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Wessely Says: Even if XMRV Causes ME, "There's Nothing We're Going to Do About it"

Min

Guest
Messages
1,387
Location
UK
Mocking him is fun, but the reality is that here in the UK neurological myalgic encephalomyelitis has been deliberately muddled up with mild depression, and deliberately 'lost' in the muddle.

We can't obtain effective treatment, only psychobabble that does more harm than not, and the doctors we see have been brainwashed to believe that we are somatising.

I've been housebound and in intractable pain for 22 years whilst he and his colleagues spread this outrageous propaganda, and I can see no end to it and no beginning to effective biomedical treatment.

The UK could very well end up the only country in the world where there is officially no XMRV and where people testing positive for it are ridiculed.
 

oerganix

Senior Member
Messages
611
Vandemere -> Van der Meer
Rabojt -> Radboud Ziekenhuis (the last word means "hospital", and probably was there)
Nemakin -> Nijmegen

BMJ Podcast Part 2

DJ: We briefly mentioned XMRV there. In October of last year, the Lombardi team, based in the US, published a paper in the journal Science in which they suggested that a novel virus, this XMRV, could cause the syndrome. The papers garnered some controversy and one scientist whos looked at it in closer detail is Cathy Sudland. Cathys a senior clinical lecturer and honorary consultant neurologist at the University of Edinburgh. Shes actually written a response to this paper which is due to be published in Science soon. And, shes also written up her experience of that in the BMJ this week.

So Cathy, for a start, could you describe the Lombardi study for us?

Cathy Sudland: It was a study looking to see whether a particular newly discovered virus, called XMRV - which is a new retrovirus, which has been found in prostate cancer patients - they wanted to see if it was associated with Chronic Fatigue Syndrome. So, they did whats called a Case Control Study. Uhm, they had samples from patients with Chronic Fatigue Syndrome and samples from patients without Chronic Fatigue Syndrome, healthy controls, and they used a variety of viral detection methods to compare the cases with the controls and they found an excess of the virus, a very large excess of the virus, in the samples from the cases as compared to the controls.

DJ: Ok, so they thought that this might have something to do with CFS, then - a causative agent.

CS: Uhm, yes.

DJ: Now, for people who are listening who might not pay much attention to basic science journals, Science is a prestigious one, isnt it?

CS: Yes. I mean, its not a journal I read an enormous amount because its often has articles that have a lot of laboratory science and thats not something that I do a great deal of myself. And, it covers the whole spectrum of scientific discovery, really, from climate change to things that a relevant to everyday medicine. And, so, when there is an article that relevant to everyday clinical practice, and I hear about it, then I would take an interest but that doesnt happen very often.

DJ: But, you did take an interest in this particular paper and you looked a little further into the methodology of their study, didnt you?

CS: Because the paper seemed to be suggesting that there was a very big excess of the presence of the virus in samples from patients with Chronic Fatigue Syndrome - and, Im not an expert in Chronic Fatigue Syndrome - but I knew from my own clinical work as a neurologist and from talking to colleagues who know a great deal about the field, that thered been an interest in viruses as a potential causative factors, or triggers. And, I think youve heard from Simon Wessely, a causal link for some cases has never been identified. But theres never been suggestion that theres one virus thats predominant. And, theres always been, I think, a number of other factors contributing to the syndrome. So, I thought it would be interesting to find out a little bit more about what this paper was claiming, so I read it in quite a lot of detail.

DJ: And, what did you find?

CS: Well, Im an epidemiologist so Im very interested in the methods that people used to make comparisons between cases and controls and what I found, mainly, was a description of the laboratory methods but what I couldnt find in there was very much information about how the cases with disease, with this condition, had been selected - exactly where theyd come from. And, in particular, how the controls had been selected to make sure that they were an unbiased comparison group. And, to me, that seemed to be one of the most important potential uhm missing bits of information from this paper which might help us to assess whether the finding was accurate, reliable, repeatable and generalizable to other patients with this condition.

DJ: Since the paper was published, there have been a few more studies that have tried to replicate these results. What have they found?

