Sunday, August 28, 2011

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.


DeppityBob said...

WOW. Powerfully good. Some of your best writing yet, reading like it came from a pro journalist. You illustrated the point sympathetically without histrionics or drama, just good reporting. I suggest you submit this to Newsweek for one of their "Your Turn" (IIRC) pages. It's that good and that engrossing. I wonder if maybe you missed your calling and should be in advocacy journalism. I am impressed.

DeppityBob said...

I suggest a follow-up article, one of serious reportage: covering the negative psychological effects on ME/CFS sufferers as a result of maltreatment. Feelings of shame, guilt, inadequacy, frustration...all parts of having an "invisible illness." You could seriously turn this into a major project, one the rest of the country should know about--especially given the likely XMRV connection.

karen cho said...

Agree with DeppityBob

MOS said...


Anonymous said...

Brilliant article and really well written. Thanks for this.

Wanda Lozinska said...

Very well said!! Is there any chance this can be published in the National papers which printed Wessley's pathetic claims?

Sarah-Louise said...

I love this article! I've had m.e for eleven years and have been very severe for nine. If only more people would speak up truthfully like this, it could change lives! I couldnt help giggling at the "swarm of killer bees"! poor old wessely-he'll never be a decent human being! I just wish his reign was over!

Susannah said...
This comment has been removed by the author.
Susannah said...

This is a really well written article that explains the situation well! As others have said, it would be worth seeing if it could be published by one of the British newspapers that have been so avidly reporting on the Death Threats story.

I've been getting really naffed off and quite upset with this recent outpouring of hatred for the ME community - particularly because it seems like such a well targeted, clever attack.

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.

I've been ill for 15 years with ME - the last 8 have been extremely severe - housebound, more often than not bedbound. Several of those years I was so severely ill that I was experiencing bouts of complete paralysis. Yet in that whole time, my mental health has been fairly well adjusted! I had a couple of years where I was on antidepressants, around 9 years ago - but it wasn't related to my illness, rather, an abusive relationship that I had found myself in. I actually think that people who cope with such long periods of such severe illness have to fight so hard just to survive, that their mental health has to be pretty strong to cope with it all!!

Laughably, I believe I am on the receiving end of more stigma as an ME sufferer than I would ever have to endure as someone with a psychological illness - so that theory, put forward by the psychiatrists as a reason why we don't want to admit that our illness is all in our heads, is completely unfounded.

Thank you for advocating for us so succinctly! (And apologies if this reply is a little bit garbled - I'm struggling to keep my brain focused tonight, lol) :)