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Horrifying article in Sunday Times

Messages
10,157
I have come across a number of people saying that CBT has been helpful for them, including one or two who have attended Barts (or where-ever it is that the Wessely school practise), and found their approach to treatment to be credible and useful.

Do you have links Bob. I am just interested in what 'helpful' means.

CBT can be used as an helpful adjunct to many illnesses but when it is used as the sole treatment for a physical illness, then that's a problem. CBT is not a cure for anything. Looking at the King's College clinic staffing list, I see psychiatrists, CBT providers, physiotherapists. They provide CBT and GET as the main therapies and I would assume the physiotherapists are there to fix you after you lose all your false illness beliefs. How is the treatment credible when it has been debunked over and over again. The way that Wessely et al present CBT as the answer, one would think there would be thousands of positive results all over the internet, not just a smattering here and there. I have no problem with CBT being used as an adjunct therapy but not touted and offered as the only therapy for ME. Bah Humbug. The state of affairs is unacceptable -- in the press, within the NHS.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
"First they ignore you, then they ridicule you, then they fight you, then you win." -- Mahatma Gandhi

This article stinks of desperation, which is a good sign that we are actually winning.

"You ain't done nothing if you ain't been called a Red" -- old labor song

I've certainly been called a Red, and a lot worse. Hanlon's insults mean nothing to me. I laugh at their lists. If I'm not on one, then somebody has screwed up. If I am on their lists, then so is everyone else on this forum: you're all guilty by association.

I've been a troublemaker, off and on, since high school. I regret very much that I am too sick to make much trouble any more.
 
Messages
13,774
I thought I'd cross-post my old blog on Wessely's 'Personal Statement'. I think it's a couple of years old now, but it's still really relevant to Hanlon's article: http://forums.phoenixrising.me/index.php?entries/simon-wesselys-personal-story-annotated.1054/

The formatting of it went wrong when the forum software changed. I've just had a little go at sorting things out, but there might still be some glitches in there (darn it - just checked back and for some reason lots of my quotes are split in two... they shouldn't be, so just ignore that!).
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Is there as link where one can comment publicly? I want to add the proposed tests (Citokine porfile, Lymphocites subpannels, Viral reactivations, tilt table test....) and proposed end points (NK cell number and activity, Inmune abnormalies,...) (if not proposed biomarkers).

The actual article is behind a paywall:
http://www.thesundaytimes.co.uk/sto/Magazine/Features/article1252529.ece

If you want to give Mr Murdoch your money, you can subscribe for £2 a week, for a minimum of one month, here:
https://subscription.thetimes.co.uk/webjourney/webj_subscription?pc=digi_all_packs&ppc=Acquisition6
 

sianrecovery

Senior Member
Messages
828
Location
Manchester UK
Well, its worth as many of us as have the energy writing letters of complaint, and referencing some of the hard science emerging. Presumably The Weasel and this journalist are Groucho club buddies or something. The whole thing reminded me of Brass Eye - for anyone outside of the UK that was a satire on the media - when whatshisface started talking about only being able to find a drunk, child-molester, cat-killing ME patient to talk to, I actually began to laugh. What utterly ridiculous people. How sad they have power over anyone.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
when whatshisface started talking about only being able to find a drunk, child-molester, cat-killing ME patient to talk to, I actually began to laugh.

Must admit I put off reading the whole article on Sunday (bought a paper specially then couldn't bear to open it) but like you, when I read that bit I thought he'd jumped the shark. The whole thing seemed so transparently hysterical.
 

Seven7

Seven
Messages
3,444
Location
USA
The way to fight back is evidence and make the writer look like an idiot so they think twice about publishing unbased articles. If you refute the main argument and ask the wiriter to please revise the document, or maybe enough letters of us poitning out the wrongnes to editor then we can start disarming this peple. We dont need to be hateful or anything but to please correct the "there are not test" to there are "known test to show abnormalies"....... We just demand acurracy is that too much to ask??!?!?!? Anybody suscribed and have the email of the editor / publisher not sure the right term????
 
Messages
13,774
I don't know how worthwhile it is writing in about. There is a danger that they will quote/edit your letter in a way which makes it seem as if it justifies their story. Who knows? It could be worth pointing out some of the problems with it.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
This is a shock jock / trolling type of article. Highly biased with a clear agenda. After thinking about this and reading a wide range of comments on various sites, I wouldn't bother replying ... complaints are air to a shock jock. Editors love it. If you want to issue a complaint, then make it public and somewhere else. While its largely a toothless tiger, maybe formal complaints to the press council or whatever its called (brain not working, doh).

