Treading Water in the Media
Those who saw the BBC Look-East programmes on ME in January - following the meetings arranged by Invest in ME Research in Norwich - could have been forgiven for thinking a new wave of media professionalism was emerging.
These BBC programmes were formed in a day and presented good coverage of research and the possibilities provided with sound, high-quality biomedical research into ME.
One would expect much, much more from a BBC programme which had been months in preparation and which had been interviewing certain individuals and organisations whom one would expect to provide knowledge of the issues with ME and the causes of the problems faced by patients for a generation.
Recently the BBC Radio 4 File on 4 programme broadcast a programme on Children with ME [http://www.bbc.co.uk/programmes/b08vyly5]
For this programme, and at the eleventh hour, Invest in ME Research were contacted - ostensibly to provide the email address of a US researcher.
It was only by questioning the journalist on the reason for contacting this researcher that we were informed of the intention of the programme - a programme which seemed to be already in an advanced stage of preparation - and only by persistance that we were then able to alert the BBC to the Colloquium and Conference currently occurring in London.
As we wrote in the first June newsletter these were arranged at short notice
We organised interviews with paediatrician Dr Kristian Sommerfelt from Norway, Dr Amolak Bansal from Epsom and St. Helier NHS Trust, Professor Ron Davis of Stanford and Kjersti Krisner from Norway.
We also invited the reporter to our IIMEC12 conference the next day where he interviewed Dr Nigel Speight and David Tuller.
IiMER prepared these interviews by selecting a good cross section of scientists, researchers, clinicians and a parent of severely affected children with ME. And so interviews were conducted, at very short notice, during lunch on day 2 of the Colloquium - and more interviews followed the next day with Nigel Speight and David Tuller at our Conference, at our invitation to the reporter.
What surprised us was that, whichever sources of information had been used before in preparing for this programme, none had given any information regarding our Colloquiums or Conferences, nor of our attempts to create a base of biomedical research for ME in Europe.
And there was no awareness of the top researchers or even the Norwegian rituximab
research and trials.
We had no way of knowing if any of the relevant interviews would be used but expected at the very least that some might get through, that something might influence the direction and reason for the programme.
It was fortunate that IiMER created the opportunity to make the reporter aware of these.
Or so we thought!
The programme was broadcast on 27th June
And the result?
A wasted opportunity that did nothing to move us forward!
Just a repetition of what we all know.
And the level of hypocrisy from some commenting around this subject was beyond belief.
The amount of time given to a representative of a charity that was responsible for setting up the PACE Trial says it all.
When the programme had the opportunity of hearing from international researchers and clinicians – and actually was allowed access to interview some at BRMEC7 and IIMEC12 – then this represents another exercise in treading water on this subject.
The extent of this problem was not shown – neither was the international dimension - and no effort seems to have been made to explain the awful situation in which parents of children with ME find themselves.
But especially the real causes behind this scandal were not even looked at.
It was clearly a safe approach that was taken by the programme - and the reasons for the problem were not covered.
Why was the interview with Dr Speight, a paediatrician, not used – or the comments from Norwegian paediatrician Dr Kristian Sommerfelt, or parent of severely-affected children with ME, Kjersti Krisner, who described how similarly awful the situation was for children in Norway?
Who would know the real story and the scandal better than these?
Nothing was heard from Kjersti Krisner, a mother of three severely affected children with ME in Norway and who herself performs an amazing effort in helping families similarly targeted by negligent social workers.
And negligence it is because how anyone can fail to understand this illness nowadays is incomprehensible.
Disappointment might describe what we feel – yet we have come to expect little more from BBC, especially when the usual “preferred” sources for informationare used.
The families interviewed were the only ones who came through as genuine.
The rest was just underwhelming,
And as for those who argue this was not a programme about biomedical research – what a puerile statement!
It is all about research, or lack of it, as that is the cause of much of the misery behind the treatment of families with children suffering from ME.
If this programme had been one in a series of programs showing the scandal of how the UK governments and Medical Research Councils and the media have treated ME, with each episode showing something of the causes for the failure of ministers and CEOs and media editors, then once could excuse it.
But it was not in a series.
In the end we witnessed a vacuous, facile, purposeless programme – showing little initiative or effort to search for causes or for solutions.
A brief, cathartic release for some and an ego boost for others who just wish to be noticed by being included in a programme like this.
For people with ME and their families nothing changes.
And that underlines the complete waste of everyone’s time.
Yes, people with ME are always expecting the worst when such a programme is produced.
And then, finding that the programme or article carries something which is maybe sensible instead, are then overwhelmed with thanks and relief for something like this BBC programme.
They stop demanding the truth and the reasons and accept mediocrity and a status quo.
And the hypocrisy of some commentary is ignored.
And nothing changes.
Some people with ME believe that having anything sensible written or said about ME is sufficient - that one cannot get everything into a 40 minute programme.
It is understandable.
After a generation of appalling treatment by successive governments, by the flawed and biased policies of the Medical Research Council, and by cynical or self-serving "representation" by some charities and individuals - where establishment policy or personal egos and status are more important than the future for patients - it is apparent that accepting mediocrity in the media has become a by-product.
But it is not acceptable.
Because nothing changes.
The argument that the BBC needs to be fair and balanced holds no water.
The BBC has never been fair and never balanced regarding ME.
And after all this time and all the raisisng of awareness and all of the
research which has been performed or started we do not need balance - we need investigation and the truth.
The BBC made a documentary on ME (CFS) in 1999 - the Panorama programme.
Eighteen years ago - and we are still talking about the same issues in 2017!
How many years do we have to wait for this thing to be resolved?
This BBC Radio 4 programme did nothing to move us on.
A cathartic release from the normal dross of UK media coverage.
And then what?
Everything reverts back to the way it has been.
Eighteen years and nothing has changed despite all of the awareness that has taken place.
It just is not good enough.
Politicians and the media and the well-paid CEOs of establishment departments in MRC and NHS are complicit in this ignorance and unprofessional treatment of this disease.
Mediocrity is not unacceptable and maintaining the status quo is really not an option - though the establishment will not accept this.
When people in various countries have the chance to vote in their next general elections then bear in mind the policies and actions of their elected representatives towards ME.
If the number of people with ME and their families and friends could use their vote according to their dissatisfaction with policies on ME then maybe the election result would be somewhat different,
The same also goes to those paying fees to support charities, or individuals.
We do not know what pressures the BBC journalist or the producer of the Radio 4 programme had been put under, if any.
We do believe that a certain media centre and internal influences in the BBC would not be amenable to an honest and correct programme being broadcast about ME.
So all we can do is judge the end result.
We again recommend to any journalist and their producer who have a chance to perform real investagative journalism that it would be advisable for to revise the "preferred" sources of information - those that always seem to be interviewed or asked for information. They play the same story time and time again.
At least one reporter is now fully aware of IiMER and our Colloquiums and Conferences, and of our Centre of Excellence for ME and of our campaigning and our supporters, and of the rituximab clinical trial in Norway - and the fact that there is more information available than is being fed by those faces who monopolise the commentary.
We know of other plans in the BBC for reporting. Some of the stories and manipulation behind the scenes are reminiscent of a similar event some years ago when journalists working to expose the scandal of ME were "warned off" by representatives from a certian establishment orhanisation.
So we will wait and see.