Putting the mass in mass hysteria

If you've been following medical news over the past few months, you may have heard about some goings on in a little town called Le Roy. Over 20 high school girls from Le Roy High School have developed Tourette-like tics. The symptoms are severe enough that afflicted students have dropped out of school.

After the New York State Health Department failed to identify any known toxins or infections, a neurologist from the area gave his verdict. From the New York Times:

...it was conversion disorder, he said, which meant the girls were subconsciously converting stress into physical symptoms. And because so many students were afflicted with similar symptoms, it was also considered to be mass psychogenic illness, which is another way of saying mass hysteria.

More recently, neurologist Rosario Trifiletti saw some of the patients and put forth a different theory:

... the girls were suffering from an illness similar to Pandas (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus), a disease in which the immune system alters the neurochemistry of young people suffering from strep infection ... [A] week later, after examining the girls, Trifiletti revealed on “Dr. Drew” that all nine of the girls he tested showed evidence of either strep exposure or exposure to the organism associated with pneumonia.

Dr. Trifiletti's patients have shown dramatic signs of improvement on antibiotics. That proves their illness is physical instead of psychological, right? Not according to skeptics of the PANDAS diagnosis; they say the antibiotics are only working as a placebo.

So who's right?

A few TV clips provide clues. Back in January, before Dr. Trifiletti arrived on the scene, the Today Show ran a couple of segments about Le Roy, interviewing some of the afflicted girls and their parents. There was a lot of footage showing the tics themselves, giving viewers a better idea of what it would be like to live with them.

Segments are here. The first tics begin at 0:22.

* * *

Did you watch?

So did a whole lot of other people. If what's happened to these girls is purely psychological, having nothing to do with area-specific toxins or infections, why hasn't the "mass hysteria" spread across the whole country?

Are there no stressed-out, impressionable teenage girls outside of Le Roy?

By what definition?

Exciting development for people who have myalgic encephalomyelitis, known to most of the world as "chronic fatigue syndrome." The Journal of Internal Medicine has published Myalgic Encephalomyelitis: International Consensus Criteria, which lays out a new case definition for the disease ...

Wait ... where are you going?

* * *

If you are not an ME sufferer, caregiver, or advocate, you're probably about to bail. The topic sounds dry and boring. It doesn't affect you directly. There are other things you'd rather do with your time.

Please bear with me. There's a reason you should know about this, and I'll try to make it as un-boring as possible.

Here goes ...

* * *

What's the International Consensus Criteria?

A set of criteria that physicians can use to diagnose myalgic encephalomyelitis.

I'm already bored.

It gets better. Humor me, OK?

Oh, all right. But what's the big deal? They couldn't diagnose ME before?

Not very well. Over the past few decades, several case definitions have proliferated. The worst ones are little more than a wastebasket diagnosis. Essentially, "If you're really really fatigued for at least six months and you've ruled out every other disease we can think of that might cause this, then maybe you have it."

The ICC is much more specific. For instance, to be diagnosed, you must have post-exertional neuroimmune exhaustion, which is a fancy way of saying that you can't exert yourself without causing yourself even more pain and making your symptoms worse. Other diseases that cause fatigue (there are many) don't have that feature.

If you feel like learning about the details, go here. If not, just know that the ICC is much better at distinguishing ME from conditions that are not ME.

No offense, but explain to me again why I'm supposed to care about this? I don't have ME.

Do you like being manipulated? Lied to?

Eh? No ...

OK. If you read the news, you may occasionally encounter a story about how a particular kind of talk therapy (cognitive behavioral therapy) and a particular exercise program (graded exercise therapy) can help people with "chronic fatigue syndrome." Some brand new study proves it! Yay!

What's the problem with that? And what does it have to do with the ICC?

The case definition used in the study makes or breaks the study's validity. The bad ones, as mentioned above, are too broad. Subjects who meet the criteria for a bogus definition may not have ME at all. Maybe they have a different disease. Or maybe they have depression, which can be helped by talk therapy and exercise.

