BBC interview with Ron Davis

[Jo Best]

The BBC journalist had contacted the conference organisers Invest in ME Research and they gathered a few people to be interviewed including scientists and Norwegian advocate and mother of three children with ME Kjersti Krisner, who introduced David Tuller at the pre-conference evening dinner and whose own pre-conference dinner presentation from 2016 (included on the IIMEC11 DVD) is now online (warning for patients/carers that it is about very severe ME and could be upsetting to watch): http://www.investinme.org/IIME-Newslet-1705-01.shtml

Jane Colby (Executive Director of The Young ME Sufferers Trust) was involved with the BBC Panorama programme aired in 1999 'Sick and Tired': http://news.bbc.co.uk/2/hi/programmes/panorama/archive/506549.stm

In the context of the London conference, she was the only UK ME charity representative to give a public comment of support for the Invest in ME Research Centre of Excellence for ME via the Let's Do It for ME crowdfunding campaign launched in 2011 by people with severe ME, as did the Chairman of the Forward-ME Group Countess of Mar.

Interestingly and coincidentally, patients sent their press release for Let's Do It for ME on the same day as the 'dangerous ME extremists' media frenzy orchestrated by the Science Media Centre and launched (if memory serves me) by BBC Radio 4 Today Show. No surprises for guessing which story was splashed across the British media.

Here we are, some six years later, still being ignored in public, while the actual work progresses, as evidenced by the London Invest in ME Conference, and as reported on by regional BBC Look East in January 2017:
http://www.investinme.org/IIME-Newslet-1701-02.shtml

Also in the context of the child protection issues, here's the lovely Dr. Nigel Speight at the conference yesterday.

https://twitter.com/i/web/status/870614414935904256

 

[Esther12]

As it seems likely there was a misunderstanding here, maybe it would be best if @Janet Dafoe (Rose49) edited the post about this interview, in case other people are being misled by it?

Probably a lesson to be learnt by all of us here about being cautious in how we interpret other people's actions, and trying to seek clarifications? When we've got such a bad history of mistreatment by the UK media, that can make it hard to give journalists any leeway.

 

[Ash]

Perhaps just a note that it may not be as bad as it sounds first rather than totally delete it, until we actually see what ends up on the radio?

 

[Esther12]

Perhaps just a note that it may not be as bad as it sounds first rather than totally delete it, until we actually see what ends up on the radio?

That was what I meant - I wasn't clear though.

 

[ukxmrv]

We do need to be prepared for a possible "Panorama" type backlash if the BBC article is supportive of patients. I was thinking that this could potentially be another "Panorama".

@Jo Best kindly posted a link to the old Panorama prog on the BBC website but it might pay to read about the complaints about the program to the Broadcasting Standards Commission but that was only part of the backlash. There were some hate filled comments in the media on Panorama.

http://news.bbc.co.uk/1/hi/programmes/panorama/archive/1158787.stm

The SMC are sure to know about the potential BBC coverage and they will have set up a response which may be out of proportion to the original program. If we know to watch out for this hopefully we will be ready to counter it when we can.

The BMJ may get into anti ME mode again

http://www.bmj.com/rapid-response/2011/10/28/sick-and-tired-0

 

[Seven7]

We need to prepare for counter, do you think that organization from PACE school is random?! For each progress article arracking PACE they put out some highlighting how great it is.
We can also play the game. I think we need to make sure this is covered in as many outlets as possible ( the truth of the conference).
And if the article comes back negative: expose the writer/ editor and any person related. And get them so hard that they wil think about messing w this community again.
My years are flying by. I ahve no time to mess around and deal w people BS. Time to take ME seriously. Or join the effort or get the heck off the way. Or we will push you aside and expose you as you are!!!!
Game over fellows. Time to get real.

 

[Janet Dafoe]

That's good to hear. It seems perhaps the problem was that Prof Davis was under the impression he was to be interviewed about his work and was taken aback, understandably, to find himself being asked about child protection issues etc in the UK.

