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

[justinreilly]

An Unbelievable Podcast by Wessely on BMJ Website:

http://podcasts.bmj.com/bmj/2010/03/05/chronic-fatigue-syndrome/

Wessely wants everyone at home to know that EVEN IF XMRV WERE FOUND TO BE THE CAUSE, MEDICAL THERAPIES WOULD BE INAPPROPRIATE!!

He then says "We're not going to go doing more and more tests to find out what was the virus because, frankly, even if we found it there's nothing we're going to do about it. We're in the business of rehabilitation."
(at 10 minutes 20 seconds)

And then the interviewer repeats this uncritically in summary at the end!

I you are pressed for time start the podcast around 9minutes, 30 seconds.

Wessley is smart. He sure knows how to pull a scam with carefully crafted and continuous PR. His job title should be UNUM propoganda minister because that literally is his full time job. As we all know, it certainly isn't science.

Someone has written a very nice response below it. Highlights:

The issue is this- take two distinct illnesses, anorexia nervosa and cancer, both of which are characterized by weight loss. Then create a waffling name such as ‘Chronic Weightloss Syndrome’, or ‘CWS’, and allow individuals such as Prof. Wessely and his colleagues to pollute the ‘CWS’ research literature with studies characterized by all manner of vague inclusion criteria and questionable methodologies which end up showing whatever it is the authors designed them to show. Then trumpet these false studies in uncritical and biased medical journals such as the BMJ instead of rigourous and well done studies on well defined patient groups.
-John

My comment to the podcast:

Post by justinreilly:
BMJ: Helping Doctors Make Worse Decisions
John hits the core issue right on the head. The "Wessely School" came up with and use the patently flawed "Oxford 1991" definition of "CFS", which is merely idiopathic chronic fatigue, i.e. nothing more than chronic tiredness not caused by a known disease.1 This is a transparent attempt to create confusion and doubt by lumping all unknown causes of fatigue into "CFS" rather than defining ME/CFIDS as the unique neuro-endocrine immune disease it is. BMJ continues to publish studies based on the spurious Oxford definition despite receiving critiques every time they publish these invalid studies. This Oxford definition is used by the Wessely School, including the Dutch researchers in this issue of BMJ, to produce meaningless results so they can say 'let's just treat them with CBT and GET (graded exercise)."

A hallmark of ME/CFIDS is Post-Exertional Morbidity- the worsening of the disease upon minimal exertion. The Wessely School CBT/GET treatment is: telling patients they do not have an organic disease, that exercise has been proven to only help, not harm them and then making patients exercise. This results in a tremendous amount of iatrogenic physical morbidity.2 Unlike the Oxford definition, the Canadian Government ME/CFS Definition created by consensus of many of the world's top ME/CFIDS clinicians and researchers, deliniates and explains the (considerable known) pathophysiolgy of this discrete disease.3

Wessely says, in the accompanying podcast, that even were XMRV found to be the cause of ME, the exclusive treatment would remain CBT/GET. Well, is the treatment for AIDS still to tell patients they don't have illness other than symptoms caused by the stress of being gay and they just need to exercise? History has shown that finding a retroviral cause and treating with anti-retrovirals significantly reduces patients' illness burden even more than Wessely's therapy of telling a patient he is not really sick.

For the story of the Wessely School's war on science and ME patients, please see Prof. Malcolm Hooper's recently published "Magical Medicine" free, infra.4

1. Sharpe MC, Archard LC, Banatvala JE, et al. (February 1991). "A report--chronic fatigue syndrome: guidelines for research". J R Soc Med 84 (2): 118–21. PMID 1999813.

2. Neuro Endocrinology Letters, Sep 15, 2009;30(3):284-299. PMID: 19855350, by Twisk FN, Maes M. ME-de-patienten Foundation, Limmen, The Netherlands; Clinical Research Center for Mental Health (CRC-MH), Antwerp, Belgium.