To complicate matters further, subjects who actually have ME are more likely to drop out of the study or not participate at all. Remember the bit about post-exertional neuroimmune exhaustion? Exercise is dangerous for people who have it. If they push too hard, they can hurt themselves—sometimes permanently.

So with the ICC in place, these psychological researchers will realize they've been studying the wrong people? They'll start studying the right people?

Eh, probably not. Other ME scientists have been bringing up the sampling bias problem for years, and the psychological researchers have soundly ignored them.

Oh. What about the media, then? Will journalists call bad scientists on bad science because of the ICC?

Based on what's happened before, also doubtful. Most reporters won't know the ICC exists.

I can see why you'd find that annoying. But to be honest with you, I have my own problems right now. Bigger problems than exposure to shoddy journalism. How does any of this affect me?

Do you consider yourself a good person? A fair person?

See, the issue with these stories is that they imply something about the disease and the people who have it. If sufferers get better with a little talk therapy and exercise, then ME can't be that big of a deal, right? And when you hear about people who go on disability because of "chronic fatigue syndrome," you think they must be getting away with something. How dare they take taxpayer money when all they need to do is see a shrink and do some sit-ups?

When these news stories convince you that ME isn't a big deal, they turn you against your fellow human beings. They succeed in stealing your compassion.

That kind of sucks, when you put it that way.

It does. But now that you know ME means a lot more than "tired all the time"—and that it responds badly to exercise—you can't be played by a press release.

At some point, another story will be published about how talk therapy and exercise help people with ME. When you see it, you can ask, "By what definition of ME?"

Mass hysteria?

Over a thousand people have become sick while working in Cambodian shoe and garment factories. Stricken employees report dizziness, nausea, exhaustion, and shortness of breath; hundreds have required brief hospitalization.

With no concrete explanation for the symptoms, a few people with an interest in such things have leapt to the obvious conclusion:

It's been almost 50 years since girls at a boarding school in Tanganyika (now Tanzania) were struck by an illness whose symptoms — fainting, nausea and helpless laughter — soon spread to other communities. Or consider the Pokémon contagion in 1997, when 12,000 Japanese children experienced fits, nausea and shortness of breath after watching a television cartoon. Sufferers of World Trade Center syndrome, meanwhile, blamed proximity to Ground Zero for coughs and other respiratory problems long after airborne contaminants posed any health threat.

All these are examples of mass hysteria, a bizarre yet surprisingly common phenomenon that is increasingly recognized as a significant health and social problem. For centuries it has crossed cultures and religions, taking on different forms to keep pace with popular obsessions and fears. In our post-9/11 world, it thrives on the anxiety caused by terrorist attacks, nuclear radiation and environmental gloom.

More ...

It's an interesting theory. Far more interesting than the symptoms turning out to be real. Time won't sell any magazines with headlines like "Toxins are Toxic" or "Flu Virus Gives People Flu."

The problem is, hysteria doesn't have any real evidence behind it. Failing to discover a virus or toxin that's making people sick doesn't mean the virus or toxin doesn't exist. It may simply mean we haven't found it yet. Think how many people died of AIDS before anybody knew what HIV was.

Is hysteria a real thing? Do we have any way of finding out?


Here's my challenge to any researcher who backs the mass hysteria hypothesis:

Test it.

This should be relatively easy if you have access to facilities, grant money, and cheap graduate student labor. Bring subjects into an experiment that's ostensibly about something else. While everyone is answering survey questions on an unrelated topic, have numerous confederates (people pretending to be subjects, but who are in on the experiment) fake some kind of medical issue. Seizures, maybe, or fainting.

Then see if the one real subject in the room starts feeling and mimicking the "symptoms."

It took me five seconds to think up this experiment, and I'm not even a psychologist.