On thinking about Simon's (W.) patients, I am reminded of my comments on quackery. Take a hundred patients. Treat them all. Ten do better. One becomes a convert and joins the cause. Claim a cure or treatment.

Hypothetically speaking, many who Simon W. sees will not have ME but some other disorder. Some will get better on their own, some need a push. Simon convinces these to try harder, to change their attitude, and miracle of miracles, the non-ME patient improves a little. See, proof! Not so. This is anecdotal evidence of the same kind as promoted by quacks. Its sad to see this from a member of the medical profession. This is why we require clinical trials. This is why we require objective evidence in trials, not potentially highly biased subjective evidence.

The PACE trial demonstrates in a limited way what every other trial with objective evidence shows: to the limited extent that PACE trial was objective, there was no substantive improvement in functional capacity. There was an improvement in a minority in their attitude toward their issues. It seems they conflate attitude with capacity.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
A brief reminder about the results of the the PACE Trial.

When assessed with the only objective measure of disability, the six minute walking distance test, there was zero average improvement in patients after treatment with CBT, when compared with standard medical care. (So there was absolutely no improvement in objectively measured disability at all, after treatment with CBT.)

Patients were left with 'severe disability', after treatment with CBT & GET, when measured objectively with the six minute walking distance test.
This was confirmed by Dr Christopher Snell at the FDA conference. He said that the final results for the six minute walking distance test indicated 'severe disability' (He cited Weber/NYHA).

There was no significant improvement in average hours worked, and no significant reduction in welfare benefit claims, after treatment with CBT or GET.

At best, with the authors' preferred subjective (self-reported) measures of fatigue and disability, only approx 13% of patients experienced a minimal response to treatment with CBT or GET.
This was confirmed by Prof Peter Rowe at the FDA conference.


FDA video link:
http://www.tvworldwide.com/events/f..._archive.cfm?gsid=2251&type=flv&test=0&live=0

Watch Prof Peter Rowe at: 24.00
Watch Dr Snell at: 71.30
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
http://www.guardian.co.uk/science/political-science/2013/may/05/prince-andrew-royal-society-row

crony-ass, sick, inbred, greedy, vile, despicable, business-as-usual Britain! *spits*
this is how corrupt and monstrous our "system" is, rot in hell the lot of it
*goes and rebuilds Hadrian's Wall with lego bricks, very very slowly, 5 miles south of Liverpool, and also straight down* :p

Prince Andrew's election to the Royal Society sparks anger among fellows

Our national science academy should not be cosying up to the royals - especially one with such a chequered past
Prince-Andrew-007.jpg

