Origins of the Damning Label, "Extremist"

Hillary Johnson

I was skimming an article not long ago in the lay press about ME. The writer talked about ME patients as advocates and “extremists,” her casual tone suggesting extremist patients are simply a fact of life, a given, though she offered no examples of extremist activity. The story seemed like so much fluff and cliché to me, just another item to fill the space between the ads, I put it aside and never took it up again. After thirty-three years, there is only so much a body can bear. But her self-assured use of the word “extremist” set me wondering. In the years I’ve had this malady, I’ve yet to meet anyone I would describe as an extremist in the context of advocacy. The late Tom Hennessey reportedly interrupted CFSAC meetings shouting slogans and carrying signs. I’m deeply sorry I missed that for the sheer joy of it and I certainly would never categorize it as "extreme." Even that much activism was too much for the U. S. Government apparently. Eventually, security provisions were such that when patients in attendance required a bathroom break they were escorted to and from the proceedings by uniformed guards.

I’ve noticed journalist and public health Ph.D David Tuller was recently described as a “US activist” by proponents of the PACE trial. While many would argue this is true on its face, Tuller argues this label is erroneous and has demanded his academic credentials be used to describe him instead. He rightly recognizes the label “activist” is dangerously close to “extremist,” and a word that in the context of ME is viewed in the most negative light imaginable in the UK. Given Tuller’s enthusiasm to cross swords with the creators of the PACE trial, in particular, whose supporters launched the myth of extremism, the word “activist” makes his legitimate arguments--even his right to bring them--appear suspect and unwelcome.

A few days ago, I tweeted: When people talk about ME ‘extremists,’ apparently differentiating them from more acceptable ‘advocates,’ what or who are they actually referencing? People who use 4-letter words? People who criticize government figures? Seriously, what is an ME extremist? 

To my surprise the tweet has been "liked," at this writing, 191 times and retweeted 51 times. Since I’m neither Ronan Farrow nor Cher, those numbers seemed pretty high. What impressed me, however, were the myriad definitions of ME “extremists” offered up from the Twittersphere. Interesting, perhaps, was the fact that almost everyone embraced the label ‘extremist.’  

Here are some of the responses:

 

“…An ME extremist in UK:1) someone who has a robust diagnosis of the illness, or cares for s.o w. ME 2) someone who understands the illness by *living* it 3) someone who objects to being harmed by Wessely & co’s claptrap 4) someone who confidently speaks up about the harms”

 

“…basically, all of us with ME are extremists by definition of having ME. It is a medical dystopia. They are despicable, the doctors who caused this.”

 

“The fact we claim to have the illness is extremist to them! So, yes, everyone with ME. Even calling it ME rather than Chronic fatigue is an act of an extremist!”

 

Calling patients "Extremists" is one of the silencing techniques the W School uses to try to silence the patients.

 

Doctors, real doctors, medical people, nurses, etc.. don’t call patients extremists, they help them! There is a difference!

 

So utterly foul to label people 'in extremis' extremists. How can this verbal abuse on medical matters be acceptable?

 

The most serious ME extremist is someone who quotes Dr.Ramsay... today's Emmanuel Goldstein from Orwell's 1984.

 

Gosh, yes, quoting Ramsay is bad enough, so to have an actual diagnosis of Ramsay ME from a consultant neurologist who worked alongside Ramsay in 1980s makes you the devil, frankly. I know - and live - the truth that they tried to disappear. I know too much!

 

How radical to dare demand proper medical care & research $ from @HHSGov commensurate with disease burden & the use of the proper name & definition. 

 

ME advocates are children, youngsters and adults who may be housebound. Others are, like Emily, bed bound, incontinent and tube fed. The idea that sick and vulnerable people are extremists is one that has been orchestrated by the bio-psychosocial lobby.

 

Anyone with the temerity to answer back or question.

 

Yep, ME patients who won't just lie down, shut up & die are the bad guys! Human Rights Law proscribes vilification of disability! ??

 

Projection: The problem is that when people project their“stuff” onto us, they tend to act as if their projection has something to do with who we really are. They treat us, in other words, as if their projection were valid.

 

What is a #MyalgicEncephalomyelitis extremist? If you're a patient - Knowing that you're actually sick, being adamant that you are, and asking for biological research.If you're a scientist - Insisting that biological research is necessary and true.

 

I count myself as one...it’s a good thing: we extremists are sick and tired of criminal neglect of our gravely ill loved ones by ourgovernment.

 

Having well founded critiques but lacking either a doctorate or a knighthood is one way.

 

Whatever they are we need more of them. I'm thinking of the HIV-AIDS activists who made people uncomfortable and got funding.

 

Someone at the end of their tether who gets no support from any dr and has been damaged by the pace trial. Someone whose life is ruined and is thinking about giving up. Just a guess

 

To cling so rigidly on to an outdated ideological opinion that has been proven incorrect & harmful in the face of a huge body of biomedical evidence, quality science & lived patient experience. Now that’s extreme! They are accusing patients of what they themselves are guilty of.

 

1) According to the dictionary an extremist is: 'a person who holds extreme political or religious views, especially one who advocates illegal, violent, or other extreme action.'

 

2) I have never met an ME patient who advocates violence, nor seen one on social media. I know there are claims of death threats but a court said these were grossly exaggerated. I think the vast majority of patients would agree that threats of violence are unacceptable!

 

The argument that ME is physiological and requires biomedical treatment is not extreme.

 

Someone who demands to be treated as a human being.

 

Someone who is seldom Canadian.

I'm an extremist and proud to be one. Whenever I come across an incompetent scientist or incompetent medic I seem to have to explain to them the nature of their incompetence. I know this is extreme, but I can't help myself.