I hope some enterprising mental health professional takes up the challenge, because this isn't just a matter of scientific curiosity. Ask people with myalgic encephalomyelitis. When there was an outbreak of the disease in Incline Village, Nevada, back in 1984, the CDC declared it to be mass hysteria despite evidence of neurological problems. 27 years later, the victims haven't recovered ... and most of the scant funding that exists for their disease goes to psychological research.

If patients have to prove that their illnesses are real, then the scientific community should have to prove that mass hysteria is real. It's only fair.

Death threats

If you've been following the news lately, you may have come across a story or two about a small group of psychiatrists who study myalgic encephalomyelitis, aka "chronic fatigue syndrome." The psychiatrists in question say they've received death threats from ME patients ... the very people they're trying to help! Gasp!

The reason for the threats, they claim, is that patients with ME—a disease that causes chronic pain, debilitating exhaustion, and worsening of symptoms after even minimal exertion—are opposed to research that implies their illness could be linked to psychological problems.

"I have moved my research interests to studies of Gulf war syndrome and other conditions linked to war zones," says Simon Wessely, one of the more famous (or infamous) ME psychiatrists. "That has taken me to Iraq and Afghanistan where quite frankly I feel a lot safer – and I don't mean that as a joke."

He argues that the threats are potentially as damaging to medical research as attacks made by animal rights activists.

The ME community has responded by collectively rolling its eyes.

Digging a bit deeper

Before you jump to any conclusions, rest assured that ME patients and advocates do NOT believe that death threats are a legitimate means of activism or self-expression. There's a lot of anger, yes, but assassination attempts are not on the table.

So why aren't they taking the threats seriously?

First of all, there's more than a little skepticism that the threats exist. From Hillary Johnson, author of Osler's Web:

In a BBC radio interview, [Wessely] also reportedly told a reporter that he and his mates have started taking precautions that animal researchers in their institution employ ... 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?

From Phoebe Snowden, a journalist whose career ended due to ME, in response to a brief on the subject from Times Higher Education:

I am horrified by your standards of journalism. Where is the evidence that any of these "threats" exist, and why are you people reporting this ludicrous story without questioning its validity?

Here's Angela Kennedy, a social sciences researcher and parent of someone with ME, poking one of the biggest holes in the story's credibility:

In 2007 I was once falsely accused of 'personally harassing' Professor Wessely by a Wikipedia administrator, claiming Professor Wessely had told him this himself. I publicly oppose and critique psychogenic explanations for ME/CFS, on both a political and academic level. I have NEVER harassed Professor Wessely or contacted him ... When I wrote to Professor Wessely's employers, asking that he clarify he had no part in the false claims made on Wikipedia in 2007, they refused to provide that clarification.

So, there's that.

Mind you, I have no trouble believing that there's been hate mail. A researcher quoted in The Guardian described a plausible example:

"I published a study which these extremists did not like and was subjected to a staggering volley of horrible abuse," said Professor Myra McClure, head of infectious diseases at Imperial College London. "One man wrote he was having pleasure imagining that he was watching me drown. He sent that every day for months."

Again, the ME community doesn't advocate harassment. But I'd guess that most would understand where the letter writer's anger comes from. That's because they understand the consequences of the psychiatric perspective.

For instance ...

In 1988, 12-year-old Ean Proctor had been sick for two years with ME, deteriorating to the point where he could no longer walk or speak. Simon Wessely (at the time a senior registrar in psychiatry, not yet famous enough to be getting death threats) made the case that Ean's symptoms were psychiatric, and that he needed to be removed from his home so he could escape the influence of his "overinvolved" parents.

They removed him, stuck him in a psychiatric ward, and severely restricted contact with his family. Treatment included not taking him to the bathroom so he'd be forced to go there unassisted. (Didn't work. He wet himself and sat for hours in soiled clothes.) Treatment also involved pushing Ean in his wheelchair very fast, then stopping abruptly to make him do something to prevent falling out. (Didn't work. He toppled onto the floor.)