3. www.mefmaction.net/documents/me_overview.pdf

4. http://www.meactionuk.org.uk/magical-medicine.htm

 

[Kati]

Justing, great response, it is very respectful and very clear and firm, like attorneys do so well. I also appreciate you providing credible biological research paper links with it.

 

[justinreilly]

wow. if someone accidentally gave wessley the disease i think it would be interesting to see how he deals with it lol

he doesn't even make sense. the virus doesn't matter? wtf

Yes, wtf! Thank you! I'm not the only one.

 

[Gerwyn]

An Unbelievable Podcast by Wessely on BMJ Website:

http://podcasts.bmj.com/bmj/2010/03/05/chronic-fatigue-syndrome/

Wessely wants everyone at home to know that EVEN IF XMRV WERE FOUND TO BE THE CAUSE, MEDICAL THERAPIES WOULD BE INAPPROPRIATE!!

He then says "We're not going to go doing more and more tests to find out what was the virus because, frankly, even if we found it there's nothing we're going to do about it. We're in the business of rehabilitation."
(at 10 minutes 20 seconds)

And then the interviewer repeats this uncritically in summary at the end!

I you are pressed for time start the podcast around 9minutes, 30 seconds.

Wessley is smart. He sure knows how to pull a scam with carefully crafted and continuous PR. His job title should be UNUM propoganda minister because that literally is his full time job. As we all know, it certainly isn't science.

Someone has written a very nice response below it. Highlights:



My comment to the podcast:

My response follows

I note Dr Wesselly,s subtle change in position from XMRV is not the cause of ME/CFS to IF it is found to be the cause.

According to Dr Wesselly,s logic then GET and CBT will be the treatment of choice for all people suffering from viral infections.I,m sure that AIDS patients would appreciate this.

Perhaps this viewpoint is what comes when a psychiatrist becomes involved in virology.A field he knows next to nothing about.

He also appears to have trouble in interpreting "trial" results GET and CBT have never produced any positive objectively measured improvements

I doubt that Dr Wesselly would except patient self reporting as sole and adequate evidence for the efficacy
of a drug.perhaps he would care to comment on that.He ,however,appears to embrace such data regarding CBT and GET with enthusiam bordering on the messianic.

One has to question whether a person with his preconceptions
re psychological causation has any useful part to play in biomedical research

 

[Elliot]

He really is quite the insufferable fellow isn't he?

 

[Djembe]

I Live in another country so don't have to be diplomatic and nice so WTF is wrong with this Wessely guy. He needs to take his medication on a regular basis because he has some real issues. His suggestion would be like saying that why treat HIV with retro-virals ? It doen't make any difference if there symptoms are caused by a retro-virus just send them for CBT and it will solve the problem. It reminds me of our Previous Health Minister in South Africa who claimed that HIV didnt cause Aids and refused medication to HIV + patients for 6 years, resulting in many deaths. What is more our current President who after having unprotected sex with an HIV positive woman took a shower so that he wouldn't get HIV. Wow Wessely should imigrate over here he would fit in perfectly.

 

[flex]

Who is the "we" he is referring to in we are not going to do any further tests. Is he the spokesperson for the whole of virology, neurology, infectious disease, the MRC, NICE and the UK Government? Its an astonishing statement. Last I checked he was just a jumped up psyche with a bunch of crackpot theories. Is he qualified to speak on behalf of the best biomedical scientists in the world.

So even if there is a retrovirus present he already knows that "recovery" can be induced by his rehabilitation. Funny that, after years of saying it was not a physical disease the treatment is the same regardless. Are we going to withdraw drug treatments form cancer and aids patients and send them to a Wessely rehab clinic? Perhaps we could bring back the dead with CBT if it doesn't matter what the cause of death is.

Just imagine if previous generations had taken the attitude "there is nothing we could do about it". There would be no penicillin no antibiotics no cancer drugs - on and on. Try telling that to a mother whose child has battled leukemia and lived because of dedicated medical scientists.