 

So basically anyone who doesn't reject the fast-growing body of research *proving* that ME is physical in nature and can potentially be treated (but not with CBT/GET)? They should worry about learning to do their jobs half-decently.

 

“It's tone policing, pure and simple. Criticising a lamb for bleating while it's hauled to the slaughter.”

 

Someone who disagrees with them.

 

In this context, "ME extremists" are people who rationally argue PWME be diagnosed with the disease they have, instead of CFS or SEID, and ME research be conducted on subjects who have ME. This appears to be an extreme position because anti-ME HHS pseudoscience is now the norm.

 

I tried to remember when the extremist label was introduced given that it seems to have become common parlance in the media, as if fact. And then I remembered I already had written about the introduction of allegations of violence and death threats by ME patients. The myth was begun by the terroristic Simon Wessely and I commented on it in 2011 when Wessely began his campaign.

Simon took his complaints to the BBC and newspaper journalists. He told the press he would feel safer in war-torn middle eastern countries like Iraq and Afghanistsan than the streets of London. (His assumption being, apparently, there were no ME patients in those countries.) There was discussion in the UK press that ME patients were at least as dangerous as animal rights terrorists, who were then blowing up and setting fire to labs where animals were being held.

I also remember, even before such claims, reading a pamphlet UK medical officials prepared for nurses and psychologists seeking to work in “CFS” clinics in the UK where CBT and GET were to be offered. The letter warned potential employees that ME patients could become “violent” when confronted with suggestions their disease was not real. The document noted that patients would require careful monitoring should signs of impending violence emerge and that the clinics would have security staff on hand to protect staff from ME patients should they turn violent.

One of many factors that may have precipitated Wessely's actions was the discovery of XMRV in ME sufferers in the US. Late in 2009, a Science magazine article about the discovery of a murine retrovirus infection in a majority of a large cohort of ME patients and in from 4 to 7 percent of the general population was published. Science authors suggested the virus might be the long-sought cause of the ME, as well as some lymphomas and prostate cancer, too. Immediately on the heels of the Science article, Wessely and Co. hired Imperial College retrovirologist, Myra McClure, to perform a replication effort on a small number of patients who had been identified by the Oxford criteria. McClure got negative results, thrilling the psychiatrists, who paid to have McClure's findings published online. Clearly, they were in a hurry. By 2011, when Wessely began his "death threat" claims, the virus, XMRV, had yet to be "de-discovered" by Columbia's Ian Lipkin and, in fact, it had been reproduced in some instances. Wessely may have been stressed to the max by the fact that XMRV was still a viable hypothesis in 2011.

As with so many issues in ME, what started as a wildly exaggerated rumor planted by UK shrinks—“extremism”—has entered the lexicon and may inevitably appear in press reports going forward, years after Wessely made his initial, unsubstantiated accusations. For the general public, Wessely's views of ME, I imagine, are more tolerable than the reality.

I enjoyed reading the defiant tweets from ME sufferers, who recognize the real terrorists. At this juncture, they’re more than happy to embrace the label if it means they question the status quo.

 

It seems apt to post a piece I wrote for my web site in August of 2011 at the time Wessely began his torrent of accusations, launching a theme that has spread round the world and lasts to this day. In August 21, I updated the latest developments of Wessely’s campaign in a second, shorter post. I’ve included the comments that the first post generated below both posts.

Also, it is now possible to comment on Eye View articles, if anyone has been itching to do so!

 

Cry Me A River

August 3, 2011

 

Is it just me, or does the British press appear to have lost its collective mind? How many times do these journos need to have Malcolm Hooper and other rational, clear-headed people take pains to explain to them that Simon Wessely—a.k.a. Crybaby—is up to his neck in nasty deeds, fraudulent science and conflicts of interest that rise to the level of obscene? (My language, not Hooper’s.)



One headline, “Torrent of Abuse…” says it all. Poor wee Simon! Except that in truth he has had a free ride for decades on the backs of ailing and dying patients and British taxpayers. Every time Wessely whines, the question of just who is being abused is very much in play.



Wessely’s claim of alleged death threats are taken seriously by the UK media and have created a fresh platform for a new round of punditry unlike that seen since the PACE trial results of last February. We've seen benighted sermons on everything from removing the stigma from mental illness to mind-body dualism to admittedly funny pleas of “don’t shoot the messenger.” These musings pay homage to the so-called Wesselyites who specialize in “fictitious illness,” a construct this group created years ago to explain away a pandemic disease that is entirely beyond their realm of professional expertise. Imagine Pee WeeHerman running the space program. When the true outlines of this pandemic are finally drawn, I suspect the Wesselyites theories will go down in medical history as a despised and idiotic philosophy much the way eugenicist principles are reviled today. Their activities and influence will function as a cautionary tale. Unfortunately, that likelihood doesn’t help patients in the present day.

One-ManPity-Party



What’s peculiar is that Wessely’s sound bites have rarely communicated anything that sounded particularly true or even rational, yet they go unexamined by reporters. One recent and particularly striking example last March happened to be on the subject of retroviral infection: "...frankly, even if we found it there is nothing we are going to do about it..." etc., ad nauseum. Stalwart Malcolm Hooper has been meticulous about Wessely’s history and comments. For more examples and a judicious chronology, see Hooper's recent appraisal, gratis the MECFSForums.