And then there was this:

... the sick child was forcibly thrown into a hospital swimming pool with no floating aids because psychiatrists wanted to prove that he could use his limbs and that he would be forced to do so to save himself from drowning. He could not save himself and sank to the bottom of the pool.

On the bright side, they fished him out before he died. But the incident might explain that letter writer's oddly specific fantasy—why he imagined watching McClure drown instead of, say, being attacked by a swarm of killer bees.

And again

You may be thinking that what happened to Ean was an isolated incident. It's not.

In 2003, an ME sufferer named Sophia Mirza was sectioned in Britain—police broke down the door and took her to a psychiatric hospital. Two years later, she died from complications of the disease. Though Mirza only spent 13 days in the hospital, her mother has gone on record saying that the ordeal had a devastating effect on her already fragile condition. She had actually been improving until that point.

Just three weeks ago, a 12-year-old girl in Spain was taken by police to a local psychiatric ward. Although she's been diagnosed with severe ME by specialists, Social Services thought she should be attending school. They're forbidding the girl's mother (who also has ME) from seeing her.

Don't assume this kind of thing can't happen here. It has happened here.

Death threats

Most ME sufferers don't experience an involuntary trip to the pysch ward. Unfortunately, they also don't receive useful treatments. The lion's share of funding for ME goes to psychological research promoted by the aforementioned psychiatrists; as a result, the best many patients can get is cognitive behavioral therapy and graded exercise therapy. While this form of psychological intervention isn't quite as bad for desperately sick people as throwing them facedown into the deep end of a swimming pool, studies show it does more harm than good.

With no treatments that address the biological roots of their disease, ME sufferers tend to die earlier.

And then there are the extreme cases. Given what happened to Sophia Mirza, that kid in Spain has good reason to fear for her life.

On the flip side, not one psychiatrist has died at the hands of an ME patient.

Maybe the media is chasing the wrong story.

Secondary gains

I had a good friend in college. Call her Liz.

Liz was an artistic type, very bright, with a flair for the dramatic. She made no secret of her emotional state, whatever it happened to be at the time. Happy events made her bounce off the walls with joy. Setbacks were cause for much handwringing and gnashing of teeth.

At some point during our freshman year, Liz developed an odd health problem. I don't remember all the details, but one of the symptoms involved numbness down one side of her body. Understandably concerned, she went to see a doctor.

After her appointment she reported the doctor's diagnosis: her symptoms were psychosomatic. She seemed content with this explanation. I accepted it as well, and life continued on as normal.

Fast-forward a month or so. My high school friend Larry visited, and he and Liz were hanging out in my dorm room. Liz made some mention of physical discomfort. Larry offered her a backrub. She said yes, and Larry went to work. After about a minute, Liz cheerfully informed him that she couldn't feel anything he was doing. Larry kneaded harder. No dice.

Later, after Liz had left the room, Larry turned to me, baffled.

"I should have been hurting her," he said.

For the first time, I gave some actual thought to Liz's diagnosis. I had a solid layman's understanding of what psychosomatic disorders were. I knew that the symptoms, though caused by emotional disturbances, were supposed to feel real—that the patients weren't faking. Still ... If Liz's "psychosomatic" numbness was so real that my big, very strong friend couldn't penetrate it, what did psychosomatic mean?

* * *

Lily Cooper recently wrote a very interesting article about the history of psychosomatic illnesses, aka somatoform disorders, aka conversion disorders, aka hysteria. If you have ever given credence to the idea that emotions can manifest as physical symptoms, give it a read. A couple of choice excerpts:

The idea that physical illnesses were manifestations of feelings and thoughts started with Charcot in the 1880's ... For instance, a man knocked unconscious for 5 days by a carriage was unable to speak, walk or remember the accident when he regained consciousness. Charcot diagnosed him as being hysterical because of the psychological trauma of the event.

and ...

After brain scans of patients suffering from chronic fatigue syndrome were shown to an expert scan reader in 1984, he said the punctate lesions he saw looked like the scans of AIDS patients. Months later the CDC issued its verdict. The town of Incline Village NV [where the epidemic had occurred] was suffering from mass hysteria.