Some fellows have objected to Prince Andrew's election as a "royal fellow". Photograph: Steve Parsons/PA
This should have been a great week for the Royal Society. On Friday, it unveiled the results of this year's election to its fellowship, the most prestigious honour (short of a Nobel Prize) that any scientist can aspire to. After criticism last year over the low number of fellowships awarded to women (just two out of forty-four), the line-up in 2013 was a lot more encouraging, with a record ten women elected fellows or foreign members. As Athene Donald has described, this is in part down to welcome efforts by the Royal Society to promote greater diversity in science, and to draw more women into its own nomination pool.
If only they had left it there, it would indeed have been "time for a small smile of optimism" as Athene Donald suggests. The problem came further down the list. In addition to its primary category of election by scientific merit, the Royal Society has long permitted a few more roundabout routes to a fellowship. One of these is through making an outstanding contribution to the wider scientific community. In recent years, Lord Sainsbury, the philanthropist and former science minister, and Lord Bragg, the writer and broadcaster, have been made honorary FRS under this heading. And this year, it was the writer Bill Bryson's turn, rewarded for his role in editing the Society's 350th anniversary book Seeing Further. (Youthful science writers with establishment aspirations might like to note that the Society's 400th anniversary is in 2060. It's never too early to start honing your pitch.)
The dissonant note in an otherwise progressive chorus came under an older category: that of the "Royal Fellows". These date back to the society's 17th century origins, under the patronage of King Charles II, and today include most of the leading lights in the House of Windsor. Until now, Prince Charles was the most controversial Royal Fellow, although his election in 1978 predated the vocal embrace of homeopathy and opposition to GM crops which has prompted his regular clashes with the scientific community.
But now, Prince Andrew has been invited into the Royal Society's ranks. And a fair number of his fellow Fellows aren't happy. First off the blocks was David Colquhoun, UCL's most famous pipe-smoking pharmacologist, who on Friday launched a full-frontal attack on his blog on what he called a "right Royal cock-up". And today, the story has hit the front pages of the Sunday Times, with even the society's former president, Bob May, reportedly "dismayed" over Andrew's election.
The objections focus first on Prince Andrew's track record as a "cheerleader in chief for the arms industry", with uncomfortably close links to a rogues' gallery of tinpot dictators in Kazakhstan, Azerbaijan and Kyrgyzstan. Controversy surrounding his role as a UK trade envoy, and his equally unsavoury association with a convicted US sex offender led to him resigning his role as "Airmiles Andy" in July 2011. Ministers and senior officials within the Foreign Office privately breathed a sigh of relief.
It was around this time that Prince Andrew started popping up more regularly at Royal Society events, offering to chair meetings and lend his support. (I was still working there at the time as director of science policy). The sensible response would have been to steer well clear, but as I witnessed at first hand, for such an incredibly clever bunch of people, elected themselves on merit (the very antithesis of hereditary royal privilege) many fellows of the Royal Society were susceptible to feudal levels of swooning at the merest flash of royal ermine. The centrepiece of its 350th anniversary celebrations in 2010 was an orgy of obsequiousness at the Festival Hall, with no fewer than seven Royals and 2000 guests in attendance to see Prince William receive his Royal Fellowship (no doubt for his outstanding services to art history, geography and steering helicopters).
The other objection that has been raised is over the election process itself. As David Colquhoun describes, Prince Andrew's fellowship was formally endorsed by just 147 – or 11% - of the Society's fellows. What's even more amusing is the form that the "election" took:
The proposal was accompanied by a ballot form. The form had a single box, labelled "I support the election of HRH the Duke of York KG GCVO as a Royal Fellow of the Royal Society". That's the sort of ballot form used for senior posts in the Royal Society. It would be popular in Kazakhstan or Saudi Arabia.​
Full credit to David Colquhoun for shining a light into one of the darker recesses of the scientific establishment. Of course, defenders of the decision will point out that this is the "Royal" Society, and a bit of old-fashioned bowing and scraping is part of its unique British charm. But there are plenty of equally prestigious institutions with a rich royal history that have modernised those networks of patronage, and aren't spending the 21st century with their heads rammed quite so firmly up the Windsor arse. Nullius in verba, old chaps, nullius in verba…
In my opinion, a bit less "Royal" and a bit more "society" is a better focus for our national academy in 2013.
James Wilsdon is professor of science and democracy at the University of Sussex and was previously director of science policy at the Royal Society. He is on twitter @jameswilsdon
 

Hip

Senior Member
Messages
17,824
It should be said, though, that Hanlon is right to draw attention to the story of virologist Myra McClure. Hanlon writes:
Professor McClure suspected that ME may be linked to that mouse retrovirus, making her an ME heroine. But in 2010, two years before Science published its retraction, she published a paper in which she showed that the XMRV-ME link probably had no scientific basis. As a result, she was subjected to a campaign of horrible abuse and threats.

This was a very distasteful affair, because McClure was doing good work, good biomedical science, and in fact ultimately did everyone in the ME/CFS community a great favor by helping to bring the XMRV debacle to an end. I thought it was grossly unjust that she was subjected to threats, and was somehow caught in the crossfire.

And Hanlon is must be commended on his appreciation that microbes likely underpin many diseases. Hanlon writes:
Viruses, rather than lifestyle issues or genetics, are now suspected to be linked to a host of conditions, from schizophrenia to heart disease. There is no prima facie reason to believe ME is not the same and, while XMRV is not the cause, another virus could be.
 
Messages
13,774
lol at the cover.

I agree with Hip about McClure though. (Even if Hanlon got it totally wrong. She was never an ME heroine... no-one had heard of her prior to her negative study with Wessely).

I semi-defended McClure from some of the criticism she got (and never saw any sign of a campaign of abuse and threats), but probably not enough. She did get some unfair criticism here. I think that she stumbled in to things, talking about how much Wessely was hoping XMRV was the cause of CFS, and not having any idea of the history around CFS... also, her view that XMRV was definitely not associated with CFS did not make sense while she was also saying that she thought XMRV was associated with prostate cancer. At that point in time, the evidence made that position untenable and I understand why it led some people to think that she was influenced in her assertions by prejudices about CFS. I don't remember any criticism of her after she had recognised that her positive findings for prostate cancer were a result of contamination, but most people had already decided that CFS and XMRV were unrelated by that point anyway.