In the last few weeks, it seems Wessely chose to take his defamation strategy to new heights, however, ramping up his rhetoric by suggesting patients are not merely delusional but homicidal. In a BBC radio interview, he also reportedly told a reporter that he and his mates have started taking precautions that animal researchers in their institution employ. Wow. Stun guns, tranquilizer darts and rubber gloves at the ready? The reporter failed to ask Wessely to elaborate, unfortunately. The BBC cited a brief letter that ended with the phrase, "You will all pay." That's a death threat? As Angela Kennedy noted on the ME/CFS Forum, "So Gargamel was threatening to KILL the Smurfs every Sunday then?" The word "bullshit" was used to describe Wessely's research and someone else called him an "evil bastard." Since the interview aired at 8 a.m. during the breakfast hour, parents complained that BBC had been inconsiderate of children who might have been listening in. (See "BBC Turns the Air Blue," courtesy ME/CFS Forums)

I've listened to scientists call each other bastards and refer to one another's work as bullshit for twenty-five years. Sometimes it's jocular, sometimes it's not. That's how human beings talk. Not fit for the ears of children perhaps, but a fact of life. And I'll add that if Wessely had heard what I've heard other researchers say about him, he might really be on edge.

Wessely's comments to the press that he feels safer in Iraq and Afghanistan than he does in London and that he is afraid to open his mail (the implication being murderous M.E. patients lurk around every corner awaiting his footfall, or may be sending him bombs or anthrax through the British post) feels equally calculated and hostile. If he actually believed any of these claims, why would he continue manufacturing public comments guaranteed to agitate the community he claims is threatening his very life? And if the police really believed it, wouldn't they advise him to stop talking about it to the BBC? Doesn't the entire kerfuffle have a vaguely disingenuous feel?

A more reasonable explanation might be that Wessely is working to cultivate a welcoming environment for a new book by his acolytes about “chronic fatigue syndrome” and “fictitious illness,” to be published next month. Perhaps his long-standing attention-seeking behavior is reaching pathological proportions and he felt an urge to ratchet up the drama another notch. More simply, perhaps he is trying to keep the press distracted from the actual science going on that could end in his professional humiliation. Alternatively, might he in fact simply be projecting his own desires about what he would like to do to patients?

As far as I'm aware, he has failed to produce a shred of evidence that he has actually received bona fide death threats, so if he was just having a joke, he should have clarified that to reporters, but he didn’t. Last I knew any reporter who grasped what the job is about would require evidence before reporting such a tale--you know, police reports, comments from police and ME sufferers and the like. Yet, when Wessely speaks, the BBC, the Times,the Guardian, the Economist, and myriad other major news organizations genuflect.

BBC—can you say, “Fact check?”

If a note ending in the words, "You will pay" sends Wessely running into the arms of BBC radio correspondents for succor, one can only imagine his shattered state of mind had he been subject to anything akin to the full-throttle rage of American AIDS activists of the 1980s, those years when playwright Larry Kramer declared the American AIDS Czar Tony Fauci a murderer and a Nazi. Or when activists were marching in the streets and wearing white coats smeared with fake blood and carrying signs bearing slogans like, “FDA—YOU SLAY ME,” or throwing condoms filled with ketchup at the heads of NIH scientists, or chaining themselves to Dan Rather’s desk on the CBS Evening News set at air-time. Indeed, where was the press' finger-wagging in those days, decrying such tactics as if AIDS activivsts were dangerous extremists and hurlers of death threats? The press kept a reasonably objective posture in those days. Imagine if the voices of AIDS patients and scientists studying the disease were censored in the press?

And what about the ad hominem, career-destroying abuse heaped upon doctors and scientists who have taken this disease seriously over the last three decades and are responsible for advancing the science, abuse that has come exclusively from those in their own profession? The mainstream press has yet to deem that story worthy of coverage, nor do I recall the recipients of these insults and ridicule dialing up reporters to whine.

Interestingly, there are historical precedents for Wessely’s behavior, though they took a different form. The late Stephen Straus, his American counterpart and the US government’s premiere “expert” in this disease throughout the 1980s and 1990s, exhibited significant paranoia and self-pity, too. Like Wessely, he was deeply worried about retaliation. He steadfastly refused for fifteen years to attend any scientific conferences where he might run the risk of encountering a patient. At least once, he successfully prohibited members of the press from attending a government-sponsored conference that by federal law was open to the public when he learned they might also be patients. It’s possible some portion of the press corps would be missing if government scientists stipulated similar terms at CROI (the annual Conference on Retroviruses and Opportunistic Infections) or other AIDS conferences. 

A big difference was that Straus didn’t invite the lay press to his pity-parties. He was a stealth player. At one juncture, he took his enforcer, AIDS Czar Anthony Fauci, to Capitol Hill to intimidate at least one politician there, Rep. John Porter of Illinois. Straus demanded that Porter tell his constituents—patients and their relatives—to lay off with the letters and the phone calls begging that Straus be fired or reassigned. And guess what? It worked. Former patient advocate Porter, sitting in his mahogany-paneled private Congressional office, caved at the sight of the AIDS Czar staring him down, according to Porter's top aid.

Compared to the UK’s whiner, Straus had class—okay, let’s call it muscle. He kept all the dysfunction in the family rather than launching a press tirade in which he accused his experimental subjects of making death threats against him and declaring that war-torn nations were safer places for him than the National Institutes of Health campus in tony Bethesda, Maryland. 

Wessely’s looking a bit desperate to me, even if he does have the press in a trance. Any True Blood fans out there? Maybe he’s “glamoured” them. Nevertheless, every week, the scientific literature lends more credence to the false nature of his claims; indeed, the literature of decades back undermines his body of claims. And patients and their advocates grow bolder and more organized in their efforts to counter lies and propaganda. 