From multiple sclerosis (once dismissed as "hysterical paralysis") to myalgic encephalomyelitis (still derisively referred to as "chronic fatigue syndrome"), the psychologizing of biomedical diseases has a long, if not exactly proud history. The question is why. In the absence of a mechanism—an explanation for how people can think themselves sick—where is the evidence?

* * *

Mental health professionals who believe psychosomatic illnesses exist make the case that patients benefit from secondary gains. Here's a rundown from Wendy Beall, who titles herself "Change Meister":

When you call in sick to work and escape the whole onerous day without being accused of deliberately shirking your duties, you are enjoying a secondary gain of illness ... When someone waits on you tenderly and takes care of all the chores as you languish in bed, you are enjoying a secondary gain. When a child escapes a day at school by claiming a stomachache or sore throat, this is a secondary gain—and often escalates to blatant manipulation when paired with an overly protective parent.

... if you are not getting well despite attempts to heal, you ought to consider how your symptoms benefit you. Remember, we all use illness to get what we believe we can't get comfortably by direct means.

So apparently if you have unexplained symptoms and benefit from them in any way, shape, or form, the conclusion is inescapable. Your disease must be all in your head.

How scientific.

* * *

Patients with psychologized chronic illnesses will tell you that the advantages of being sick are highly overrated. They miss their careers. They miss the financial stability work gave them. Rather than attracting sympathy, they discover that most of their friends disbelieve and disappear. This suggests that if we are to accept secondary gains as indirect evidence, we should consider the other side as well. What are the secondary gains of assigning a psychological diagnosis to a biomedical disease?

If patients are to blame for their own suffering ...

• We don't have to feel sorry for them. We can give a knowing smile and say they need to get over themselves. Self-righteous indignation and condescending pity are far less distressing than compassion.
  
  
• We don't have to entertain notions of an unjust universe, or be angry that sometimes bad things happen to good people.
  
  
• Physicians who can't immediately identify a disease don't have to admit it. Instead they can tell their patients it doesn't really exist.
  
  
• Insurance companies that don't cover mental illnesses can deny claims.
  

* * *

Why did I so readily accept my friend Liz's diagnosis all those years ago? As I mentioned, Liz was artistic, highly emotional, and dramatic. She had the requisite troubled childhood. On some level I'd assumed that Liz was the kind of person who would get a psychosomatic illness. The explanation made sense, and things that made sense made me happy.

Only years later did it occur to me to wonder. How long did Liz sit in that doctor's office before he made his assessment? Did he put any real time and effort into exploring other possibilities?

Or did it simply make his job easier to assume she was the type?

ME/CFS and the perils of ignorance, part II: When the authorities get involved

People with ME/CFS, fibromyalgia, chronic lyme, MCS, and other invisible illnesses tend to accumulate bad experiences with the medical establishment. Some doctors will tell them there's nothing wrong -- the symptoms are all in their head. Less forthright doctors will give them a placebo and send them on their way.

That sick people have to endure this kind of casual dismissal is bad enough. But the consequences of medical prejudice can be much, much scarier.

Here are a couple of recent examples.

Brian Nicholson

Brian Nicholson, who lives in the UK, has ME/CFS and postural orthostatic tachycardia syndrome (POTS). He has been involuntarily committed to a mental hospital for "abnormal illness beliefs in relation to ME."

According to Simon Overton, who maintains a Facebook page about this, Nicholson was drinking a lot of water in an attempt to treat his POTS. Though he was monitoring his fluid intake/output and his sodium levels, those who committed him claim his water intake was excessive, and that he is a danger to himself.

Overton says he had been doing well back when he was on IV saline -- and not drinking too much water when he was on it.

You can read more about Nicholson here.

