BBC interview with Ron Davis

[TreePerson]

I cannot understand a science reporter who does not have a genuinely open and enquiring mind. Maybe the best that we can hope for this time, is that having had the privilege of speaking to scientists who have been involved in the human genome project, this particular reporter will realise what he's up against and just go away and write nothing. But that he also might begin to question privately whether his friends in high places have all the answers.
I would have thought it's better to wait and see if an article is written rather than go on the attack now. Because that runs the risk of us appearing vexatious or unhinged.

 

[bullybeef]

Apologies for a little going off-topic. I saw Janet's post, and felt compelled to comment.

Unfortunately, PACE collaborators has transmogrified ME so such to perhaps purposely create a conspiracy parody. They've stated a deceit for so long, too many believe it, regardless whether the science supports it. And over 25 years on, any attempt to alter the landscape is anti-science, fake news or conspiracy.

The irony & parody is, it was they whom conspired to redefine ME into their figment Oxford CFS concept, except they rarely go into such vital detail when communicating with the media.

They've managed to lobby govt & medical bodies to accept policy to purposely permit Drs to NOT screen for an Incurable, Neurological disease - To purposely misdiagnose people.

You couldn't make it up!

 

[sarah darwins]

Oh my gosh! I just talked with Ron and he told me what happened in that BBC interview! I'm so shocked!

The first question was something like, Do you support taking sick kids away from their parents when they refuse to follow established protocols?

He thinks the guy will likely find some phrase he can use to make it sound like it fits his ideas.

Welcome to the world of the British media, the BBC very much included. Attack dog journalism — the idea that you're not doing your job if you're not bringing somebody down — has become an abiding doctrine. The practice Ron was subjected to, of putting words into someone's mouth and inviting them to say yes or no, and interrupting any attempt at a thoughtful response, is everywhere. It's standard practice on BBC television interviews. Up until now, you've probably tended to see the best of the BBC's news output — its foreign affairs coverage. Its domestic coverage is another matter.

Unfortunately, Ron has come up against a combination of this and a clear tendency among BBC science reporters to regard themselves as righteous guardians of Science (capital S), by which they mean established orthodoxy and what anyone with an official title, or sufficient letters after their name, says. Most have little clue what science actually is, or how it's supposed to work. They're pompous hacks, plain and simple. You get the odd exception, of course, but I'm afraid this is pretty typical stuff.

I'm sorry Ron was subjected to this. It's probably given Ron an unwanted insight into the problems around this disease in the UK. It's why the work Ron and others in the States (and Norway and a few other places) are doing is so incredibly important to all of us here. Our best hope.

 

[Binkie4]

@Rose49

Thank you so much for your wonderful updates, and for conveying your shock. It just helps to have a community of like minded people.

 

[Ysabelle-S]

What the heck is wrong with the BBC? Has it turned into FOX news?

The short answer is, Yes. And not just on this topic either.

 

[slysaint]

The short answer is, Yes. And not just on this topic either.

and what's even more perverse is that everyone in the UK has to pay a license fee (£147 pa) to pay for the BBC, whether they watch it or not as it is classified as a 'Public Service Organisation'.
http://www.bbc.co.uk/aboutthebbc/insidethebbc/whoweare/publicpurposes
"
The BBC will provide accurate and impartial news, current affairs and factual programming of the highest editorial standards so that all audiences can engage fully with issues across the UK and the world."

 

[suseq]

Dear @Janet Dafoe (Rose49) It is really sad and disappointing that something that seemed so positive turned into such a negative experience. Ashley's words are profound. We all come to know a sense of fear and concern with this illness in relation to how we are perceived and treated, and how we can best care for and represent ourselves when need be.

The questions did seem astonishingly controversial, upsetting and provocative given your families experience and that of the other interviewees, which the journalist should have known if they had carried out even minimal research beforehand. However, I think you are right to suggest waiting to see what the journalist reports before anyone raises a complaint.

Hopefully any subsequent report is not misrepresentative, but if it is then maybe a formal complaint along the lines of the one made by the Countess of Marr regarding previous misrepresentation may be most effective, but that is for your family and those involved to decide.

Hopefully too all the incredible goodwill and positive collaboration this conference generates will win out.

With hugs and kindest regards.

 

[bullybeef]

It is worth noting, since the SMC have various go-to 'science' journalists, perhaps they make sure they stick to their party line, rather than it being a network's agenda.

This by no means supports the BBC's lack of integrity, but I believe all our main networks have links to the SMC, and perhaps other party political mouthpiece quangos advising of various subjects.

But I do agree, each network should perform true independent checks & balances, and not accept everything the SMC journos suggest.

Many suspect the SMC was created/supported by our former government (Tony Blair's Labour Party) to have more control how 'science' is reported - I suspect the byline being, "Don't cause a panic!"

 

[boolybooly]

Well it may be shocking but if you think how it plays out in transmission that is not such a bad question to ask because it is so disgusting. So I will cross my fingers for now and hope for the best.

Public sentiment in the UK is against the misuse of medical power and there was an example this morning on Victoria Derbyshire of the couple whose son in essentially being kept prisoner by Gt Ormond St Hospital. She brought out the issue very gently but forcefully and the injustice of the situation was very evident.

