Tuesday, January 12, 2010

Failure to detect false illness beliefs

Well, this is interesting.

If you've been following the news about ME/CFS, you'll already know all about the latest storm that's been brewing. If not, here's a brief summary.

Back in October, the Whittemore Peterson Institute discovered a link between a retrovirus called XMRV and ME/CFS: 67 percent of the patients sampled tested positive for XMRV, as compared to 4 percent of the healthy controls. The WPI paper was published in Science.

Last week, a group of researchers at Imperial College London published "Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome" online. They claim they were unable to replicate the WPI's findings.

The WPI stands by its results. In an official statement, they list various reasons why they believe the new Erlwein et al. study is useless. One is the difference in the patient populations.
Significant and critical questions remain as to the status of patient samples used in the UK study as those samples may have been confused with fatigued psychiatric patients, since the UK has relegated “CFS” patients to psychiatric care and not traditional medical practices.
Nothing too surprising here. One of the paper's authors is Simon Wessely, who believes that people with ME/CFS (and fibromyalgia, and Gulf War syndrome) have "false illness beliefs." Here's a quote from an interview he did with New Scientist
Such symptoms only become a problem when people get trapped in excessively narrow explanations for illness - when they exclude any broader consideration of the many reasons why we feel the way we do.
But today he and a couple of coauthors posted a rebuttal to the WPI's dismissal of the new results. Here are the bits that interest me:
We follow the same psychiatric exclusion criteria as mandated by the Fukuda criteria. We do this on the basis of semi structured interviews and assessment that we have also published. In addition, we also exclude patients with chronic somatisation disorder as defined by DSM-IV, which is not required by the Fukuda criteria, but most experts and clinicians agree are a different population.
and ...
patients in our service have also co operated in studies of PET and fMRI neuroimaging, autonomic dysfunction, neurochemistry, respiratory function, vitamin status, anti nuclear antibodies, immune function, neuroendocrine function and genetics (see references). Hence it is untrue to state that patients at King’s for example do not show alterations in immune function – in fact they do - see Skowera et al, High levels of type 2 cytokine-producing cells in chronic fatigue syndrome." Clinical and Experimental Immunology 2004: 135: 294-302. Similarly, many of our patients also show altered neuroendocrine, neurochemical and other biological parameters, and we have published many examples of these (see references below). It is therefore simply untrue that we either seek to find no biological changes in CFS, or fail to report those that we do find.
So, people only have ME/CFS because they think they do. But our patient population is legitimate, because look how sick they are!


Jannie Funster said...

"relegated “CFS” patients to psychiatric care and not traditional medical practices." That's too bad, much more needs to be done.

wyvernfree said...

"So, people only have ME/CFS because they think they do. But our patient population is legitimate, because look how sick they are!"

Hmm. I don't know if that's actually so contradictory coming from a psychiatrist. He probably deals with people on a daily basis whose illnesses are both extremely severe and all in their heads.

For Wessely to characterize ME/CFS as a mental illness may be 100% WRONG, but I doubt it's DISMISSIVE. Psychologists/psychiatrists may be the only group in the country to take the suffering of mentally ill people seriously. Just because he believes it's psychological doesn't necessarily mean he believes that it's not serious, not painful, not debilitating, not 'real,' etc. There are known psychological illnesses that are intensely painful and debilitating.

I find it doubly sad that the American stigma against mental illness is hurting sufferers of ME/CFS just because some people think it MIGHT be a mental illness. It's like when thugs beat up a straight guy because he 'looks gay' and his first reaction is 'But I'm not gay!' Ok, but even if he *was*, he still shouldn't be beaten up for it. And even if ME/CFS *were* a mental illness, doctors should still take it seriously. If that makes any sense.

I feel really bad for the people who actually do suffer from hypochondria. It's a painful and stressful condition as far as I've heard, but try getting ANYONE to take THAT seriously. :/

DeppityBob said...

But wyvernfree, that's exactly the problem. Defining the illness as psychological allows some (biased) health care workers, and the lay public, to blame the victim for their own problems and assert that all they need is an attitude adjustment. Not only that, but the constellation of symptoms that make up CFS/ME/fibromyalgia are too consistent and pronounced to all be psychological. One could accept a few people who are hypochondriacally sick, but many thousands with the same symptoms and the same painful pressure points is far too coincidental. The answer is not to give up and let the opponents and the underinformed define the illness as a "mere" mental problem; the answer is to keep looking until the cause and treatment of a debilitating condition is found.

cinderkeys said...

In the case of Simon Wessely & co., I do believe it's dismissive.

The Wessely school's solution to ME/CFS is cognitive behavioral therapy and graded exercise therapy: patients are supposed to train themselves to stop thinking they're sick, and do exercises to prove to themselves that they can handle them.

These are not treatments that you recommend to people with a severe mental illness. Just imagine telling schizophrenics to do cognitive behavioral therapy so they can stop fretting about how the Martians are communicating with them via the fillings in their teeth.

Perhaps CBT is more effective for anxiety disorders like hypochondria. That's great. But again, if these guys really believe that ME/CFS is just a form of hypochondria, why are they now going on about their patients' physical ailments?

wyvernfree said...

>Not only that, but the constellation of
>symptoms that make up
>are too consistent and
pronounced to all be

What makes you say that? Many psychological illnesses have pronounced and consistent symptoms. Anxiety disorders certainly do. PTSD does. So does schizophrenia.

I've never seen any good evidence that ME/CFS is a psychological disorder, nor do I think it is; but even if it were, that wouldn't invalidate the people who suffer from it. Ironically, the whole "Don't let ME/CFS be defined as a mere mental problem! It's much too real to be psychological!" reaction is only perpetuating the exact dismissive attitudes towards mental illness that ME/CFS sufferers are getting hammered by in the first place.

The fact is, mental illnesses ARE physical illnesses. Mental illnesses are a subset of physical illnesses, because the brain is part of the body.

cinderkeys said...

If mental illnesses carried no stigma, then being misdiagnosed with one wouldn't be as bad.

But it would still be enormously frustrating. It would still mean nobody believes you.