Evil deeds and common ground

The media is continuing to churn out articles about how a few beleaguered psychiatrists have received death threats from patients with myalgic encephalomyelitis. The psychiatrists, who claim they can treat ME with talk therapy and exercise, say these patients are angered by any assertion that their disease is psychological.

In response, Dr. Malcolm Hooper has written a letter offering more backstory and a reality check. It begins:

No right-minded person condones any campaign of vilification against psychiatrists but equally, no right-minded person can condone what psychiatrists like Wessely have done to the UK ME community over the last 25 years.

There's a lot of good stuff in that letter. Stuff about how ME—a neurological illness that attacks the immune system and leaves many sufferers completely incapacitated—is not in any way psychological. But the thing that stands out to me is that first sentence. Before he goes on the attack, he states in no uncertain terms that death threats are bad.

That's been the response I've seen everywhere in the ME blogosphere. While most patients and advocates suspect that these psychiatrists are exaggerating their claims, everyone has taken care to say that IF the threats are happening, they shouldn't be.

* * *

In related news, the public was recently treated to a first-person account by Simon Wessely, a primary target of the alleged death threats. I could spend several pages debating his main arguments, but I'll set them aside for now and focus on this statement:

Our critics have devoted much energy (irony intended) to denouncing us as pawns of the drug or insurance industries. I have been called a new Dr Mengele, the next Dr Shipman ... I am frequently accused of having thrown a CFS-suffering child into water to see if he would sink or swim.

Ah yes. The kid in the pool.

Dr. Wessely is referring to Ean Proctor. At age 12, Ean was taken from his parents and placed in an institution. Those responsible for his care believed his symptoms of near paralysis weren't real. To prove it, they threw him facedown into the deep end of a swimming pool. Their experiment failed, and they had to rescue him when he couldn't move his limbs to save himself.

Wessely almost certainly didn't pick up Ean Proctor with his own hands and toss him into the water. I've never seen anybody accuse him of doing so. What he is accused of—what is a matter of record—is his involvement in Ean's case. As a senior registrar in psychiatry, he declared Ean's disease to be psychological and recommended that the boy be removed from his family.

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The "death threats" story, presented unquestioningly in article after article, has become a source of frustration for ME patients and advocates. As one sufferer noted in a comment to my last post on the subject,

The truth of the situation is that even if death threats have been sent, it is by a tiny minority of the hundreds of thousands of people with ME in this country - yet it's the whole community who is being attacked here. And of course, the whole story just increases people's belief that we're somehow psychologically unbalanced.

Which leads to an interesting question: How would psychiatrists react if the tables were turned?

ME advocates can cite a number of cases where children and adults with ME were forced into institutions for believing they were sick. Do all therapists think this is appropriate or helpful? Hopefully not. But what if a series of articles were published describing what happened to Ean Proctor, Sophia Mirza, Brian Nicholson, Ryan Baldwin, the child from Spain, and others in gory detail? What if these articles referred to "psychiatrists" who pushed for such measures without mentioning any of them by name?

Psychiatrists who do not agree with such measures might feel unfairly singled out.

* * *

In a 1994 lecture, Simon Wessely said, "I will argue that ME is simply a belief, the belief that one has an illness called ME." He and others in the "Wessely School" have since backed off of that proposition, arguing instead that ME is a genuine, serious disease with a psychological component.

The ME community still disagrees with this watered-down version of the psychiatric perspective. That said, the watering down has significant real-world implications. If ME is fully psychological, then you can make an argument for institutionalizing people whose "illness beliefs" have rendered them completely dysfunctional. If ME is a real disease with psychological factors thrown in, then forcing patients into a psych ward because they believe they have a real disease doesn't make a lot of sense.

So here's my proposal.

ME advocates will publicly oppose death threats, harassment, and abuse, as we have done from the beginning.

In return, psychiatrists will publicly oppose the involuntary commitment of ME patients into psychiatric units.

What do you think, psychiatrists? Do we have a deal?

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.