It’s tragic that the UK media, in particular, avoids science coverage of this disease, but that would mean actually reading and concentrating and waiting for call backs, I suppose. I know it's hard, I've been there, I send them my sympathies, but presumably they are collecting salaries to do just that. If only they could bring themselves to report the science, then surely somewhere in this recent melee they would have at least mentioned the fact that a new international definition has been issued that happens to restore the British-originated name for the disease, (myalgic encephalomyelitis) or that a new paper re-confirming heart failure in the disease just appeared in the peer reviewed scientific literature. In truth, I think it's pretty clear that the UK press seems uninterested in the disease, itself, but excessively interested in the snickering drama queens who control their nation's research agenda. 

The Wesselyites manipulate their profession--psychiatry--in such a way as to engender and encourage shame. Is Wessely’s recent escalation from claiming patients are delusional/mentally ill to claiming they are angling to murder him symptomatic of his own subconscious knowledge that his own shame may someday be overwhelming? 

The people Wessely compares, by implication, to animal rights terrorists, happen to be inveterate writers of Thank You notes to anyone who advocates on their behalf or simply refuses the opportunity to abuse them. It's difficult to imagine a more polite, if maligned and marginalized, constituency on the planet. Yet, if I were to write a note to Wessely, it would go something like this: 

Wee Simon, when will you stop whining and making up stories? The quarter-million sufferers in your country have enough travail without being accused of plotting your murder, too. Eventually, science will unravel your fantastic, often hilarious claims of recent decades and you will have to face your professional death. Rest easy. History will remember you as one of the biggest nutters in contemporary medicine. Until then, thank you for making so many people angry. It’s a great motivator. 

Sincerely yours, etc

 

 

Animal Magnetism

August 21, 2011

 

 

Wessely has upped the ante in the UK. A new Observer piece says UK police now consider M.E. "militants" to be as "dangerous and uncompromising as animal rights extremists." Armed "stalkers" and the by now old hat message from a frustrated sufferer, "you will all pay..." were cited. Myra McClure takes the opportunity to pile on, too. (Creepy) Crawley, for her part, says the disease results from social deprivation. Tell that to Cher and the CEO multi-millionaires who've long ago dropped from sight.

The Observer is the first publication I've seen employ the word "militant" to describe an M.E. patient. "Uncompromising" ain't too shabby, nor is "dangerous." Now, if only the uncompromising stalkers could all show up in the same place at the same time and block traffic. For starters.

Keep it up wee Simon! Keep churning, UK press! The weirder the better. H. pylori was accepted by MDs as a curable bacterial disease only when a story about it appeared in the Australian equivalent of the National Enquirer--suggesting you never know where and when truth will assert itself. The medical establishment had ignored the scientific evidence on H. pylori for decades.

 

 

 

Comments (from August 3, 2011 post)

1.    August 4, 2011 6:23 PMEDT 

Poor Simon indeed. Simple Simon. Methinks he needs a little CBT to get his attitude adjusted.

- Pat

2.    August 4, 2011 6:43 PMEDT 

Bravo! I loved reading this. I wish we had the ability to march in protest as people with other illnesses have done. However, since we can't, supporting those who speak out is the next best thing. So thank you Hillary. Thank you and keep up the year work!

- Karen O.

3.    August 4, 2011 8:32 PMEDT Edit

F*ck yes!

- Joey H.

4.    August 4, 2011 8:49 PMEDT 

Great blog, as ever. We all want S Wessely to be here, hale and hearty, so that we may witness the humiliation that's due him. It's coming closer each day with each piece of solid scientific evidence. I wish him a very, very long life, indeed!

- Honora

5.    August 4, 2011 9:01 PMEDT 

The complaints about the behavior of ME patients are clearly a diversionary tactic by which those who wish to bury HGRV research hope to delay the inevitable acceptance of Dr. Mikovits' research. That research is solid and neither John Coffin's talk about mice in swimming pools nor Simon Wessely's whining about being afraid of housebound ME patients is going to change the facts. They are pulling out all the stops trying to make patients look as ridiculous as they can, and in the process they are exposing their own preposterous position. They can't put this genie back in the bottle the way they did ElaineDeFreitas' discovery in 1990. This is 2011 and patients with ME are awake andalert. This time the truth will come out.

- Patricia Carter

6.    August 4, 2011 11:25PM EDT 

Big Thank you from a UKer.

- fly

7.    August 4, 2011 11:48PM EDT 

Actually, Gargamel was trying to kill the Smurfs, he wanted to alternatively eat them and/or kill them in order to create a potion which wouldt urn matter into gold. No lie.

Anyway, I think the whole 'cry me a river' response is misguided, as I do not doubt that Prof. Wessely has indeed received legitimate threats. The reason why I do not doubt this is that in the past I myself have actually given consideration to such actions, including trying to morally justify such actions to myself. Kind of a 'if X amounts of people receive Y amounts of abuse, neglect and degradation, and Z individuals are largely responsible for this, would violent action ever be justifiable?' Now I realize that if anyone were to commit such actions then this would possibly be one of the worst things which could happen to ME/CFS patients, but let's just say that at the time it was probably a good thing that the Atlantic Ocean separated myself and the psychobabblers.

One other thing which has given me some insight into the situation is a certain ME/CFS patient forum that is so into XMRV that they are totally wacked out on the issue. I've wondered what would happen if, for instance, I was to have won the lottery, funded some ME/CFS research (which most likely would not include work on XMRV), and had those wackos come after me for being 'part of the conspiracy' for not funding XMRV research, which is ludicrous.

Instead of threats sent to researchers, ME/CFS patients would probably be much better served by committing acts of civil disobedience, such as sit-ins, etc.This would have both the effect of publicizing our plight as well as getting our message across in a sympathetic manner, which acts (or threats) of violence and/or destruction would not do.

- J

8.    August 4, 2011 11:53PM EDT 

Hillary, you have been on my mind because you have been so quiet. I am so glad to see you back.