But we've often said that there's a big story here, and from what you way it sounds like someone has cottoned on. Fingers crossed.

No, he was not under that impression. He was asked to be interviewed about the PACE trials by a BBC journalist. I have written what he told me and what he experienced and felt. He is clear that they all felt that way, although of course he can't speak for them. He thinks it's possible that the interviewer was clever and baiting them, but he has no idea. I think we just need to wait and see what the report is like. Perhaps he got some really good quotes! He is also clear and agrees with me that leaving the post is fine. It accurately reports his experience. He is also looking forward to seeing what the report is like.

 

[trishrhymes]

Thanks, @Janet Dafoe (Rose49) . I think you're absolutely right to leave your original post as it was. And thanks for explaining that Ron and the others knew the interview was about PACE. I hope this means the quotes about PACE making these UK researchers a laughing stock and the indignation at the way patients are treated will be used in the broadcast. Please thank Ron for speaking out for us and for giving us hope with his research.

 

[Janet Dafoe]

I've been thinking about this a lot. Perhaps what I'm going to say is obvious. But outsiders don't know. This is not just a bunch of people learning about some science at a conference, and scientists doing their usual research, and doctors learning about another disease. This is a group of people intimately connected with deep suffering every single day. People who have to hold it together to even come to a conference like this. People in a public place who are trying not to cry when they feel hope, or when they are reminded of their sadness. Prick the surface, and intense reactions can come out. Perhaps this journalist is a great reporter and used a technique to get some good quotes. If so, I think he got some doozies! He just probably wasn't aware of the pain under the surface that he unleashed, not only in the interviewees, but also in everyone who heard about it. Just look at what it unleashed in Ashley! Even her heartfelt paragraph, coming from pain, may end up doing good. My very deep hope is that his article, or program will reflect the truth, the intensity and the pain. Perhaps it will contribute to all our ME/CFS children being safe with their parents. That would be a truly wonderful outcome, and worth it.

 

[trishrhymes]

Thank you, @Janet Dafoe (Rose49), you put it so beautifully. I have noticed that several of the best and most dedicated researchers and others working to promote research have a close personal connection with ME, most of all you, Ron and Ashley.

As an ME sufferer with a daughter also housebound with ME, I am both patient and sole carer, though thankfully neither nearly as sick as Whitney, my heart goes out to your family. Thank you for being so willing to share. It moves and supports me. I feel less alone.

I hope, like you that the reporter picked up the pain as well as the anger and does a good report.

 

[Jo Best]

You make excellent points @Janet Dafoe (Rose49) about the unique nature of the London conference.
According to the live tweets, Olav Mella said,
"I've been coming to this conference since 2011 and it consistently has the most science"
(he presented on the Phase 2 rituximab trial in 2011 prior to publication)
and I wonder how many people realise that's because the conference is organised by parents of children with ME (Richard and Pia Simpson) who live daily with the urgent need to see this disease solved and the grim reality that they do this against a background of downright antagonism and blatant attempts in UK to undermine their efforts.

They had posted on Facebook that they "arranged a BBC interview with researchers allowing the Right Stuff to be given a chance to be seen and heard." and "The pre-conference dinner was a great success in wonderful surroundings. David Tuller speaking very passionately about the Wrong Stuff." (PACE trial).

I'm sorry Ron had this experience and that's a great post by Ashley, thanks to you all, and you see what IiME and friends have been up against all these years.

Just to add a nice note about BBC journalism, this was written by BBC Look East TV presenter Susie Fowler-Watt, following their excellent coverage relating to the public talks by researchers in Norwich (Simon Carding, Kari Sorland, Ingrid Rekeland, Øystein Fluge) and update on the Invest in ME Research Centre of Excellence in January (the Institute of Food Research that she refers to is now called Quadram Science and the work moves into the new building the Quadram Institute on the Norwich science park in 2018, which Ian Charles spoke about at the Londone conference).

