Tuesday, 13 May 2014

Why does stigma still surround ME?

Because doctors believe it's all about deconditioning


Almost nobody, except a tabloid headline-writer, says ME is “all in the mind” these days. So why is there still such a stigma attached to ME/Chronic Fatigue Syndrome? 

In my experience, the stigma gets  worse the more severely affected with ME you are. Now that my illness presents in a moderate form, the treatment I get from the medical profession is mostly benign neglect. When I was very severely affected it was a different story: I experienced outright hostility, open disbelief, accusations of hysteria, attention seeking, malingering and manipulation. I was very, very ill and yet my poor parents were shunned by doctors and left to care for me alone.

While doctors rarely say ME is all in the mind, many of them believe something close to that.The most influential group of researchers into ME/CFS in the UK have established a  received wisdom on this complex and poorly understood illness. They work on the premise that:

“cognitive responses (fear of engaging in activity) and behavioural responses (avoidance of activity) are linked and interact with physiological processes to perpetuate fatigue.”

The Deconditioning Theory of ME/CFS

According to this widely accepted hypothesis, the physical symptoms of pain and fatigue in ME are a normal physiological response to a deconditioned state. Patients get deconditioned because they avoid activity, wrongly believing it will make them more unwell.

Here's an illustration of the theory: a vicious circle of anxiety about symptoms, mistaken illness attributions, excessive rest and activity avoidance, deconditioning, further symptoms upon attempting activity, leading to further anxiety...



It also goes under the name of the Biopsychosocial Model, which is a bit misleading because there’s very little of the “Bio” or the “Social” in it. What it translates as, to GPs and other medics too busy to look into less well publicised research and science, is that ME/CFS is aches and pains and tiredness within the normal range but filtered by an over-anxious mind. Now you begin to see where the stigma comes from.

The deconditioning theory may be plausible for someone who presents to their GP with mild ME, e.g. difficulty exercising. The treatment offered – Cognitive Behaviour Therapy  to change your perceptions of your illness and help you gradually increase your activity levels -  also seems plausible, although recent trials show it does not result in an objective increase in function.

But how on earth do you explain the symptoms of someone who presents with severe ME, who can’t sit up or feed themselves, by the deconditioning hypothesis?

Did I really become anxious, inactive and deconditioned in my mid-twenties to the extent that I could no longer lift a spoon to my mouth, or wipe my own bum? If I did, my apprehension of reality must have been very seriously distorted. Yet instead of the compassion and care you might hope for if you were suffering from severe delusional state, my family and I got cruelty and abuse. The “treatment” offered to us was to leave me on a ward, without help to feed myself, until I got so hungry I would snap out of my little game and eat by myself. 

Doctors can’t explain severe ME by the deconditioning theory. Sadly, some resort to vilifying or shunning what they can’t explain. I’m lucky I was over 18 at that time, or I may have faced the “child protection” bureaucracy that has seen many children and young people with ME separated from their parents and institutionalised under damaging “treatment” regimes.

Recent biomedical research squarely refutes the theory that the physical symptoms of pain and fatigue in ME are caused by deconditioning of the muscles. Muscle biopsies from people with ME show significant abnormalities in function compared to healthy but sedentary controls.

To end the stigma of ME and the shocking neglect and even abuse towards severe ME we have to knock the deconditioning theory on the head once and for all. We need to change the received wisdom on ME within the medical profession. It won't be easy but it looks like at last we science on our side.

7 comments:

  1. Well said. Thank you.
    There will be deconditioning present, yes. When (includes "if") I start to improve I will need to consider that.in gradually building myself and my muscle tone back up.
    (I remember what it was like getting back on a bicycle for the first time in fifteen years!)

    But to have it as the major, key or even only mechanism is ridiculous.
    Refutation by observations are simple and numerous (if they are actually looked for)
    Just for one example, my jaw muscles are hardly "deconditioned by disuse", but they can now hit fatigue limits and report fatigue pain just as much and as well as well as other muscle groups.
    Other examples I could give.
    The deconditioning model has to go. It doesn't fit.

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    1. I find that if I present it to doctors as a question, whether it's possible to become deconditioned so quickly, in one week, they say No; it takes a couple months.
      But when presented as facts, that one week I was walking 4 miles to/from work and the following week even 4 blocks from the bus stop to my desk required me to rest for an hour before doing any work, they immediately attribute it to deconditioning, and argue with me when I tell them it's impossible to become that deconditioned that fast.

      I've been known to point at a bookcase in the corner and challenge the paunchy doctor "I can lift it with the books still in it; can you?" Funny how none of them are so married to their deconditioning theory that they're willing to have me demonstrate that my muscles are stronger than theirs. (I can only do it once, but I can do it.)

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  2. Thank you for your heartfelt testimony! I didn't post this year for ME Awareness Day as Life Keeps Happening... Not all of it bad, but meant I wasn't together enough to make a post. I'm gradually reading the blog posts from others as I find them, yours meant a lot to me.

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    1. Thanks Maggie, it means a lot to know that I've touched a chord somewhere. My very severe ME years were so long ago but never processed emotionally so I feel privileged to share it now

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  3. Great post! :D
    Thank you so much for helping raise awareness by participating in the #May12BlogBomb.
    Over 100 posts resulted, and links to the others can be found here: http://sallyjustme.blogspot.co.uk/2014/05/May12BlogBombLinks.html

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  4. Perceive yourself stigmatized, and stigmata will follow.

    My illness, NON HIV AIDS, has no stigma. All I receive is care, concern, love, assistance, and inquiry.

    www.cfsstraighttalk.blogspot.com

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  5. The deconditioning theory fails to explain how fatigue effects all muscles, not just the ones that are being used less. Muscles that are being used just as much, ie the facial, jaw muscles get just as sore and we can't blame that on lack of exercise.

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