- Tina Tidmore

9.    August 5, 2011 12:56AM EDT 

Well said and thanks for being a brave women and speaking the truth. Shame on them!!!

- Pamela B.

10. August 5, 2011 3:01 AM EDT 

Yes I also feel that Simon- and followers- have been getting desperate for some time and are now displaying symptoms of Chronic Attention Seeking Syndrome.
Thank you for writing this piece Hillary.

- onirical

11. August 5, 2011 5:07 AM EDT 

researchers are being severely criticised for their methods and not their manners. They simply won’t adhere to the scientific method and when they get called on the quality of their work they are using the threat and intimidation card. The scientific method is very simple. It begins with empirical observations then an explanatory hypothesis is formed and challenged by rigorous attempts to disprove the explanatory model in question. The Coffinites and Wessleyites begin with an entrenched belief and then seek subjective or psuedoscientific information in support of their belief. This is the antithesis of the scientific approach. If they want to avoid criticism they should stop sulking and "running to Momma crying" and adhere rigorously to the scientific method

- Gerwyn

12. August 5, 2011 5:12 AM EDT 

Hi J,
I doubt Simon W got any simple 'threats'. He has been sent - hundreds? thousands? - of letters and emails pleading with him to look at the facts about biomedical research, including links and references. Asking him to stop abusing patients. In frustration sick people might use gritty language, but as we find it hard enough to get to the local shops, actual physical danger to the professor is rather unlikely.

That limited ability to get out and do anything is why we are unable to mount the sort of protests you suggest.

The worst thing I heard read out on the radio was "you will pay" -like what goes round comes round? This whole media circus was orchestrated, likely to take the spotlight from all the positive evidence that people with ME need treatment other than talking therapy and exercise programs.

Simon Wessely is the media spokesperson about all things ME for the Science Media Centre, the one stop shop for info on science subjects for the British media. Hence the lack of coverage on research, and his easy access to the airwaves.


- Jane Clout

13. August 5, 2011 5:28 AM EDT 

You truly nailed the situation, Hillary! Thank you, and Brava!

- David Peterson

14. August 5, 2011 5:33 AM EDT 

Once again Hillary, a wonderfully articulated and witty response. We in the UK applaud.

- R Cox

15. August 5, 2011 6:17 AM EDT 

Frankly I really do not care if the "esteemed" Simon Wessely has received any death threats over the years. Frankly if anyone deserves such discomforting correspondence then he does. Such scenarios are not unknown of for individuals who hold a high exposure & notoriety within public life. The question, if there is one in this, for me is whether any such death threats were deemed legitimate & serious enough to report to the police and moreover whether the police considered them valid enough to warrant any further investigation. My reaction to the absurd behaviour of Simon Wessely is simply this "put up or shut-up". Take some action if you arer eally genuinely concerned for your life Simon Wessely. Otherwise please grow-up & try acting like a responsible adult. With some poise & dignity.

To me it is seems very clear that this is a very obvious ruse by Wessely & his establishment cronies to deflect attention away from the real scientific issues that exist in the world of M.E. XMRV research for example.. Issues that Wessely & the U.K. establishment seem to be running scared of. Crystal clear in fact.

- price

16. August 5, 2011 6:30 AM EDT 

In response to J
I think Hilary's Blog was in response to any lack of evidence for death threats towards Mr. Wesley, and in that respect was very well written. J you may notice that lack of evidence generally as a theme tends to raise the ire of ME suffers and anyone else poorly treated and systematically abused by the medical establishment on a basis of lack of facts, but most likely not to the point of death threats..... people who base their whole careers on assumptions and treat others accordingly can only be prone to making wild accusations in my opinion..... it's called 'sour grapes' you may have heard the phrase...having clarity within research in the media has absolutely no resemblance to any middle eastern conflicts... what were you thinking to come up with that one are you on acid?? but anyways.... lol

- JM

17. August 5, 2011 6:38 AM EDT 

I filled with tears at what you said about the thank you notes. So many of our researchers are well loved and have our gratitude.

My friends with MS know very little about the research being done for them, they just have a quick read of what is written in the charity magazines. We have had to be our own doctors and advocates.

We are a very well informed, self educated group and that is a threat to those who perform bad science as we do the "peer review" they should be getting if the journals were doing their job properly.

I think it is safe to say that there has never been any real threat to SW or the others. They have no reticence at going to the press or bringing legal proceedings so it would never go unreported.

The idea that it is "bad patients" that are preventing proper research and funding has been circulating for ages, even among people who should know better. It cleverly puts the blame on us, as they have done by so many accusations again and again and again.

- Mithriel

18. August 5, 2011 7:36 AM EDT 

With you all the way, Hillary. Thank you for another excellent blog.

Wessely also co-authored a paper called 'The Legend of Camelford' in which he ascribed the sickness experienced by Camelford's residents' to be due to a belief that drinking water contaminated with massive amounts of aluminum would carry harmful consequences. It's a tragically familiar read.

As it turned out, they were as sick as anyone would be if they had consumed toxic quantities of aluminum, an injury further compounded by the water authority's attempt to flush the system causing zinc and lead from the pipe work to be released into the water.

- Sue Howley

19. August 5, 2011 8:12 AM EDT 

It's "funny" but the only comment on here that makes the poster seem like a "wacko" is the one denigrating a "certain ME/CFS patient forum" for being full of "wackos". Make your own minds up.

Anyway, great piece, and so true, from you Hillary. Thank you once again.

- James

20. August 5, 2011 8:28 AM EDT 

Brilliant!

- V99

21. August 5, 2011 10:29 AM EDT 

@ Patricia Carter "mice in swimming pools"
They throw them in to see if they sink or swim? For shame!