I just stumbled upon a comment of mine on one of the stories Wessely did about dangerous militants from a couple of years ago, and it fits in perfectly well with this new thread too:

The disingenuous and, at times, downright dishonest debating tactics of these people is frustrating.

This is true... but it needs to be recognised that there are inaccurate and dishonest claims from CFS patients attacking them too.

It might only be a tiny minority, but because Wessely etc are operating from a position of power, they can choose to highlight any critic they want, and will then be given the benefit of the doubt about their own claim. Where as if a CFS patient were to describe the worst experience they had ever had with a doctor, this would generally just be dismissed as a meaningless anecdote.

eg: McClure is quite right to point out the stupidity of anyone suggesting that pharmaceutical companies would want to hide a link between CFS and XMRV... but I've only seen this suggested once here, and it was a claim that got instantly shot down, so it's clearly something almost universally rejected by patients, but it's now being presented in a national newspaper as illustrative of the concerns of those with CFS.
 

Hip

Senior Member
Messages
17,824
Some Major Errors in Michael Hanlon's Article:

Quoting Hanlon:
This man faced death threats and abuse. His crime? He suggested ME is a mental illness
Wrong. Wessely doesn't just say that ME is a mental illness, he also believes that ME is an illness that patients created themselves; Wessely believes that in effect, patients think themselves sick, and thus their sickness is "all in the mind".

Quoting Hanlon:
On the other side are the activists. These people say that any attempt to label ME as a "psychiatric" illness is to denigrate the suffering and to downgrade the disease as "all in the mind".
Wrong. Whether ME has a psychiatric component is an interesting consideration, and ME certainly involves several cognitive dysfunctions of mind, such as brain fog, nobody would argue with that. However, what makes ME patients extremely angry is not the suggestion that ME involves cognitive/mental dysfunctions, but the fact that Wessely indefatigably promulgates his worldview that these cognitive/mental dysfunctions are caused by the patients own aberrant belief system, ie, that ME patients think themselves sick, rather than there being a biological cause. Wessely thus suggests that ME patients are malingering — in essence that they fake their disease.

Imagine how any patient would feel if their doctor told them they were faking their serious disease. Imagine how you would feel if you were sick with say multiple sclerosis or Parkinson's, and rather than helping, your doctor instead said to you: "Look, you are just faking being ill, so don't waste my time, get out of here". Go to any hospital and try saying that to a sick patient. See what response you get. It's a horrendous thing to say, right? Yet this is what ME/CFS patients have faced for decades.

ME/CFS patients are understandably angry with the Wessely School psychiatrists, because due to the influence these psychiatrists have had on the medical profession, doctors assume ME/CFS patients are malingering, and thus just tell them: "You have somatization disorder" — the technical term that doctors use to say that you are unconsciously faking being ill.

Quoting Hanlon:
Wessely has been accused of just about every transgression going, including patient abuse and even, bizarrely, throwing a child into a swimming pool to check if his paralysis was genuine.
Wessely may not have been responsible for throwing a paralyzed child into a pool personally, but his worldview on ME/CFS — namely that ME/CFS is a brought on merely by the patient's belief system — was the likely reason the child's carers threw the paralyzed child into the pool. Due to Wessely's worldview on ME/CFS, the carers assumed the child's paralysis was due to a belief the child held, ie, that the paralysis was "all in the mind", and not caused by any biological condition. This is the fundamental danger of Wessely's pernicious worldview on ME/CFS.

Quoting Hanlon:
The primary symptom of the disease is fatigue, which can leave sufferers bedridden and unable to work or study for months, or even years.
Unable to work or study for months or even years? Try decades, or a whole lifetime. Whereas some diseases are a death sentence, ME/CFS, unfortunately, is often a life sentence.

Quoting Hanlon:
Most doctors who treat ME - also known as chronic fatigue syndrome (CFS) - believe that certain treatments, notably cognitive behavioural therapy and exercise therapies, provide the best hope for many sufferers to get better. Earlier this year a ground-breaking paper was published in the journal Psychological Medicine showing just that.
Wrong. As everyone knows, the paper published in the journal Psychological Medicine was something of a scam, in which the Wessely School authors redefined and significantly downgraded the meaning of the word "recovery", just so they could claim that cognitive behavioural therapy and exercise therapies lead to "recovery" from ME/CFS. To my mind, this ploy is tantamount to scientific misconduct, and these sort of dishonest machinations by the Wessely School only serve to further anger ME/CFS patients.