Opinions

Truth denied: the “scandal of ME Denial”

Written by: Stuart Brown, Neurological Involvement Network Member

Published: 09/04/2019

Stuart discusses the problematic status of ME and how things are changing.

People who deny the obvious are annoying.  There are plenty of them, denying that Neil Armstrong walked on the moon, denying that the earth is spherical and many other facts besides.  Overwhelming scientific evidence doesn’t stop some people from denying plain truth.  Most of the time it doesn’t matter if, say, you think the world is flat.  Some folk will find your oddball belief a bit irritating but that’s about it.   But there are times when being a denier will cause immense harm and this is definitely the case with ME.

What is ME?

ME – Myalgic Encephalomyletis – is a disease which affects about twenty thousand people in Scotland.  The main symptom is a very debilitating malaise which occurs after any sort of exertion, although there are many others including crippling fatigue pain, heart problems, poor sleep, cognitive impairment (“brain fog”), digestion issues and intolerances to things like certain prescribed drugs.  The condition is generally lifelong:  relationships, holidays and even simple daily tasks become fraught with problems.  Most sufferers can’t work and their quality of life is very poor.

ME is poorly understood as research is slow and under-funded but we do know that it’s a neurological disease, that it’s often associated with infection and that cells are not getting energy the way they should.

One thing we know for certain, even at this stage: it’s not an invention of the patient’s imagination; they’re not making it up and they’re not workshy. ME is a real, miserable and devastating disease and there are thousands of scientific papers to prove it.

Why?

Why does the scandal of ME denial persist in the 21st century?  Why would some doctors dismiss ME patients and pooh-pooh their experience?  Why would some health professionals withhold their care?  The main practical reason is the absence of a specific test.  There is currently no routine way of diagnosing ME using samples of blood (or anything else): making the diagnosis is up to a doctor’s judgement.  There are also a host of emotional and historical factors: a review of an ME outbreak at the Royal Free hospital was bungled, some wild assertions about ME made in the 80 and 90s have stuck, mistakes were made in a major ME study which have caused controversies ever since.

What?

What is the result of ME denial?  It’s not just emotional distress, severe though that is.  Thousands of people languish interminably in beds and on sofas simply because there is virtually no treatment on offer in Scotland.  Worse still, some interventions offered by NHS Scotland which we now know are harmful such as strict exercise regimes called ‘Graded Exercise Therapy’ are still being offered – something which MP Carol Monaghan referred to as “one of the greatest medical scandals of the 21st century”.

Its not all doom and gloom:  some patients do get better, there is a thriving informal ME support network, research is making slow but definite progress.  A petition by Emma Shorter of #MEAction Scotland – a young woman in Edinburgh who is herself an ME patient – has gained considerable recognition and support at the highest levels of the Scottish Government and across the different Holyrood parties.  The petition calls for better treatment for ME patients, better education of health professionals, more research and an end to harmful interventions.  There is a lot of hope that things may get better for Scottish people with ME.  But the most entrenched opposition is often found within the medical profession.  For them the message is clear: ME denial must end.

You can find Emma’s petition and read the evidence for yourself on the Scottish Parliament website (this link will take you away from our website).

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