- Anonymouse

22. August 5, 2011 11:34 AM EDT 

@the person calling themselves J

Yea yea, perhaps have a go at reading the HGRV literature before attempting to manipulate people toward your belief system. People are not falling for it. Scientific facts speak for themselves, the data says the virus is there.

- Non HGRV denier

23. August 5, 2011 1:28 PM EDT 

The Weasel needs some CBT for his Paranoid Personality Disorder...
http://psychcentral.com/disorders/sx37.htm

- Jerry

24. August 5, 2011 1:40 PM EDT 

So the Hanna-Barbera cartoon- on every Sunday at one time, a children's show, had Gargamel want to openly kill the Smurfs? In a children's cartoon, which is what I was referring to? Have to ask...

- Angela Kennedy

25. August 5, 2011 1:48 PM EDT 

That's what I thought you were referring to. It just sounded funny to me. I had never heard of Gargamel.

- Hillary Johnson

26. August 5, 2011 3:36 PM EDT 

Hillary, you always write with such truth and style. Thanks for taking care of the sufferers when the so called "Drs" won't.

- Judy Frederiksen

27. August 5, 2011 4:09 PM EDT 

For Jerry,

You may have a point but I'm inclined to think Narcissistic Personality Disorder is much nearer the mark: probably right on the money :):http://www.mayoclinic.com/health/narcissistic-personality-disorder/DS00652

- R Cox

28. August 5, 2011 4:25 PM EDT 

: ) Gargamel has his own Wikipedia page. From that page: "Sometimes he wants to eat the Smurfs, other times he wants to use them to make gold, and still other times he has even more bizarre uses for them (in one instance he is so enraged by his loss that he yells "I don't want to eat them, I don't want to turn them into gold, all I want now is to DESTROY THEM!"). Though he often catches Smurfs who wander by his home or which he happens across in the forest, he does not know the location of the hidden Smurf village, a fact which continually frustrates him."

Sound familiar?

Thank you, Hillary. Please continue your writing. Your efforts are appreciated.

G. who is XMRV+.

- G.

29. August 5, 2011 5:03 PM EDT 

I think I have found the source of the "threats" that Wessely is apparently referring to:

http://www.youtube.com/watch?v=zYKO9iO6r1g

- Andy Millman

31. August 5, 2011 8:45 PM EDT 

Thank you for speaking so honestly about this Hillary.

My favourite quote in the blog being "History will remember you [Simon Wessely] as one of the biggest nutters in contemporary medicine."

- Carole C

32. August 5, 2011 10:18 PM EDT 

Great column. One of your best. Good catch on the book to be eleased soon by Weaselly. I didn't know that. How are we going to deal with the reviews?

- Mary Schweitzer

33. August 5, 2011 11:53 PM EDT 

It is well known that psychiatrists are at risk of bodily harm and threats. He seems to have conveniently forgotten that dealing with ME/CFS patients is much safer than psychiatric diseases.

But we should also point out that others in the field, psychologists such as Dr Jason who also pursue psychosocial research into ME/CFS don't receive such threats. Perhaps because Dr Jason actually has an understanding of the disease and doesn't misinterpret the data.

- Anonymous

34. August 6, 2011 12:14 AM EDT 

This would be funny if it weren't for the incredible harm his actions have caused to people with neurological M.E. since he and his colleagues hijacked all research and treatment funding the physical illness in the 1980s, and started a media campaign of hate against them.

How much appalling suffering and death have they caused? One example of the living hell he has caused can be found in Kay Gilderdale's book 'One Last Goodbye'.

- T.S.

35. August 6, 2011 2:12 AM EDT 

Mr and Mrs Wessely are both members of an interconnected & powerful group of neoliberals out to save money on welfare.
Analysis here
http://think-left.org/2011/08/04/welfare-reform-and-mecfs/

- Anonymous

36. August 6, 2011 2:17 AM EDT 

Oh yes ME patients are just really out to get the man that clearly must have been picked on as a child or something. So just how dangerous can patients be while laying in their torturous long-term death beds? Hey maybe that's what he's afraid of. we actually might just get well when our lifelong retrovirus is treated. Can't have that can he? Maybe he just fantasizes or has reoccurring dreams of well patients out to get him. His abnormal thoughts of harm are becoming his reality after 30 years. Could be his conscience manifesting as abnormal beliefs and perception disorder. It's really too bad that patients with this illness are who he decided to take his revenge out on when he grew up. They do have therapy Simon for your childhood trauma and obvious paranoia! There is also medication you could try?

- Robin

37. August 6, 2011 2:20 AM EDT 

You had me at "If Pee Wee Herman ran the SpaceProgram" statement! Perfect analogy. I Think If This Wessely guy’s life is in Danger then we should help him out immediately.

I'll pitch in 10 bucks towards buying him a ticket to Kabul, The Hot Zone of the Afghanistan action. He has stated he would feel/be safer over there. I think a wonderful Christmas present, perhaps timed with his upcoming Book release would be to all pitch in and send him a ticket along with an escort for security.

He might be safer on a military transport for security though. Since he does not believe in CFS/ME or GWI....he shouldn't have a problem flying in a viral transport machine with infected soldiers sitting all around him for 20 hours straight.

- Julia Hugo Rachel

38. August 6, 2011 6:38 AM EDT 

Our Intrepid Reporter, Ms. Hillary, hits one out of the park again! please note my "NOTES" section reports about an encounter with the weasel and another about the late, great Stephen Straus....for your enjoyment! xo TMH

- thomas M. Hennessy, jr

39. August 6, 2011 8:28 AM EDT 

Double page spread, today, in Saturday's main section of TheTimes:

http://www.thetimes.co.uk/tto/​science/medicine/article311683​1.ece

Doctor’s hate mail is sent by the people he tried to cure

Stefanie Marsh
August 6 2011 12:01AM

Copyright article, behind a paywall or free access to those with subscriptionsfor the print editions.

