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Media and ME

The media - an instrument that could do so much good to educate and influence - and yet so often does neither and instead just serves particular vested interests.

We saw this definition regarding media -

“The word ‘media’ is derived from the word medium, signifying mode or carrier.
Media is intended to reach and address a large target group or audience.
The word was first used in respect of books and newspapers i.e. print media and with the advent of technology, media now encompasses television, movies, radio and internet.
In today’s world, media becomes as essential as our daily needs."

Unfortunately, the same article carried on with this dubious comment –

Media of today is playing an outstanding role in creating and shaping of public opinion and strengthening of society.”

“Media is the sword arm of democracy. Media acts as watchdog to protect public interest against malpractice and create public awareness.”

Last year's UK election would not have supported that statement. Certainly Brexit might have resulted differently had the last statement been implemented.

In politics the media coverage often seems to have been shown up for its many shortcomings with accusations of bias and propaganda promotion, with anonymous sources being quoted giving party-affiliated comments.

In UK and USA governments are frequently interlaced with their media supporters with fake news and faked news being reported more frequently as fact.

In this article last year Peter Osbourne called out the main media for their coverage

Yet the last election was not the first occasion where the media was shown to be manipulative, biased, hypocritical, immoral or just self-serving.

As far as ME is concerned then the media has often been using the "sword of democracy" to denigrate people with ME rather than defend them and has been anything but a watchdog to protect against malpractice.

Mainstream media has often been at odds with patient experiences.

Of course, this is because the establishment media has been so controlled by the Biopsychosocial (BPS) influences where favours can be called upon to spit out any article at any time just to defend a BPS acolyte, or even the BPS high priests themselves, if their careers needed boosting or defending.

We well remember the 2011 drivel put out by the press
The 2011 summer barrage of anti-ME patient articles demonstrated that the establishment was making a coordinated response to the anger and frustration of ME patients who saw flawed science that was keeping them ill.

The publication of a seemingly coordinated set of articles which further denigrated people suffering from this disease reflected a realisation in many quarters that the PACE Trial had been shown to be the flawed and meaningless publication that ME groups had predicted for years.

Margaret Williams' article on Media and ME appeared in the 2011 Journal click here reported on how poor research results are spun into a positive message with the help of media centres.
Nowadays this topic appears more and more applicable as social media facilitates transparent discussion.

In fact, in recent times it has been more embarrassing for the media to get it so wrong due to the effects of social media.
This modern medium allows irresponsible and biased articles to be called out quickly for inaccuracies and downright misinformation.
It becomes far harder to gain support for flawed media articles when there is more than one opinion being seen.

As we wrote in this article
“The readily available access to these establishment entities - where television, radio and news appearances are set up with no impediment from production departments - contrasts embarrassingly with the news blackout concerning the biomedical research taking place which is making progress - or with the efforts of patients and their friends and families to raise funds for the research that is actually required.”

The results of poor research, and the biased media reporting, can more easily be highlighted.

Yet it does not guarantee fairness or balance - as election coverage has shown.

Our recent press release [] publicising the charity's pledge of almost £700,000 for biomedical research into ME in Norwich Research Park, including the only current clinical trial for ME in the UK, deserved media coverage. Yet it received no media coverage whatsoever.

IiMER has challenged the BBC and other media misrepresentation, misinformation and mediocre research performed by their backroom staff before their articles appeared.

One complaint we made to the BBC regarding their story on a report in the Lancet Psychiatry journal - "Exercise can help with ME, scientists say".

Our response to the BBC article was here .

We received the same template response from the BBC - an organisation whose salaries are paid for by the public –

“ Thanks for recently contacting the BBC. We aim to reply to complaints within 10 working days (around 2 weeks) and do so for most of them but cannot for all.
The time taken depends on the nature of your complaint, how many others we are dealing with and can also be affected by practical issues such as whether a production team is available or away on location.

This is to let you know that we have referred your complaint to the relevant staff but that it may take longer than 10 working days to reply.
We therefore ask you not to contact us further in the meantime. If it does prove necessary however, please use our webform, quoting any reference number we provided.
This is an automatic email sent from an account which is not monitored so you cannot reply to this email address.

Apart from the automated reply – which we did receive for the complaint as well as for the four follow-up requests for this to be actioned - the BBC chose not to respond.

We also asked the BBC for parity in being represented on their website along with the establishment charities.

Of course, they did not oblige.

We doubt things have improved today.

The friendliness of media editors to those who influence policies on healthcare and research, to the detriment of patients, has seemed to know no bounds.
Whilst complaining about the Leveson inquiry infringing their liberties the media have done exactly the same to a vulnerable section of society who had been hard pressed to counter their misinformation.

We complained to the Press Complaints Council many years back about a series of articles that predictably came forth from the hired hacks in the establishment media - PCC Complaint Aug 2011.shtml

Charities such as IiMER are often ignored by those in the media who are supposed to serve the public – doing anything but “playing an outstanding role” and often just going to the same, predictable establishment spokespersons who trot out the same tired statements.

Of course, it has not been for want of trying to educate the media. But the inevitable desire for simplistic solutions to complex problems which leads inexorably to soundbite healthcare and nebulous background research efforts from the media means that most invitations to our conferences have been ignored.
It was good to see the Canary ( being different after attendance at one of our international ME conferences.

Some years ago we did organise a media opportunity by inviting a journalist to lunch at one of the IiMER Biomedical Research Colloquiums. We organised a number of different researchers to be interviewed as well as the mother of three severely affected children.
The charity got no mention of course. The research Colloquiums were not mentioned and neither were the years of successfully providing a platform for international collaboration, of course
The vast quantity of research knowledge and a parent's experiences were ignore. Instead we had some easily condensed soundbites that blended into the journalists's 'narrative. See June 2017 Newsletter - BBC Colloquium Interview Arranged by IiMER.

Even in recent times we can see a science media centre promoting the views of the biopsychosocial crowd by quickly and probably pre-created publicity in response to the NICE Draft Guidelines for ME document.

So one was provided with the collective view of everything that has been wrong with ME (research and funding) for a generation with the same people still in denial and peddling the same flawed theories.
Thanks to the work of Invest in ME Research they did, belatedly, include a comment from Professor Simon Carding of the Quadram Institute in Norwich Research Park.

The SMC spin was predictable and showed that they really have not understood anything about the new media or the disease itself.

It would be an improvement if the media would also stop going to the same sources in the establishment to look for comment on ME - whether it be biased science media centres or their establishment charity friends – it is too cozy a club.

More and more media will eventually be forced to avoid quoting repeatedly from the spin-factory media centres.
It is hoped that the now common Fact-Checkers that were employed to correct Trump's erroneous statements in the US election and, more recently, those falsehoods made by the UK Prime Minister and his government, will also be employed frequently to correct errors in the media about ME.
Until then the ME patients and carers and Invest in ME Research will do it for them.

But the odds are at least evened up nowadays.

Social media has provided a tool for challenging everything.

As Eric Topol writes "Twitter is evolving as a "go to" for science and medicine -

For ME the media is one problem that is being effectively tackled.

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