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Media and ME - Soundbite Healthcare

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.”

Well, 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. The modern medium allows irresponsible and biased articles to be called out quickly for inaccuracies and downright misinformation.

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.

IiMER have 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 the four follow-up requests for this to be handled, 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.

The friendliness of media editors to those who influence policies on healthcare and research, to the detriment of patients, seems 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 have 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 research from the media means that most invitations to our conferences are ignored.

More and more media will eventually be forced to avoid quoting repeatedly from the spin-factory media centres.
It was good to see the Canary ( being different after attendance at one of our international ME conferences.
We hope the media will also stop going to the same sources in the establishment to look for comment – it is too cozy a club.

The latest spin on a research paper is from the BBC (again) that relied only on the media centre spin and not looking for new or novel thinking, using instead standard establishment voices to add comment (click here).

But the odds are evened up nowadays.
So here is Invest in ME Research’s response to the paper highlighted in the BBC news –

Invest in ME Research Statement

17 December 2018

The Institute of Psychiatry, Psychology and Neuroscience, King’s College London, study by Russell et al.
“Persistent fatigue induced by interferon-alpha: a novel, inflammation-based, proxy model of chronic fatigue syndrome” has been much hyped by the press to show the first time ever that CFS involves an overactive immune response.

Invest in ME Research are not quite as excited about the study as the media attempts would prefer as fatigue induced by interferon-alpha is well known.

Although the study did show that psychosocial risk factors did not play a role in persistent fatigue it does not challenge the model put out by the biopsychosocial (BPS) school of thought that CFS is maintained by behavioural and lifestyle factors that can be amended by a short course of CBT and GET.

The study used the so called Oxford criteria to select the CFS cohort.
These discredited criteria only require prolonged unexplained fatigue as a requirement and not the hallmark post-exertional malaise (PEM) as in other more stringent ME/CFS criteria.

The study also used the discredited Chalder Fatigue score that is problematic as it cannot measure deterioration if the starting point is low.

We were also surprised from the sociodemographic table to see 62% of the CFS cohort had history of depression and 70.6% had family history (first degree) of mental illness.
This seems very high and makes us question the type of patients that attended the CFS specialist recruitment clinics at the South London and Maudsley (SLaM) and the Royal Free NHS Foundation Trusts.

Usually studies on ME/CFS patients have reported good mental health scores despite low physical functioning scores so the demographic features of this King’s College study seem at odds with other ME/CFS studies/cohorts.

This research may be of use for fatigue research - but people with ME and their families would like to see public funding being spent on well-defined ME patients for a change.

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