- Suzy Chapman

40. August 6, 2011 9:15 AM EDT 

http://www.meassociation.org.uk/?p=7552 Wessely re-writeshistory: The Times (UK) Saturday 6th August.

- R Cox

41. August 8, 2011 4:36 AM EDT 


Reposting because coding glitches had crept into the URLs. If glitch persists,this post can be read on Co-Cure archives, July 2011, Week 3: 18 July:

https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1107c&L=co-cure&T=0&P=2266

Hillary writes:

"A more reasonable explanation might be that Wessely is working to cultivate a welcoming environment for a new book by his acolytes about “chronic fatigue syndrome” and “fictitious illness,” to be published next month."

Not sure whether this is the book Hillary is thinking of, but I put the following out on Co-Cure on 18 July:

ACT: New book: Medically Unexplained Symptoms, Somatisation and Bodily Distress

From Suzy Chapman for http://dsm5watch.wordpress.com
18 July 2011

Note: Four members of the DSM-5 "Somatic Symptom Disorders" WorkGroup are contributors to this new book, published in July: Arthur Barsky, Francis Creed, Sing Lee and Michael Sharpe.

This book appears to have developed out of the White Paper by the"MUS" workgroup of the European Association for Consultation Liaison Psychiatry and Psychosomatics [1], on which I have previously reported and meetings held in Manchester in May 2009 [2] and Munich in September 2009 [3]:

Published by Cambridge University Press, 14 July 2011

Medically Unexplained Symptoms, Somatisation and Bodily Distress: Developing Better Clinical Services.

Creed, Francis; Henningsen, Peter; Fink, Per

Product details

Hardcover: 288 pages
Publisher: Cambridge University Press (14 July 2011)
Language English
ISBN-10: 0521762235
ISBN-13: 978-0521762236

RRP: £55

Product Description

Medically unexplained symptoms and somatisation are the fifth most commonreason for visits to doctors in the USA, and form one of the most expensivediagnostic categories in Europe. The range of disorders involved includesirritable bowel syndrome, chronic widespread pain and chronic fatigue syndrome.This book reviews the current literature, clarifies and disseminates clearinformation about the size and scope of the problem, and discusses current andfuture national and international guidelines. It also identifies barriers toprogress and makes evidence-based recommendations for the management ofmedically unexplained symptoms and somatisation.

Written and edited by leading experts in the field, this authoritative textdefines international best practice and is an important resource forpsychiatrists, clinical psychologists, primary care doctors and thoseresponsible for establishing health policy.

About the Author

Francis Creed is Professor of Psychological Medicine, School of Community-BasedMedicine, University of Manchester, Manchester, UK.

Peter Henningsen is Professor of Psychosomatic Medicine, Technical UniversityMunich, Munich, Germany.

Per Fink is Professor of Functional Disorders, The Research Clinic forFunctional Disorders and Psychosomatics, Aarhus University Hospital, Aarhus,Denmark.

Some pages of this book can be read on Google Books at:

http://books.google.com/books?id=UQjdZrkyWkoC&pg=PA1#v=onepage&q&f=false

Contents

1. Epidemiology: prevalence, causes and consequences Francis Creed, Arthur Barskyand Kari Ann Leiknes;

2. Terminology, classification and concepts Peter Henningsen, Per Fink,Constanze Hausteiner-Wiehle and Winfried Rief;

3. Evidence-based treatment Francis Creed, Kurt Kroenke, Peter Henningsen, AlkaGudi and Peter White;

4. Current state of management and organisation of care Per Fink, Chris Burton,Jef de Bie, Wolfgang Söllner and Kurt Fritzsche;

5. Barriers to improving treatment Peter Henningsen, Christian Fazekas andMichael Sharpe;

6. Gender, lifespan and cultural aspects Constanze Hausteiner-Wiehle, GudrunSchneider, Sing Lee, Athula Sumipathala and Francis Creed;

7. Medically unexplained symptoms in children and adolescents Emma Weisblatt,Peter Hindley and Charlotte Rask;

8. Identification, assessment and treatment of individual patients FrancisCreed, Christina van der Feltz, Else Guthrie, Peter Henningsen, Winfried Rief,Andreas Schröder and Peter White;

9. Training Per Fink, Kurt Fritzsche, Wolfgang Söllner and Astrid Larisch;

10. Achieving optimal treatment organisation in different countries -suggestions for service development applicable across different healthcaresystems Francis Creed, Peter Henningsen and Richard Byng; Index

Contributors

Francis Creed, Arthur Barsky, Kari Ann Leiknes, Peter Henningsen, Per Fink,Constanze Hausteiner-Wiehle, Winfried Rief, Kurt Kroenke, Alka Gudi, PeterWhite, Chris Burton, Jef de Bie, Wolfgang Söllner, Kurt Fritzsche, ChristianFazekas, Michael Sharpe, Gudrun Schneider, Sing Lee, Athula Sumipathala, EmmaWeisblatt, Peter Hindley, Charlotte Rask, Christina van der Feltz, ElseGuthrie, Andreas Schröder, Peter White, Astrid Larisch, Richard Byng

--------

Preface available to view

Chapter One Epidemiology: prevalance, causes and consequences Frances Creed,Arthur Barsky and Kari Ann Leiknes

Pages 1, 2, 5, 6, 9-12, 14, 16-19, 21, 35-38, 42 available to view.

Chapter Two: Terminology, classification and concepts Peter Henningsen, PerFink, Constanze Hausteiner-Wiehle and Winifried Rief

Pages 43-46, 49 available to view.