Ryan Baldwin

16-year-old Ryan Baldwin has ME/CFS, in addition to severe autonomic dysfunction, a progressive heart conduction system block (LBBB) with right axis deviation, and mitochondrial disease. The Department of Social Services in North Carolina removed him from his home, accusing his parents of "fictitious disorder by proxy."

Apparently the diagnoses Ryan received from Johns Hopkins, the Mayo Clinic, and other institutions didn't impress them much.

Ryan has been in foster care for four months. He isn't allowed to use his power wheelchair.

You can read more about Ryan Baldwin here and here and here.

ME/CFS and the perils of ignorance, part I: A trip to the emergency room

Think living with a debilitating, incurable disease is tough? Try living with a debilitating, incurable disease while dealing with people who don't believe you have one.

Myalgic encephalomyelitis, aka ME/CFS, causes considerable pain, post-exertional malaise, cognitive impairment, and crushing exhaustion that is not relieved by rest. Despite solid scientific evidence that this is a physiological condition, many continue to believe that it's hypochondria, a psychosomatic disorder, or just plain laziness.

A typical example: Someone I know with ME/CFS -- the guy who inspired my lyrics for Everybody Knows About Me -- developed a lung infection. After attempting to deal with it on his own for a few weeks, he called his doctor's office. They told him (rather forcefully) to haul ass to the emergency room.

Here's what happened, in his own words:

I went to the emergency room for a potentially quite serious bacterial infection. During intake, when they asked me to tell them what major diseases I had, I made the error of including "myalgic encephalomyelitis." I did so because it is a (possible) explanation for (some of) various health issues.

Many hours of waiting¹ later, it turned out that the doctor had never heard of the disease, and had looked it up on emedicine.com.

Those of you who have ME will be familiar with the results.

The slightly suppressed smirk and the leaning-to-one-side posture that says, "I should really be doing important things, but this is slightly amusing, so I will waste a few minutes here before getting back to doing them." Upon being told that one is essentially bedbound on every day except for emergencies, the accusation of "you were able to make it here with no problem, weren't you? [So therefore you can go anywhere you need to anytime]" The visible show of patience while refusing to take strong suggestions of a staph aureus infection seriously. The suggestion that it might be a cold. And of course the "you look fine."

The self-criticism for making the mistakes one makes, due to the fog, to the toxic environment, to being vertical for that long for the first time in more than a year. Mistakes like forgetting to point out stupid defensive facts like "I had to take stimulants to be here and my body will be paying for this." Yet knowing that they still would not believe.

The self-criticism for mentioning the disease.² The well-founded concern that the permanent computer record will now poison future emergency room visits. The futile, desperate wondering whether it's possible to expunge that stigma after the fact, now that it has been proven how prejudiced people can be.

The wondering what to do about the infection now.

And, above all, the well-founded concern that the X-rays, taken at great personal and financial cost, received no more than a cursory glance.³

A cursory glance.

[1] Often with no place to lie down provided. This is extremely difficult for somebody who can realistically be vertical only for the length of time it takes to go to the bathroom. If you were an unrealistic idealist, you might harbor the ridiculous notion that a hospital would understand this.

[2] If they have not heard of it, knowing it won't help them treat you. If they have heard of it, they have heard harmful misinformation. Nearly zero chance of the information being used wisely to heal you.

[3] This doctor casually told us a story about how those in his sub-field often just (metaphorically) kick positive X-ray/CT/MRI results "under the table" if they are not relevant to what they are asked to report on. It was clear that this was his own attitude.

* * *

Me again.

Those of you who have never dealt with unbelieving medical staff might be skeptical. "Maybe he saw what he expected to see," I hear you cry.

I was there. I took a vacation day to drive him to the hospital and stay with him while he talked to various medical professionals, including the doctor he spoke of. He didn't imagine it.

The doctor wasn't mean. He didn't come right out and proclaim ME/CFS was psychological. He didn't point and laugh. But his body language had changed. His tone suggested ... not a sneer, exactly, but a "you can't put anything over on me" cockiness.

