Apr 1, 2012

Mind/Body Illness? Give me a break.

Alright.  I've been reading a whole lot of articles about which ME/CFS treatments are best, which treatments are harmful, the political bitchfight over who gets to treat it and the, often grossly ignorant and opinionated, comments that inevitably follow.

I've also had the opportunity to catch the new documentary Voices from the Shadows down at ME/CFS Victoria, which they were nice enough to let me watch in their office, despite it not yet being available to the public for purchase.  (Thanks!)

One thing that has become pretty clear to me, over all this watching and reading, is that the concept of the mind/body illness has got to be kicked to the curb when it comes to ME/CFS.  It's a wishywashy idea that only further muddies the numerous and vague descriptions of what ME/CFS is.  It helps no one.

I'm not saying I'm against the holistic approach to good health and well being.  When used appropriately, it's amazing what nutrition, exercise, massage, supportive counselling and meditation do for the body; especially if the body's ills are initially caused by stress or bad eating habits (and let's face it, most of us have ills caused by both).

For people with ME/CFS the holistic approach can aid in the management of symptoms.  When your body becomes highly sensitised to any form of stress and your digestive system decides to stop accepting processed food, the holistic approach can actually be a bit of a lifesaver.

This does not mean, however, that the term "mind/body illness" has any place in discussions regarding ME/CFS research or treatment trials.

ME was classified as a neurological illness by the WHO in 1969.  Mind/body strategies help people with ME/CFS the same way they help people with MS, Cancer or Heart Disease (just to pick out a few); they keep the body as strong as it can be under the circumstances and the mind thinking positively, but they are not curative.  And they can be harmful if the practitioner doesn't have a good understanding of ME/CFS and its effects on the body's limits.

So let's acknowledge all that, drop the label of "mind/body illness", and get real about finding the bio-medical explanation for why we all got ill in the first place, because right now, this scientifically meaningless label is being used politically to justify the psychiatric model of treatment for ME/CFS, and the negative impact on the direction of new research is massive.

Despite ME/CFS being officially designated a neurological illness, funding for ME/CFS research is current being directed toward a particular school of psychiatrists; the best funded ME/CFS trials so far being the Pace Trials, testing the effectiveness of Cognitive Behavioural Therapy and Graded Exercise as treatments.

To those people sitting back and scratching their heads as to why ME/CFS advocacy groups are protesting so vehemently against these trials when researchers are "just trying to find effective treatments," what you need to understand is that these treatments have already been in use since the 80s with very mixed and sometimes disastrous results for patients.

The researchers conducting these trials have long taken the attitude that there is no bio-medical cause for the symptoms of ME/CFS and so focus on correcting "false" illness beliefs.  Their view is that the illness is an irrational fear of activity which has manifested physically.  It's a bizarre attitude to take with a condition officially designated as neurological (WHO classification code G93.3) and neglects whole areas of study which have yet to be properly explored.  

The Pace Trials were not conducted to find new information on how to treat a largely mysterious illness; they were conducted to justify work already being done and long criticised by patient advocates as inappropriate and potentially harmful.

It's also important to note that the Pace Trials used the Oxford definition of CFS as their selection criteria; the most open and vague criteria available, allowing people with pretty much any fatiguing illness into the group, including clinical depression.  They then systematically removed anyone with genuine neurological symptoms from the trial (you don't need to have them with Oxford defined CFS).

This basically means that anyone with genuine ME, as defined by the WHO in 1969 and the Canadian Clinical Guidelines (now officially accepted world wide), was excluded from this particular trial.

As a result of this, all the Pace Trials prove is that when you use CBT and GET on subjects with a range of illnesses, a good percentage will experience some benefit.

The medical community already knew this.  The trial was a massive waste of money (over 5 million pounds).

And that's what people are really upset about.  Funding.

If the psychiatrists involved were simply using a small percentage of research funding available to look into one of many potentially beneficial treatments for people with ME/CFS, I doubt anyone would object too much. Unfortunately, by adamantly claiming ME/CFS to be a mental, or now "mind/body", illness, they are actively directing funds away from bio-medical research.

Imagine all the money for MS research being diverted away from neurologists and immunologists so that psychiatrists could attempt to prove that positive thinking and exercise was the best medicine.  It's ludicrous.

Money for bio-medical research for ME/CFS generally comes from patients and the fundraising efforts of advocates.  As a result, there is not much of it.

Despite this, over 4000 studies have been done on potential bio-medical causes of ME/CFS, showing irrefutably that there is a biological basis for this illness.  Evidence for a bio-medical cause of ME/CFS is on par with that for MS.  Neither have a single diagnostic test, but there are definite signs to look for in SPECT scans, EEGs, Thyroid Function, MRIs, Heart Rate, etc, etc, etc.

Here's a good page to look at if you want to see the comparison between ME/CFS and MS in detail: The Hummingbirds Guide.

Unfortunately, the ideology promoted by the psychiatrists involved has become very deeply ingrained in the medical, social and governmental approaches to ME/CFS over the last 30 years, and bio-medical findings are being largely ignored at the expense of millions of people suffering world wide.

Dr Nancy Klimas summed the situation up fairly well in an interview with the New York Times in 2009: 

"My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you, if I had to choose between the two illnesses in 2009, I would rather have H.I.V."

In 2012 things are improving slowly.  There are studies going on in Norway looking into a drug suppressing immune responses which are getting some decent support.  The XMRV retrovirus theory seems to have been a bust, but at least the publicity around it convinced a lot of punters to take ME/CFS a bit more seriously as a physical condition.

There has also been publicity around a number of deaths caused by ME/CFS, helping people to see how very serious the condition can become, several of which were also the focus of Voices from the Shadows which you can now watch here.

3 comments:

  1. I think more and more, medicine is turning to trying to psychoanalyze patients instead of facing facts about chronic illness. It used to just be women with hard-to-diagnose illnesses. Now men are "yellow wallpapered," too, and people with very obviously "legitimate" diseases are also blamed for the disease because they don't have a "positive attitude," or because they don't meditate or eat a certain diet, etc. And the name, in the US, CFS, contributes to this misconception. People take it much more seriously when you tell them it's ME.

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    1. If you can pronounce ME! Haha. I was doing a bit of research on MS and how they used to think that was psychosomatic. Interestingly, when it started to become more accepted as a physical illness, it was thought that men were more likely to be afflicted with it, simply because when presented with the same symptoms in men and women, doctors were more likely to take men seriously and women were thought to be hysterical. At least the discrimination against sick people is more gender equal than it was then. Though equal respect would have been a lot nicer than being equally dismissed.

      I think the rise in popularity of holistic medicine is also partly to blame. It makes people feel like they are taking you seriously because the approach looks at the whole body as well as the mind. A lot of the time people don't even realise they are putting your illness in the "less serious" category and will rush to defend the effectiveness of holistic medicine, rather than admitting they would never deem it appropriate to deal with other, equally serious illnesses.

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  2. I think the term mind/body illness probably stems from what M.E. stands for as the full name (which I'm not going to try and spell right now) means brain and muscle illness.

    I completely agree with your post and it's pretty much stated everything that I think but have difficulty putting into words so thank you for making it so much clearer and easier to understand.

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