the clinical picture..."

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3269106/
This would then hopefully lead to more appropriate treatments - for those alternately diagnosed at least ;) It is not very popular even to be seen 'associating' oneself with the notion that a psychiatrist/liaison psychiatrist should perhaps be involved at the point of diagnosis - is it?

Until such time as some "holy grail" of 'biomarkers' is found and can be turned into a suitable objective test; then excluding all possible alternate diagnoses appears sensible. Totally subjective of course - all this application of experience and knowledge when 'judging' patients and what they have to say...

Life is a right ***** at times. Still I am not one of those who believes that once you have this diagnosis you shouldn't be reassessed - you should be and fairly often too. A once a year assessment should suffice unless other symptoms appear in the interim. If something else is wrong with me then I personally would like to know and to be treated for it.

I do not fear psychiatrists. I'd prefer that an ME Service was populated or at least led by a physician with appropriate knowledge and experience; but I think that ruling out a possible psychiatric condition is important - as important as ensuring that any co-morbidity is identified.
 

user9876

Senior Member
Messages
4,556
l. But I happen to think that if more clinicians and not less felt more confident about their ability to diagnose CFS/ME (based on what we know/don't know today) then more people would get the 'correct' diagnosis and not less.

I would have thought that it would be better if clinicians were better at diagnosing other things. Its very easy for a GP to make an ME diagnosis rather than doing a proper set of tests. I'm constantly alarmed at doctors on twitter complaining about testing patients suggesting that it might lead to over treatment. The problem is not in doing the differencial part of the diagnosis and in considering other things.

I think there should be a diagnostic scheme for people presenting with chronic fatigue which would lead a clinician through a set of (staged) tests to help reach an appropriate diagnosis whether its ME, depression, sleep disorders or cancer. It constantly surprises me that there is little research on diagnosis. My thought would be some sort of baysian system for diagnosis looking at the discriminative power of a given test vs the set of likely diagnoses would be good. Also looking at combining the evidence from each of the different tests.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
PACE was a well run trial showing that it isnt effective, so now it shouldnt be recommended.

PACE was a highly manipulated trial, that still failed to deliver the result its authors and supporters desperately wanted.

I appreciate the above observations, and the resulting discussions...


But on a light-hearted holiday note, I thought maybe we could play a little Christmas game... :balloons: :)


Complete the following sentence...


PACE was a ...
 

beaker

ME/cfs 1986
Messages
773
Location
USA
I appreciate the above observations, and the resulting discussion...


But on a light-hearted holiday note, I thought maybe we could play a little Christmas game... :balloons: :)


Complete the following sentence...


PACE was a ...

ok I'll play

Pace was a lesser known reindeer, who was in charge of setting Santa's sleigh flying speed for Christmas deliveries. ( and hence the phrase "setting the pace " was derived ) :lol:
 

biophile

Places I'd rather be.
Messages
8,977
Dredging up the past:

There is a difference between Wessely reserving the right to change his mind from past or current views, versus, him actually changing his mind and moving on after admitting so. Surely the patients who thought XMRV was relevant only a few years ago have not only changed their minds since then but would freely admit to doing so when asked. Where are Wessely's admissions of changing his mind about CBT/GET and the importance of cognitive and behavioual factors in CFS? If he stands by influential statements made years ago, then they are still relevant.

ME as incurable:

As I recall, some people improved or even recovered from the ME epidemics, but most remained ill, especially when the symptoms became chronic. So it would not be fair to say absolutely incurable without any chance of improvement whatsoever. However, the ME epidemics mostly described the acute phase which is basically ignored in CFS research, where it would be reasonable to say that chances of full recovery after a few years of illness are slim. Unnecessary pessimism about prognosis is undesirable, but so would be misguided optimism; patients have a right to know that the odds are not in their favour, and not to be subjected to naive attempts at encouraging placebo or avoiding nocebo. Is it ethical to provide false hope to all patients in order for a few to benefit? Are cancer patients lied to in order to give them a better fighting chance?

