While the ME community is absorbing the finer details of the recently published report by the US’s Institute of Medicine (IOM), the silence surrounding the IOM report in the UK media is almost deafening. Whatever one’s opinion regarding the finished product, this is a significant study produced by a major and respected United States organisation, part of the Unites States National Academies, concerning a disease that affects between 100,000 and 250,000 UK citizens. There has been extensive coverage in various media outlets in the US but reporting in the UK has been near to non-existent. Call me a cynic but had the IOM study concluded ME was a predominantly psychological condition and renamed it ‘Cannot be bothered to exercise syndrome’, I have no doubt, following heavy promotion by the Science Media Centre (SMC) and the likes of Wessely and White, the report would have been plastered all over the British press. The failure of the latter to report anything ME-related unless it suggests the disease has a psychogenic aetiology is an abysmal state of affairs, promoting the continued belief amongst the general public that ours is an illness that can be cured with exercise or positive thinking. Contrast the paucity of coverage of the IOM report with the publicity given to a poor piece of research from the PACE trial authors in January 2015. This was disseminated across various UK media outlets, receiving a large amount of publicity and causing the ME community to endure a torrent of idiotic, harmful and upsetting headlines; while a major report by a large US government agency is ignored.
To clarify for the British media the physical basis of the illness myalgic encephalomyelitis, not chronic fatigue syndrome or chronic fatigue or yuppie flu or whatever demeaning and trivialising names UK journalists wish to use: The IOM report states;
‘The primary message of this report is that ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts. It is “real.” It is not appropriate to dismiss these patients by saying, “I am chronically fatigued, too.’ (IOM, p.5, 2015)
On page 162 the interested journalist would find the following conclusion based on a thorough research overview,
‘There is sufficient evidence suggesting that ME/CFS follows infection with EBV and possibly other specific infections.’
From page 209,
‘The committee agrees that the term “chronic fatigue syndrome” can result in stigmatization and trivialization and should no longer be used as the name of this illness.’
The report references attitudinal barriers on the part of physicians,
‘Other attitudinal barriers include physicians’ low self-efficacy and lack of positive outcome expectancy with respect to ME/CFS.’
I would suggest that attitudinal barriers play a major role in preventing the UK media treating ME sufferers with the respect and consideration they deserve, when reporting on the condition.
Another point from page 242 of the report is especially pertinent,
‘PCPs and other health care providers are consumers of mass media, and they report that the media—particularly news outlets—play a significant role in their awareness of new health information.’
This is certainly the case in the UK where the media’s skewed and biased reporting of ME over the past few decades has enabled the medical profession and politicians to ignore a debilitating condition that blights the lives of thousands of sufferers. They are left with no prospect of treatment, barring the discredited and harmful CBT and GET, but instead face abuse from those who should be providing support.
I believe it is a question of morality, the media have promoted the psychiatrists’ line about ME for the past twenty five years, despite there being no science to back up their psychogenic hypothesis, indeed all the science showing that ME is a physical disease is ignored: this has to stop. As exercise physiologist professor Keller stated in January 2015,
“Given what we have learned in the past eight years about this illness, it is intellectually embarrassing to suggest that ME is a psychological illness.”
Disclaimer: This blog post is not written in favour of or against the IOM report, its exlusive point is to address the lack of balanced media coverage regarding ME in the UK.
1) http://www.nap.edu/catalog/19012/beyond-myalgic-encephalomyelitischronic-fatigue-syndrome-redefining-an-illness (Accessed 12/02/2015)