Pages 50 to 258 of this book are not available to view.

"They [unexplained bodily symptoms] form one of the most expensivecategories of health care expenditure in Europe. This book makes the case forshifting some of this expenditure away from numerous investigations for organicdisease and towards effective treatment of bodily distress." (Preface vi)

"Since the traditional labels 'medically unexplained symptoms' or'somatisation' are so unhelpful, we propose the term 'bodily distress' as amore useful term for these disorders..." (Preface vi)

"ICD-10 included neurasthenia (chronic fatigue), as one of the somatoformdisorders. This is considered here as chronic fatigue syndrome under theheading of functional somatic syndromes." (Page 8)

Some discussion of functional somatic syndromes on Page 10-16.

DSM-5 proposals for "CSSD" discussed briefly on Pages 43-45 withdiscussion of alternative terms (bodily distress disorder, functional somaticdisorder/syndrome).

Current classification of "Somatoform Disorders" in DSM-IV and ICD-10discussed on Page 46.

--------------

References and related material:

[1] Patients with medically unexplained symptoms and somatisation - a challengefor European health care systems: A white paper of the EACLPP Medically UnexplainedSymptoms study group by Peter Henningsen and Francis Creed:http://www.eaclpp.org/working_groups.html

http://www.eaclpp.org/documents/Patientswithmedicallyunexplainedsymptomsandsomatisation_000.doc


[2] Is there a better term than "Medically unexplained symptoms"?Creed F, Guthrie E, Fink P, Henningsen P, Rief W, Sharpe M and White P (Journalof Psychosom Research: Volume 68, Issue 1, Pages 5-8 January 2010) discussesthe deliberations of the EACLPP MUS study group. The Editorial also includesreferences to the DSM and ICD revision processes.http://www.ncbi.nlm.nih.gov/pubmed/20004295

[3] European Science Foundation: Setting Science Agendas for Europe

Exploratory Workshop Scheme, Standing Committee for the European MedicalResearch Councils (EMRC)

ESF Exploratory Workshop on "Understanding the genetic, physiological andpsychological mechanisms underlying disabling medically unexplained symptomsand somatisation", Munich, 10-12 September 2009

Report on September 2009 European Science Foundation workshop:
http://www.esf.org/index.php?eID=tx_nawsecuredl&u=0&file=fileadmin/be_user/ew_docs/08-041_Report.pdf&t=1287485446&hash=133780e153fa8ef0ff02c62b9418b142


[4] "One single diagnosis, bodily distress syndrome, succeeded to capture10 diagnostic categories of functional somatic syndromes and somatoformdisorders." Psychosom Res. 2010 May;68(5):415-26. Fink P, Schröder A. TheResearch Clinic for Functional Disorders and Psychosomatics, Aarhus UniversityHospital, 8000 Aarhus, Denmark.
http://www.ncbi.nlm.nih.gov/pubmed/20403500

[5] EURASMUS
The multidisciplinary European Research Association for Somatisation andMedically Unexplained Symptoms (EURASMUS) was formed to study the genetic,psychological and physiological mechanisms underlying bodily distress.Co-convenors: Francis Creed, Peter Henningsen http://eurasmus.net/

Suzy Chapman

- Suzy Chapman

42. August 8, 2011 1:41 PM EDT 

Yes, Suzy, this is the book. The index suggests that "cfs" will be its primary focus. It's not such a terrible development if one thinks of it in its future role as a resource for medical historians interested in documenting the disordered thinking of the era.

- Hillary Johnson

43. August 10, 2011 2:35 AM EDT 

Hillary this piece was simply brilliant. I shared the link with all the contacts I could think of. Them journalists in UK are writing blindly. They need some enlightening about what is really going on and you have done just that. Thank you!

- K

44. August 24, 2011 1:47 PM EDT 

This sounds to me like an extension of the UNUM funded CPDR and UNUM's plan to "re-educate doctors"/"significant reorientation" about "psychosomatic illness" and "rehabilitation"by 2012:

Centre for Psychosocial & Disability Research
Launched in July 2004, the Centre offers unique opportunities for extending knowledge and understanding of the psychosocial, economic, and cultural factors that influence health, illness, disease and recovery; with a particular focus on enablement, rehabilitation and reintegration into rewarding work. At a time when public trust in medicine and science is undoubtedly diminishing, the Centre’s pursuit of gaining a better understanding of patients’ and society’s beliefs regarding illness and work has been given priority. 
The work of the Centre aims to bring about a significant re-orientation in current healthcare and occupational practices in the UK so that enablement and integration, rather than traditional chronic illness management, will be the positive focus and goal for all those involved in providing treatment, care and support for people with disabilities.

http://medicine.cf.ac.uk/departments/primary-care-public-health/research/cpdr/

- oerganix

45. August 26, 2011 12:36 AM EDT 

Great post! Thank you, Hillary.

- Justin Reilly

46. September 6, 2011 10:45 AM EDT 

Medco is my insurance company. They are no longer allowing me to get my antiviral. They have ignored Dr. Montoya both in his letter and his attempt to speak to anyone on the Phone. What do I do now:

- Joyce Schneider

47. September 7, 2011 11:35 AM EDT 

I’m very late to the pity party; I’ve missed your great articles, Hillary. Accompanying the articles in the British press was a photo of sw, smirking up into the camera. He knows EXACTLY what he is doing...

- moineau

48. October 21, 2011 6:48 AM EDT 

Wessly should be criminally charged with abuse, torture, etc.and stand trial for his crimes. Neuro-immune illnesses are exactly a 21st century witch trial for those afflicted with this illness. Wessly should beheld accountable for the mass torture he has inflicted.

-The Abused

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