CS: The original study in Science, its clear from the paper that the patients were recruited from the United States and they described that theyd been recruited from areas of outbreaks of Chronic Fatigue Syndrome. So, some case of chronic fatigue seem to occur in clusters, others seem to occur more sporadically and they may have different causes.

Uhm, but whatever, these patients came from the United States. And, subsequently thereve been three studies, that Im aware of, that have been published that have looked for the virus in patients with Chronic Fatigue Syndrome and theyve looked at samples from the UK in two cases and, in one case, samples from the Netherlands.

DJ: So, the paper just mentioned from the Netherlands was just published in the BMJ last week and so is available online, for free, from BMJ.com.

Im now joined, on the phone from Cathy in Holland [sic] by one of the researchers of that paper Jos Van der Meer is a professor of Internal Medicine at Radboud University in Nijmegen.

Hes been studying infectious diseases, and the host response to them, and particularly Chronic Fatigue Syndrome.

Jos, we heard from Cathy there that the patients in the Lombardi study were all from a cluster of Chronic Fatigue Syndrome that appeared in the states. How did you recruit the patients in your study?

Jos Vandemere: The patients we studied were all sporadic cases that came to our out-patient clinic. We wanted to be fast so we needed material which we had frozen away so we - and, we needed lymphocytes - so we had to go to a cohort we did, a cohort of patients, ahhh, which were very well defined and, actually, which we had used for other viral studies. And, in [this is unclear but is most likely:] methodological studies with matching controls.

DJ: You looked for the presence of this XMRV virus

JV: Yes.

DJ: And, can you take us through your results?

JV: Yeah, so, in none of the patients, and none of the controls, we got any signal that there was, really, the genomic material of this virus present. And, we really scrutinized that with high sensitivity and high specificity PCRs. And we used the same PCRs as the Lombardi group did...

DJ: Uhm...

JV: and we really challenged our own results: redid it and redid it, really to find and think, actually we put in... All our positive controls, we had the virus just by luck, by sheer luck, in our urology department because of the prostatic cancer connection. They were, they were... urologists were into the virus. So, we had the virus and we had this, kind of a, head start and we could do, beautifully, the positive controls. Which were all doing what they should do. Whereas the patients really was negative.

DJ: Ok, so does...

JV: Of course, were not alone in that. There are now at least two other cohorts that are found negative and I have heard rumours from the US that other people cant, ahh, also cant confirm the Lombardi data.

DJ: Ok, so does that... do you think youve really refuted the role of XMRV in Chronic Fatigue Syndrome?

JV: I think Im done, Im done with this. If the two British groups dont find the virus, we dont find it, and there is, according to the rumours at least, one American group with a good virology score [?] who couldnt find anything, I think this is the wrong track. And, probably there is some kind of contamination in the Lombardi lab.

DJ: OK...

JV: Or, it is peculiar for this [unclear: score?]. They looked at ... But for us, it is a closed book now. I would say I dont have too much urge to go deeper into this matter.

DJ: Ok, so if youre closing the book on this virus particularly, are you doing any other research thats looking into this?

JV: Were very much open to, say, other viralogical triggers. Right now were more on the track to say its not so important whether you get Epstein Barre virus, or a flu, or Q fever, or any other causative organism.

The interesting part, to my mind, at the neurobiology of this. Whats happening to the brain at that point in time? How is the neuro___ ____ [unclear] system, at a level of the brain, being deranged and why does that give rise to fatigue these people sense and how is this maintained. For me, those are the major questions right now.

DJ: So, XMRV doesnt appear to be the single cause of Chronic Fatigue Syndrome. But, even if it were, it wouldnt effect the outcome for the patient. The syndrome would still be treated pragmatically with the aim of mitigating its symptoms.

Ill leave you with a final word from Simon Wessely about the future of the research into this disease.

SW: And, Im... but I do think about this particular episode, you know, the XMRV story. I dont want people to go around thinking that science isnt making progress in this area, cause it is. Im not so involved now as I used to be but Im still watching out whats going on. And, we know so much more than we did twenty years ago as a result of careful, painstaking research by a large number of people.

I dont think were going to get that sudden eureka Archimedes moment before which everything was dark, after which everything is light. I think it will be a gradual, steady series of small steps forward.