Seems like he has completely lost the plot. It shows utter denial and an over belief in the power he has over the sufferers of this disease.

 

[ukxmrv]

We have parliamentary meetings called "APPG"s in the UK. At one meeting on ME and CFS, Dr Trudi Chalder (a Wessleylite) said that CBT would be able to cure the gene expression differences seen in the Kerr research.

So, that has always been their response. We knew that when XMRV was announced it would be business as usual for these guys.

We have a 2 tier system in the UK. Some people can afford testing and treatment from private docs and the rest are stuck with the likes of Wessely, Chalder. (Occasional reasonable CFS doc but very rare). The alternative is nothing.

There is nothing unexpected in that podcast. They have got away with this for decades and they will just continue. At the end is a nice fat UK NHS pension and they are not getting any younger.

 

[JAS]

What is so frightening is that a psychiatrist is telling our GPs here how to treat people with a biomedical disease...this has to be unethical!!!

 

[Robin]

he doesn't even make sense. the virus doesn't matter? wtf

It does, in his weird Alice in Wonderland mind.

He thinks he has a lot of evidence via his crappy peer reviewed studies that "rehabilitation" works. (Sounds like something that would be forced on a poor dissident in old Communist China.) A lot of modalities in medicine are effective even though there is no firm understanding of cause. So, no matter what the cause he believes that ME/CFS is 1) treatable and that 2) the clinics can treat it. If XMRV does turn out to be the cause of ME/CFS, he'll probably say that CBT/GET a good intervention and produce more positive studies. Though it will be more of a challenge because his patient selection will be limited to people who are actually sick.

For someone who claims to have resigned from ME/CFS work, he really likes to involve himself in studies and podcasts and media!

 

[Dr. Yes]

from Gerwyn:

One has to question whether a person with his preconceptions
re psychological causation has any useful part to play in biomedical research

Let alone be allowed to drive. I mean that figuratively, of course. :Retro wink:

from ukxmrv:

At one meeting on ME and CFS, Dr Trudi Chalder (a Wessleylite) said that CBT would be able to cure the gene expression differences seen in the Kerr research.

Sort of a 'Lightning Process' for gene expression, eh?

What are the Wessely heads doing wasting their creative talents on research papers?? They could all make it on the Science Fiction best-seller's list.

 

[omerbasket]

The more I know about this guy the more I hate him, but this time I have to say something that might defend him. As he's quoted here, he said: "even if we found it there's nothing we're going to do about it. We're in the business of rehabilitation.".
To me, and it ma be due to the fact that my primer language is hebrew and not english, but to me it's sounds as if he says "We're not going to do more tests because even if the virus is the cause, we are not in virology business, but in psychiatry business, so if a virus is the cause, than a virologist would have to deal with it".
What do you think? I may be entirely wrong here, it just how it sounds to me.

 

[Adam]

This is how I read it Omerbasket. The guy is a master with words. He's sayiing, look, we don't work with people with organic illnesses. We exclude those people from our clinic. Or they never get to us in the first place.

The reality is IMHO, if XMRV is proven to be the baddie in CFS/ME then the CFS/ME clinics won't be dealing with XMRV patients. Infectious diseases depts. will pick them up because we will be relabelled XAND or whatever and of interest to doctors working with infectious diseases and able to test and proscribe and diagnose.

My own hospital doc has always said there is a subset of patients we are seeing that are clearly suffering from a viral condition, but one that we know nothing about. Sorry. Maybe one day we will know.

I see him in a couple of weeks. Wonder what he will have to say about XMRV? I will post here and let you know. I think his opinion will be of interest to UK patients as I understand he has some reknown in the field of infectious diseases.

Maybe the one day he spoke of is not too far off...?

 

[starryeyes]

Wessely is acting like a man who's been backed into a corner.