The January TV news was uploaded by a PR member to youtube in two parts: the early evening news sequence, which features severely ill Rosa Amor of the Let's Do It for ME crowdfunding campaign (she's had ME since the age of 8 following a gut infection) and her mother Julia; and the studio interview with Simon Carding in the late evening slot. Links are on this page: http://www.investinme.org/IIME-Newslet-1701-02.shtml

 

[ash0787]

Did they say they would definitely publish something ? if they cant spin it to represent their agenda they may not even publish anything at all, they probably wont distribute an opinion that contradicts their own from their previous articles.

 

[Large Donner]

Im afraid the moral of this story is never do an interview with a journalist without filming it yourself. Its so easy to do these days even on a mobile phone. Then you have the full context of the interview and your own copyright and can upload it with further commentary onto youtube etc.

 

[Large Donner]

The real question is why does the public accept poor quality journalism as truth? I mean even uncontroversial scientific papers are routinely reported incorrectly and this is widespread across the field (hugely hyped headlines etc).

Outside of the ME issue most of us here on this forum even knowing what we know about propaganda are doing the same thing with news not related to ME. I'm afraid most people are guilty of it.

99% of people in every county in the world simply lap up the news relating to wars, financial crashes, historical events, terror attacks, the causes, who is at fault, who caused what etc uncritically.

Its just the nature of how propaganda can work, or even just how lies are not corrected. Its always only happening in another country where "the people are just too stupid and too trusting of their own systems, but luckily we live in an open society".

People may think that doesn't have anything to do with the ME issue yet its usually only the major issue that affects one so directly that they are forced to look under the covers to see real truths. For most of us here its ME.

Until we really understand how much propaganda there is all over the world and not just in North Korea, China or Russia our societies will continue to be asleep in the comfort that "that could never happen here".

The problem we have waking the mainstream society up to the ME issue is because its almost impossible that the 30 year saga is true, yet that's how a big lie works. Its so big no one would entertain it could happen right infront of their eyes.

 

[charles shepherd]

Sunday 3 June

I have been in contact with the BBC journalist during the course of today to pass on some of the concerns and queries that are being expressed on social media

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[Daisymay]

The problem we have waking the mainstream society up to the ME issue is because its almost impossible that the 30 year saga is true, yet that's how a big lie works. Its so big no one would entertain it could happen right infront of their eyes.

This is so very, very true!

 

[Barry53]

I've been thinking about this a lot. Perhaps what I'm going to say is obvious. But outsiders don't know.

I think this cuts to the chase in many ways. I call these people the "innocently uninformed". With a great many other medical conditions, even outsiders are fairly well informed, or at the very least not wilfully misinformed. The media plays a major role in their enlightenment. But for ME that is so different, the media being implicated in the general public's misinformation; possibly duped themselves, but to my mind very culpable in that they often don't seem to look beyond what they are spoon fed. Which is why it would be so fantastic if the UK media (BBC especially) actually stood up for the truth at last, and actively sought it out.

My feeling is that if the UK media still does not expose the truth about ME attitudes, and poor science, then it would be very helpful if other countries' media could do the exposing for us, possibly exposing the UK media's reticence on it all. But there may be the chance here for the BBC to redeem itself, so lets give it that one more chance.

 

[Diwi9]

My only real concern with all of this is that the media love a controversy. Our illness has become one, and a big one in the UK. My guess is that they will give both sides of the story, in an effort to further inflate the controversy. It's a true pity that often investigative journalism isn't really about getting to the bottom of the story...but creating a story. The REAL story here is that science is unfolding a very serious and neglected illness that has resulted in decades of needless suffering and human rights abuses!

 

[dreampop]

"Ron told him that the protocols in England are totally barbaric! He told him that England is the laughing stock of the entire world scientific community..."

Haha I love this!

 

[Yabisa]

And what about send a INTERNATIONAL complain to the human rights court?