And, I really do hope that, you know, doctors and medical scientists in all sorts of disciplines get more involved in this area because we certainly need it - its an under-researched area - particularly to bring in people from right across the board of medicine, and to get involved in this area. And, uhm, because I can just tell you that its... youd be surprised to learn that its actually very enjoyable and very rewarding. And, we want people to engage in this area and help move it forward in a steady fashion.

Berta: And thats all for this week...

As Dr Yes said, this is from the Minister of Propaganda. Notice how they are still repeating what they have to know is a lie: that the WPI cohort is poorly described and that it is from one outbreak from one area of the US. They know very well that isn't true, but everytime they get a chance they promote that idea. (It MAY be there, but it isn't HERE.)

Distraction number two: they once again bring up the charge that the WPI lab might have been contaminated, a charge that has been laid to rest numerous times by better minds than theirs.

Then SW tries to act like he really cares about the science involved and does his caring scientist imitation, all the while saying just be patient for a few more decades. We are looking for the cause by it's SOOOOOO complicated and it takes SOOOOO long to find the REAL answers. Sorry, XMRV wasn't IT, but we really want to find IT. Pure propaganda, smoke, mud in the water. His motto should be: If we can't razzle 'em with dissembling, we'll dazzle 'em with BS.

Thank you Koan for transcribing this. It must have felt like trying to swim through a sewer.
 

fingers2022

Senior Member
Messages
427
Mocking him is fun, but the reality is that here in the UK neurological myalgic encephalomyelitis has been deliberately muddled up with mild depression, and deliberately 'lost' in the muddle.

We can't obtain effective treatment, only psychobabble that does more harm than not, and the doctors we see have been brainwashed to believe that we are somatising.

I've been housebound and in intractable pain for 22 years whilst he and his colleagues spread this outrageous propaganda, and I can see no end to it and no beginning to effective biomedical treatment.

The UK could very well end up the only country in the world where there is officially no XMRV and where people testing positive for it are ridiculed.

Min, I'm really sorry if my post came across as trivialising and "fun". I can assure you that it is not. I want to discover the truth. If this turms out to be that I suffer from delusions of viral infection, I'm ready for that. I'm only a human being in a vast universe.

I want some clear thinking. I want open minds. I want compassion and empathy. I WANT THE TRUTH WHATEVER IT MAY BE. Maybe SW is simply the counterbalance to the virologists, and vice versa. We're all part of the puzzle, and we all have the power to help solve it.

Your vision of ME in the UK will not happen, trust me.

Very best wishes
F
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
Simon says: And, I really do hope that, you know, doctors and medical scientists in all sorts of disciplines get more involved in this area because we certainly need it - its an under-researched area - particularly to bring in people from right across the board of medicine, and to get involved in this area. And, uhm, because I can just tell you that its... youd be surprised to learn that its actually very enjoyable and very rewarding. And, we want people to engage in this area and help move it forward in a steady fashion.

It certainly hasn't been very enjoyable or very rewarding for those of us living with this disease.
 

fingers2022

Senior Member
Messages
427
I think he's quite bright. Just misguided. I actually think the parts you bolded are fine, but I think he might be using 'fatigue' in a wider sense than you expect. I naturally use quite a wide definition too, so don't find it confusing, but I know others do.

He comes across as a bit silly whenever he starts talking about cartesian dualism etc in relation to CFS though - I don't know if that's because he never really explains himself properly so I just misunderstand him, if he really is confused, or if he is just trying to mischaracterise his opponents rather than actually communicate an idea. Very often he just seems to waft these terms arround to imply there's something necessarily naive about those critical of his work, but he's never able to make clear exactly what - other than in the case of absurd straw-men. Has anyone ever seen him write at length on these matters?

Esther

If he's using fatigue in a wider sense, he needs to make that clear. Communication is everything in this condition, and miscommunication is a big part of the problem.

After 30, 40, 50.....years we still don't have clear definitions, terms, even a globally accepted name for the condition.

Definition of the problem is where we need to start, then we can start to understand it and then solve it.

Best wishes (I don't mean that, that's what people who think they're important say to people who they think they're superior to) I mean.....