PS: Somatic = bodily (is not synonymous with "psychosomatic"). Somatoform = appears to be bodily but lacking evidence of physical causes and with presumed major psychological factors. Somatization = (various meanings) interpreting symptoms as physical, or, experiencing/converting psychological distress as physical symptoms, and then seeking help for it.
 

biophile

Places I'd rather be.
Messages
8,977
Compared to most other CBT/GET studies, the PACE Trial was large and relatively well-conducted, although I have never seen Wessely comment on any possible methodological issues with the trial. Adding to user9876's example of Wessely's commentary on the trial:
A landmark trial on the management of CFS, known as the PACE Trial, was published recently in The Lancet. It tested four therapies: adaptive pacing therapy (APT), cognitive behavioural therapy (CBT), graded exercise therapy (GET) and standard medical care (SMC). Two treatments, graded exercise and CBT, clearly made a difference, although they certainly were not ‘magic bullets’. For those who appreciate these things, the trial is a thing of beauty, and the results confirm previous smaller studies and follow ups. We now have two treatments that we can recommend with confidence to our patients.

http://www.foundation.org.uk/journal/pdf/fst_20_07.pdf

Third, we know that, as with other chronic disabling conditions, addressing the pattern of beliefs, emotions and behaviours that CFS sufferers experience doesn’t explain why they got ill in the first place but can play an important part in treatment, as confirmed in the large and elegant PACE trial.

http://niceguidelines.files.wordpre...-syndrome-understanding-a-complex-illness.pdf

Bob said:
Complete the following sentence...
Pace was a ...
I think a few people on this forum are now wondering how a large polished turd can ever be a thing of elegance and beauty. Is such a comparison reasonable? As with Wessely's ridiculous speculation about other people having the impression that contradicting ME militants is more dangerous than insulting Islam (an impression fuelled by Wessely's own speculation of course), I can later claim that it was not me who thinks the PACE Trial was a large polished turd, I was merely speculating about other peoples' thoughts on the issue.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
First lets address the issue of belief in XMRV. Large numbers of us never believed in XMRV, yet we supported it. We believed in the possibility, and that we needed good science. As inadequate science was published, and unfounded irrational anti-XMRV hyperbole abounded, we stood by the necessity for good science. When the Lipkin et. al. study was announced and we waited for the science, I repeatedly said we needed to pay attention. Finally we might have good science. It was as good as we could expect. It replaced unfounded irrational hyperbole with data and reason. That was enough.

PACE was a ...

A modern myth propagated by the modern high priests of mental supremacy cults.

A dismal scientific failure, a blight on psychiatry, that was touted as a rousing success because the truth would have gutted psychosomatic medicine.

A shining beacon of Truth, the truth that modern psychiatry is pursuing ancient dogma and unfounded beliefs.

A testament to the failure of modern scientific publishing and editorials.

A testament to the failure of the medical and scientific communities, who to this day largely refuse to look at the data.

An example of evidence based medicine? No. Denial Based Medicine. DBM.

A steadfast example of the old school of psychiatric research, where the data is hidden yet the proponents can promote their pet theories on the unfounded claim that the data supports them.

A guiding light that shows the way, because in order to save psycho-psychiatry it will be necessary to refute everything PACE stands for, including their unscientific methodologies.


I have more, but I am expecting a delivery soon. I am sure others can come up with interesting comments.

Psycho-psychiatry can be saved, and I think deserves to be saved, but holding onto an obsolete unscientific paradigm is not the way.

Bye, Alex.
 

Roy S

former DC ME/CFS lobbyist
Messages
1,376
Location
Illinois, USA
The Countess of Mar brought up Elaine Showalter in relation to Simon Wessely in her first letter. Mary Schweitzer PhD wrote a review of Showalter' s book Hystories with reference to him.
 