 

[ukxmrv]

I read it that he will continue to sell his form of "rehabilitation" for people with the virus. After all what has changed for him?

Fits in with the DWP agenda. Getting people off benefits and back to work. Even if they have a serious, neurological disease (as in now) SW and friends sell CBT and GET as a way of getting people back to work or at least denied benefits if they can.

If you see my comment above about Trudie Calder. She said that it doesn't matter about Kerr's gene expression as they can fix that with CBT.

SW means don't worry about a retrovirus as we can get these people better (or at least functioning) with CBT and GET (i.e. like we do now). Business as usual.

I can't see how that XMRV changes anything for him.

It won't happen until people in the UK have a choice. If XMRV continues to be denied as existing here and people denied treatment, then we are still stuck in the same trap. Pay to go private, pay for your own treatment or see a Wesselyite.

Being XMRV+ has made no difference to my NHS tx.

 

[Carrigon]

You can't rehabilitate a virus. You can't reason with a virus. You can't tell a virus that it doesn't exist. Perhaps Wessely should inject himself with XMRV and see if he can talk the virus down. That might make for a very good experiment.

 

[V99]

Carrigon.

Maybe Wessely virus can then be used as a vaccine, where all the tiny XMRV bugs can give CBT and GET to the other bugs. Only problem will the 60% or so who do not respond.

 

[Esther12]

Unless I've misremembered - this ties very much with the theory I was proposing for Wesseley's motivations and understanding of CFS. I don't want to show off too much (not least because I could be wrong) - but I think he's being reasonably honest about the immoral quackery of his position. I think that he really believes that this is the best approach for pragmatic reasons.

It's rather sickening to hear him talk about people viewing CFS in a simplistic manner given his early papers on the subject, and the harm they did. Talking about 'patients feel they're being stigmatised', again shows a disinterest in the reality faced by patients. It wouldn't matter if we just felt that we were being stigmatised, but when you go to doctors' websites and find them wishing CFS patients knew what it was like to suffer from a real disability, or joking about how they'd like to euthanase us; and we see how these attitudes affect so many different aspects of our lives, it's slightly revolting to have the man whose work has done so much to engender these attitudes talk about us just 'feeling as if they're being stigmatised'. ("Oh it's still very real this feeling. Just because it's only happening in their minds doesn't mean we shouldn't be concerned about it: that would be to engage in a naive dualism that underplays the compicated realitionship between body and mind, yadda-yadda.)

 

[MEKoan]

He is a fascinating case. I can't tell if he is aware and consciously manipulating the evolving situation or totally deluded and defending his ego (as in "ego defense mechanism") in the evolving situation. Whichever, I remain convinced that he is a man with more psychological and ethical problems than most of us will ever know. History does not treat people like this kindly. Cold comfort.

 

[Gerwyn]

I read it that he will continue to sell his form of "rehabilitation" for people with the virus. After all what has changed for him?

Fits in with the DWP agenda. Getting people off benefits and back to work. Even if they have a serious, neurological disease (as in now) SW and friends sell CBT and GET as a way of getting people back to work or at least denied benefits if they can.

If you see my comment above about Trudie Calder. She said that it doesn't matter about Kerr's gene expression as they can fix that with CBT.

SW means don't worry about a retrovirus as we can get these people better (or at least functioning) with CBT and GET (i.e. like we do now). Business as usual.

I can't see how that XMRV changes anything for him.

It won't happen until people in the UK have a choice. If XMRV continues to be denied as existing here and people denied treatment, then we are still stuck in the same trap. Pay to go private, pay for your own treatment or see a Wesselyite.

Being XMRV+ has made no difference to my NHS tx.

what does a mental health nurse know about virology Perhaps she is confusing genes with jeans! They are clearly in the BUSINESS of rehabilitation.Perhaps CBT means Counselling Band T cells and GETing them to question their beliefs that there is a virus about