Lots of love
F
 

Dr. Yes

Shame on You
Messages
868
Notice how they are still repeating what they have to know is a lie: that the WPI cohort is poorly described and that it is from one outbreak from one area of the US. They know very well that isn't true, but everytime they get a chance they promote that idea. (It MAY be there, but it isn't HERE.)

Distraction number two: they once again bring up the charge that the WPI lab might have been contaminated, a charge that has been laid to rest numerous times by better minds than theirs.

Exactly, Oerganix. They are employing tactics which should be recognizable by anyone familiar with social engineering or socio-political framing, or just political propaganda in general. First, skew the 'frame of reference' through which the audience will view the debate to one that favors your agenda. This is achieved by deliberately re-framing the discussion in simplistic terms and constantly (and prominently) repeating it this way in the media, as Wessely and his collaborators have done. In so doing, make sure to ignore the issues critical to the opposing view, and also create distraction or 'run interference', to edge those issues out of the audience's consciousness. Do this by sponsoring attacks on one or two points about the opposing argument, even if they aren't clearly weaknesses at all, as if they were glaring weaknesses. Having created a mental state of confusion, replace those other issues with your own ideas, the more apparently reassuring the better, as the uncertain mind instinctively grasps at these more readily than new ideas that have been suddenly (deliberately) thrown into doubt. If the opposition uses academic language, respond with folksy or easily digestable metaphors.

[SW]- And, I really do hope that, you know, doctors and medical scientists in all sorts of disciplines get more involved in this area because we certainly need it - it’s an under-researched area..
This when Wessely and his colleagues have done everything to discourage biomedical research into physical causation of ME/CFS. Yet another common strategy: if your opponent can point out that you are preventing progress and public good, appropriate their message and re-frame the situation as if they are in fact part of the problem and you are the one promoting progress.

And, of course, at all times keep relentlessly repeating the 'big lie', or lots of little ones, even if at first it was discredited or laughed at, because over time the lie sticks in the public consciousness and the original clarity and context are lost. This requires not scholarly articles, but the lion's share of media coverage (easily bought, if you have the resources or political influence).

An obvious contemporary example of this kind of manipulation occurred during the build-up to the Iraq War and has continued to varying extents since. Dick Cheney and others repeated the lie about ties between Iraq and Al Qaeda even after this had been publicly discredited, and the technique proved surprisingly effective despite the disastrous results... a very high percentage of Americans, often a majority, continued to believe that there was a direct link even leading into the last election.

Every politician and/or professional spin doctor worth his salt has these strategies as part of his basic arsenal. Wessely et. al. are no exception.


Thank you Koan for transcribing this. It must have felt like trying to swim through a sewer.
:D Yes, she must feel like giving her brain a shower!
 
R

Robin

Guest
Esther

If he's using fatigue in a wider sense, he needs to make that clear. Communication is everything in this condition, and miscommunication is a big part of the problem.

After 30, 40, 50.....years we still don't have clear definitions, terms, even a globally accepted name for the condition.

He did make that clear:

SW: Well, it all comes down to definition. If you use a broad definition which includes, for example, also people who have co-morbid, you know, concurrent depression, anxiety, it’s probably commoner than that - maybe up to 1 to 2% of the population. If you go for a narrow definition, it comes down to about 0.2/0.3%. It’s a bit like blood pressure; it all depends on where you draw the line.

We know he favors a broad (Oxford) definition for research. We also know that CFS is not a spectrum like blood pressure: you either have PEM, flulike symptoms, cognitive dysfunction, POTS, or you do not. By widening the goal posts to include the chronically tired, run down, depressed, etc he can mix clinically different patients and influence his results. It's like sneaky peeking when you play pin the tail on the donkey -- you know what's going to happen!
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
Wessely purposely blurs the boundary and then criticizes the Science study for this very thing.

But, what I think was unusual here was, in given the heterogenaity of Chronic Fatigue Syndrome, and its somewhat blurred boundaries, the claim that theyd actually found THE cause in the vast majority of people they studied, was always rather implausible.

In fact, the Science study was based on the Fukuda and Canadian criteria including specified markers.
 
Messages
13,774
Communication is everything in this condition, and miscommunication is a big part of the problem.