"The reader searching for a summary of the literature on the disease syndrome CFS will be quickly disappointed, however. There is none, not in the text, not in the footnotes, not even in an appendix. Quotes were lifted seemingly at random from a few existing trade books on the subject, articles in such sources as "USA Today," "The Independent," "McCall's," and "Newsweek," and a single symposium held in London in May, 1992 (p. 130). The lone exception to this pattern came in frequent references to Showalter's London mentor, psychiatrist Simon Wessely. While including mention of Wessely's publications, however, she omitted all mention of existing published works in scholarly journals disputing Wessely's thesis."

http://www.cfids-me.org/marys/elainehtml

From what I've gathered she was criticized for what she claimed about ME/CFS and did an excellent job of playing the victim.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
There was a blog recently - connected to the award he won - on which he addressed this book from Showalter I seem to recall. Will try and dig it out if I can, Roy. Might help...

In a reply to one comment, Wessely said:

November 9, 2012 at 17:23

" I thought I had logged out of the blog, but still seem to be getting updates via e mail! I simply couldn’t resist replying to this.

1. In 1987 I was working at the National Hospital for Neurology in Queen Square, I wasn’t working In Glasgow. So I was describing the reactions of the neurologists, of whom there were dozens, around me. I certainly knew that Peter Behan had a different view, but as I am sure he would agree, he was in a minority of neurologists then and still is now.

2. You ask if it is true that I endorsed Elaine Showalter’s book “Hystories”/ Why did you think that I did? Not long after she published that, I was fortunate enough to meet her socially, and we have remained friends ever since. But did I endorse it? No. I didn’t agree with it. So why didn’t I make that public. Actually I did. http://www.simonwessely.com/Downloads/BookChapters/CFS_Trueillness.doc

I don’t blame you for not knowing this, not many people would take the trouble to track down a chapter in a book published by the Royal College of Physicians. But there are one or two people who have done just that, just as they track every single thing that I have ever written on anything, trying to worm out of it anything that can be in the slightest discredible to me, and if they fail to find anything, they simply distort, misquote or on occasions simply invent it. It is far easier to spread the view that I agree with Elaine on CFS than actually report the fact I debated in public with her at the Royal College, that I disagreed with her, and that we both published our dissenting views afterwards. And yes, we are still friends.

It is after enduring twenty years of this that I decided to set up the website and put as much as possible of everything that I have published, not just in journals but in the media, on the website. Indeed, if any of you have access to anything at all that I have written and isn’t there (I am afraid I am not the best archivist) please send it to me, and I will add it as well. The only things missing are things that I can;t find anymore. Go on, take the trouble to read what I have actually written, and see then if I am the person that you think I am, or have the views that others have told you that I have. And also just think for a moment who is it that is misleading you, cos I am afraid it ain’t me.

Now, this time I am going to find the unsubscribe button. Apologies for that, but I really have to return to the day job. Incidentally, far from retreating into the lager and hiding away from dissent and alternative views, I have spent a long time doing the opposite, provided that it is expressed courteously, as it usually is. I have a feeling that might have been why I was awarded the prize earlier this week – but I don;t know, because in answer to an earlier post, no, I wasn’t on the committee!

All the best, and speaking personally, I am sorry to hear that you remain unwell, and hope things improve even after all these years. I can speak from clinical experience and say that it does sometimes happen, even if we don’t always know why.

SW

http://noodlemaz.wordpress.com/2012/11/07/john-maddox-prize-2012/
 
Messages
1,446
"Stockholm syndrome, or capture-bonding, is a psychological phenomenon in which hostages express empathy, sympathy and have positive feelings towards their captors, sometimes to the point of defending them. These feelings are generally considered irrational in light of the danger or risk endured by the victims, who essentially mistake a lack of abuse from their captors for an act of kindness.[1][2] The FBI's Hostage Barricade Database System shows that roughly 27% of victims show evidence of Stockholm syndrome.[3]"

http://en.wikipedia.org/wiki/Stockholm_syndrome
 
Status
Not open for further replies.