Oh, and he said that sending us to the emergency room was an "abuse of the system."

Sadly, this was a typical ER visit for someone with ME/CFS, fibromyalgia, or other invisible illness. Even more sadly, it was a trip to Disneyland compared to what some sufferers face. Next up: ME/CFS and the perils of ignorance, part II: When the authorities get involved.

Bias in the New Scientist

Last month, the New Scientist published an interview with psychiatrist Simon Wessely. Wessely has made a name for himself promoting the view that people with ME/CFS -- as well as Gulf War syndrome, fibromyalgia, and irritable bowel syndrome -- are just thinking themselves sick.

In his own words:

Often there is an organic trigger like glandular fever. That's the start, and usually most people get over it, albeit after some weeks or months. But others can get trapped in vicious circles of monitoring their symptoms, restricting their activities beyond what is necessary and getting frustrated or demoralised. This causes more symptoms, more concerns and more physical changes, so much so that what started it all off is no longer what is keeping it going.

You can read the whole article here. The telling bit is not so much in anything it says, but in what it doesn't say:

1. Though Wessely states that there's no organic cause beyond the "infective trigger," he provides no evidence to back up his claim.
   
   
2. Wessely fails to mention the mountain of evidence that ME/CFS is a biological disease.

And then it gets interesting.

Following the Web version of this article are, at this writing, 562 comments. The thread began on March 15 and it's still going. The vast majority of commenters vehemently disagree with everything Wessely said. If you don't have the hour or two it would take to carefully read all the comments, here's a sampling.

From Michael Tomlinson, in response to Wessely's assertion that severely affected ME/CFS sufferers need to exercise:

Most of us have tried anything they could. We've tried exercising, physio, chiro, massage, weird diets, acupuncture... you name it! ... All exercise did for me was add to the number of limbs that are inflamed; and this was carefully supervised by a fully trained personal trainer. I had to stop after 18 months or I wouldn't be able to use my arms at all! ...

I was incredibly fit before - I rowed in the head of the river, did competitive downhill skiing, rock climbing at a high level, bike riding, swimming, and more. I can no longer do any of those activities. Can you really understand how horrible it is to be unable to do those things? That's why I'm depressed! It's NOT the other way around.

From Balbuie, challenging New Scientist to interview biomedical scientists about the disease:

I could suggest scientists like Dr Judy A. Mikovits, Director of Research at the Whittemore Peterson Institute for Immune Disease in Universtiy of Nevada, Reno. Here is some of WPI's latest work:

Cytokine Volume 43, Issue 3 September 2008, page 245, Special Issue, Abstracts and Reviews

"Our analysis has revealed distinct pathogen associated signatures with significant 5-200 - fold differences between patients and controls for the inflammatory cytokines Il-8, IP-10, MIP-a and MIP-1b, as well as the procytokines IL-6, TNFa and Il-1b ..."

And also Dr Jonathan Kerr, Sir Joseph Hotung Clinical Senior Lecturer in Inflammation, St George's University of London who has published several groundbreaking papers on gene expression in ME/CFS.

So here's where I'm confused: Why is New Scientist presenting the Wessely angle exclusively? As the above commenter noted, they could have found any number of scientists who would have been happy to provide an alternate view.

If they couldn't be bothered to procure quotes from other scientists, how about a few probing questions for their subject? For instance, how does Wessely respond to the biomedical research demonstrating that the disease is organic? Or, if we know that there are legitimate serious chronic illnesses -- multiple sclerosis, for example -- what makes ME/CFS different?

Who knows. Maybe New Scientist just figured that stories about how people's own minds make them sick are sexier than stories about pathogens and inflammatory cytokines. But standing by their flimsy, biased work after getting hammered by their readership for a solid month? It doesn't make sense.

So what now? Will it help for us to add to the still-growing list of comments? To contact an organization like MediaWatch and try to get them to nudge the journal into doing the right thing?

Your suggestions are welcome.