I think Wessely often writes in a way that's primarily designed to create an impression. It helps him seem reasonable and persuasive to a general audience but adds to the irritation many patients feel for him. It also means that patients tend to criticise their own interpretations of his words, which will seem unfair to those who interpret him differently.

From what I've read of his recent work, he really seems to avoid making any terribly clear assertions about CFS these days. Yet our interpretations of it will often be driven by his earlier, clearly unreasonable work, our interpretations will often seem especially unreasonable to those unfamiliar with it.

(Sorry this post is a bit confused. I'm rushing to watch some TV!) Take care.
 

MEKoan

Senior Member
Messages
2,630
I think Wessely often writes in a way that's primarily designed to create an impression. It helps him seem reasonable and persuasive to a general audience but adds to the irritation many patients feel for him. It also means that patients tend to criticise their own interpretations of his words, which will seem unfair to those who interpret him differently.

edit

Yet our interpretations of it will often be driven by his earlier, clearly unreasonable work, our interpretations will often seem especially unreasonable to those unfamiliar with it.

Yes, exactly, and he does this in a very calculated fashion.

From what I've read of his recent work, he really seems to avoid making any terribly clear assertions about CFS these days.

Yeah, and that makes me think that he knows XMRV will pan out. His change in demeanour is one of the single most encouraging signs, for me, that XMRV has legs!

:victory:
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
I think Wessely often writes in a way that's primarily designed to create an impression. It helps him seem reasonable and persuasive to a general audience but adds to the irritation many patients feel for him. It also means that patients tend to criticise their own interpretations of his words, which will seem unfair to those who interpret him differently.

From what I've read of his recent work, he really seems to avoid making any terribly clear assertions about CFS these days. Yet our interpretations of it will often be driven by his earlier, clearly unreasonable work, our interpretations will often seem especially unreasonable to those unfamiliar with it.

(Sorry this post is a bit confused. I'm rushing to watch some TV!) Take care.

I agree on all this. His paper on the XMRV study did have some big advances in nomenclature and definiton for him: they called "CFS" a "disease", used Fukuda Criteria and in their selection process ruled out patients with somatization.
 

bel canto

Senior Member
Messages
246
I'm so glad that doctors and researchers didn't apply "Wessley-think" to diseases like MS - or at least that we are now past that stage. Science may not have all the answers yet, but research for this and similar diseases have at least yielded interventions into the disease process.

It's incredible to hear a person say that treating the symptoms of a disorder is sufficient - no understanding of the cause is needed. That clearly supports what some of you believe - that he either believes there is no physiological basis to ME/CFS, which means he is incompetent, or he is a very bad person, in cahoots with others for monetary or other reasons.

As most politicians are not only non-scientists, but likely not very interested in science, a psychiatrist can be very persuasive. And he is quite slippery in his use of language, as you point out.

However, even without clear assertions about CFS, as Esther noted above, 1 + 1 still equals 2, ie - his message is still quite clear - you don't need to look for an ongoing biological cause of this disease because it does not exist.
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
However, even without clear assertions about CFS, as Esther noted above, 1 + 1 still equals 2, ie - his message is still quite clear - you don't need to look for an ongoing biological cause of this disease because it does not exist.
I think that's exactly right.

Welcome, bel canto. From what I can tell, your screen name is Italian for "fine song." Nice to have another musical reference on the forums.

gracenote
 

parvofighter

Senior Member
Messages
440
Location
Canada
Thank you koan!!

Koan, I want you to know how much I appreciate your swimming through the proverbial sewer. This was an extremely important transcription, because it captures Wesseley et al in a potentially unscripted, and vulnerable mode: the wonderful podcast.

Great ammunition for investigative reporters and class-action lawsuits on ME/CFS!
I'm just back from my monthly hospital IV trip, so am just not up (YET!) to commenting further right now. But bottom line, we NEED to keep transcribing/copying/saving this kind of dreck, if only to save it for posterity, and pass it on piecemeal to investigative reporters and/or lawyers. This podcast/transcription is going to come back to bite the CBT/GET lobby, and the BMJ.

