Fighting ME/CFS and the Media
These are particularly dark days for people living with ME/CFS in the UK. Sufferers are used to being misunderstood by non-sufferers and unsupported or ignored by health professionals, but they are currently facing their biggest challenge yet - the British Media.
In reaction to last week's welcome news that NICE had caved into pressure and agreed to review NHS treatment guidelines, some sections of the media appear determined to misrepresent the illness by minimising its severity and continuing to present the lie that it can be successfully treated and even cured by Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) - despite this being vehemently rejected by the overwhelming majority of sufferers as deleterious to their health or laughably inadequate; and what's more, not borne out by the research that close analysis has demonstrated to be scientifically flawed.
What could be driving such behaviour? Ignorance and resentment cannot be discounted. ("We're all tired, mate." Yes, we are, but normally you will feel better after a couple of hours extra sleep.) More likely, however, are the careers and reputations at stake of the medical professionals who initially rushed to explain the illness as all being 'in the mind', and who even now ignore strong evidence to the contrary coming from cutting-edge biomedical research. There has also been speculation that resistance to change is politically-motivated. After all, what Conservative government would welcome an additional 250,000 people potentially being eligible for disability benefits? (My local Conservative MP, Peter Bottomley, recently refused to sign a petition requesting an Early Day Motion to discuss the inadequacy of NICE guidelines in Parliament.) Add to this the media's inherent desire to never let the truth get in the way of a good dust-up and you can get a sense of what people with ME/CFS are up against at the moment.
Whatever the reasons, people living with this debilitating illness that in many cases has devastated their lives, are now faced with the additional burden of dreading every unchallenged Today programme interviewee promoting pseudo-science; every You and Yours phone-in that inexplicably drops the term ME in favour of the more trivial-sounding CFS; every Guardian mention of miracle cures at expensive brain retraining workshops; every Telegraph profile of some semi-famous person who has rediscovered good health via pumpkin spice lattes and their 'creative process'.
What can you do? If you are a sufferer, and you are well enough, you can challenge the misrepresentation, and correct perception by letting people know what it is really like to live with a severe neuroimmune disease with virtually no support available. If you are a non-sufferer, you can perhaps suspend judgement, after consuming these biased media servings, until they've been confirmed or refuted by those who have an intimate and painful knowledge of the illness.
Eventually, like many stigmatised health conditions, ME/CFS will be accepted in the public consciousness, and more effective forms of (pharmacological) treatment will be available. Before then, media misperception and deliberate bias has to be called out wherever it is found.
In reaction to last week's welcome news that NICE had caved into pressure and agreed to review NHS treatment guidelines, some sections of the media appear determined to misrepresent the illness by minimising its severity and continuing to present the lie that it can be successfully treated and even cured by Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) - despite this being vehemently rejected by the overwhelming majority of sufferers as deleterious to their health or laughably inadequate; and what's more, not borne out by the research that close analysis has demonstrated to be scientifically flawed.
What could be driving such behaviour? Ignorance and resentment cannot be discounted. ("We're all tired, mate." Yes, we are, but normally you will feel better after a couple of hours extra sleep.) More likely, however, are the careers and reputations at stake of the medical professionals who initially rushed to explain the illness as all being 'in the mind', and who even now ignore strong evidence to the contrary coming from cutting-edge biomedical research. There has also been speculation that resistance to change is politically-motivated. After all, what Conservative government would welcome an additional 250,000 people potentially being eligible for disability benefits? (My local Conservative MP, Peter Bottomley, recently refused to sign a petition requesting an Early Day Motion to discuss the inadequacy of NICE guidelines in Parliament.) Add to this the media's inherent desire to never let the truth get in the way of a good dust-up and you can get a sense of what people with ME/CFS are up against at the moment.
Whatever the reasons, people living with this debilitating illness that in many cases has devastated their lives, are now faced with the additional burden of dreading every unchallenged Today programme interviewee promoting pseudo-science; every You and Yours phone-in that inexplicably drops the term ME in favour of the more trivial-sounding CFS; every Guardian mention of miracle cures at expensive brain retraining workshops; every Telegraph profile of some semi-famous person who has rediscovered good health via pumpkin spice lattes and their 'creative process'.
What can you do? If you are a sufferer, and you are well enough, you can challenge the misrepresentation, and correct perception by letting people know what it is really like to live with a severe neuroimmune disease with virtually no support available. If you are a non-sufferer, you can perhaps suspend judgement, after consuming these biased media servings, until they've been confirmed or refuted by those who have an intimate and painful knowledge of the illness.
Eventually, like many stigmatised health conditions, ME/CFS will be accepted in the public consciousness, and more effective forms of (pharmacological) treatment will be available. Before then, media misperception and deliberate bias has to be called out wherever it is found.
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