I felt dirty reading the transcription, and can only imagine how you felt, Koan, listening to this over and over to transcribe it. You can take your mucking gloves off now!

Mucking gloves..jpg

Thank you Gerwyn, gracenote, Maarten, flybro, natasa, Dr Yes, Kim, justinr, monkeybusiness, fds66, Min, oerganix, bel canto... for your insightful comments. CBT/GET-o-philes are far more than a disingenuous irritation... they have devastated lives by their paint-by-numbers approach to this neuro-immune disease, and their stranglehold on ME/CFS health policy.

The cherry in the sundae is Wesseley's statement:
[FONT=&quot]You know, youve been hit by a car; we dont need to know the number plate of the car that hit you in order to rehabilitate someone whos been in a road traffic accident. Nor, when were dealing with CFS do we need to know precisely what virus it was that you had and when. [/FONT]
If ever there were words that screamed of medical ignorance, injustice - much less malpractice - this is it. Wesseley's words here are beyond those of an intellectual simpleton - he and the CBT/GET movement are mortally dangerous to patients with Canadian-criteria ME/CFS. Just look at the differential presentation of viral heart disease, which is known to accompany ME/CFS ... it makes a MASSIVE difference which virus you have - both to your outcomes, and to your treatment... that is if you're one of the lucky ones like me who is having viral heart disease treated. (just do a search on "viral myocarditis" on PubMed). People are dying from this. Just look at the outcomes of Montoya's Stanford work on Valganciclovir. It makes a huge difference, not only which virus you have, but also what the titre is.

Hang in there... quotes like those from this podcast are going to ROCK the global media when they finally come to their senses and realize that another Acquired Immunodeficiency Syndrome is being treated with preening lollipops, condescending pats on the head and veiled admonishments to have a better attitude.
And that the BMJ is lapping it up - and broadcasting this dreck.

Perhaps the last words in Part 2 of the transcription are the most chilling, because it beautifully captures the effect of decades of denying ME/CFS patients biological diagnostics and treatment...

"we want people to engage in this area and help move it forward in a steady fashion."

It is no surprise that Wesseley ends with a note to preserve the status quo. Steady now... steady... Perish the thought that a stunning breakthrough might occur that would expose the one-size-fits all CBT/GET approach to ME/CFS as methodologically and scientifically flimsy, much less morally repugnant and dangerous.

And Monkeybusiness, I had no idea the BMJ was state-funded. That goes a long way to illuminating the BMJ's participation in this farce.

Thanks again Koan, you're a trooper!:Retro smile:
[FONT=&quot]

[/FONT]
 

MEKoan

Senior Member
Messages
2,630
I must say, it has been really gratifying to watch people actually use the transcript! It made me feel so good and even, kinda, useful :victory:

Thank you!

:hug:

But yeah, you really don't want that guy in your head too much! I feel like I developed a bad case of slime on the brain. Should be all better by tomorrow.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
As an example to people new to UK ME politics here is how one earlier NHS doctor who claimed to have the answer to the disease was tackled

(and yes, we did try to get that reporter interested in the ME side)

http://duncan.gn.apc.org/nixon1.htm

Exerpt
====
Doctor loses C4 libel case

Channel 4 has won a 2m libel battle with a Harley Street doctor who the channel claimed rigged tests and misdiagnosed a terminally ill Aids patient. Dr Peter Nixon halted his case against the channel's 1994 programmc, Preying On Hope, after five weeks at the Royal Courts of Justice in London. Dr Nixon has gained a high profile for his theory that a list of diseases including Aids, Gulf War Syndrome, ME and premenstrual tension are attributable to hyperventilation.

However Channel 4 found that Dr Nixon rigged his patients' breathing tests by asking them to "breathe as if they were angry". He told lan Hughes, an Aids patient who died last summer, that his fatigue was caused by over breathing. Dr Nixon who had a turnover of more than 100,000 a year, recommends a course of Valium or diazepam and "two weeks of sleeping" as a cure for hyperventilation. Paul McCann

Independent (UK), 16 May 1997, page 2
 
G

Gerwyn

Guest
I did not know it was a state propaganda machine either Do we have anyone capable of finding out who the members of the board are-both executive and non executive directors.It might explain a lot!