So dramatisation is how they get through to people and also the politicos who must be swayed for things to change. So I am hoping that this is a case of dramatisation.

As you relate the discussion it sounds like it plumbed the depths of our discontent but that is a good thing even if it does remind us of the world of hurt we have to live with, its time other people understood that. I hope this is a way to bring it out and not ridicule our predicament.

Ashleys piece is nice and to the point. In the end its all of us, which is why it matters how that little boy and PWME are treated, because how they are treated is how everyone will be treated if they fall ill, which is what I mean by saying its all of us.

 

[Stewart]

When it comes to ME/CFS the BBC unfortunately - and perhaps understandably - toes the Establishment line. The SMC tentacles extend in all directions (Hail Hydra!) with the result that trying to point out that ME/CFS is biological is akin to Galileo's experience when he argued in support of heliocentrism - you meet a wall of opposition for taking a position that runs counter to the 'scientific orthodoxy' of the day. No-one dares to be the first person to proclaim that the Emperor is wearing no clothes - so very few science reporters seem prepared to break ranks and give you fair coverage. From the account Janet has given, it certainly appears that James Gallagher (if indeed it was him) isn't going to offer it.

(From the questions he asked it sounds to me like he wasn't really interested in the conference, and was instead working an angle about criticisms of PACE resulting in a growing number of 'ill-informed' parents obstructing the doctors who are using CBT/GET to help their kids, necessitating the children being taken into care for their 'own good'. But we'll have to wait and see (hear?) the report he comes up with before we know that for sure.)

The BBC does some good work but they are overall not trustworthy
http://i.imgur.com/ZOoEQ8n.png

Just the past couple of days there is a scandal because they had a formal election debate with 7 political parties but the supposedly representative audience was seemingly about 75% in favor of one party, and it wasn't the one which is leading in the polls.

You mean the BBC, which has been obviously anti-Corbyn, was surprised that their audience didn't blindly support the weak and wobbly Tories? I do agree though the BBC isn't to be trusted to be without bias.

I think the election debate the other night really can't be taken as evidence of the BBC's lack of impartiality. One of the party leaders couldn't be bothered to attend, and as a consequence the representative of that party who attended in their place received a rough ride from the majority of the audience who felt offended by the leader's absence. Given the circumstances I think that's an entirely understandable audience reaction. Whatever 'bias' existed is unlikely to have been down to audience selection, but was instead a predictable response to one of the parties appearing to insult the audience. But this is obviously getting a bit off topic...

 

[bullybeef]

I wrote an email to James Gallagher sometime ago which echoed much of what Ashley wrote. Sadly, apathy is rife in the UK with the disability/class system raising its ugly head. This is evident with how David Tuller is being shunned by the establishment. The UK govt have pretty much fanned the flames with their savage austerity cuts, causing thousands of deaths over the recent years.

The PACE Trial's dogma and whole biopsychosocial model will spill into ignoring people with other Medically Unexplained symptomatology, maybe even doctors with suspected cancer: http://blogs.bmj.com/bmj/2016/08/25/lisa-steen-the-wilderness-of-the-medically-unexplained/

And the NHS now believe ME/CFS belongs in the Unexplained & Somatisation: http://www.nhs.uk/conditions/medically-unexplained-symptoms/Pages/Somatisation.aspx#Causes

 

[lilpink]

This is all you need to know (presuming it *was* James Gallagher): http://www.sciencemediacentre.org/about-us/governance/

 

[shannah]

Oh my gosh! I just talked with Ron and he told me what happened in that BBC interview! I'm so shocked! He was warned that the BBC was on the side of PACE and were totally biased. The people in the interview were 1 scientist (Ron), 2 doctors, and one caregiver who has 3 kids with ME/CFS. The first question was something like, Do you support taking sick kids away from their parents when they refuse to follow established protocols? Ron said they all gasped and didn't answer the question but talked about the protocols being totally wrong. 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 with regard to the treatment and protocols and bad science on ME/CFS. He said that when they tried to explain what was wrong with the PACE trials that the reporter just interrupted them and asked another question trying to get them to say something he could use to support his already formed ideas supporting the psychiatric model and PACE. He said they all did their best to tell the guy the real story about the British approach and the truth about the disease and how awful patients are treated in England. Ron and the others were all just disgusted. He thinks the guy will likely find some phrase he can use to make it sound like it fits his ideas. Ugh. It'll be interesting to see what he publishes. What the heck is wrong with the BBC? Has it turned into FOX news? I have always loved lots of stuff from the BBC. Gosh. Ashley was so grossed out that she wrote an amazing post for Facebook about it. Get Ashley mad and the woman can write! She's awesome. Here it is:

"If there is one thing you should take away from the disease, Chronic Fatigue Syndrome, it is fear. You should be deeply afraid that it will come for you, or someone you love. It can strike anyone at any time with no rhyme or reason. It is spreading around the country like wild fire with denial from the political world. Imagine a disease like ebola or the end stages of AIDS spreading across the world with no one of power willing to acknowledge it exists. Imagine your mom, your sister, or your son, gets sick and nobody will believe that it is real. But this disease doesn't end your suffering with death or a treatment like ebola or AIDS. This disease leaves you just moments before death for years. You are holding on to life by a thread, fighting with every fiber of your being while the disease laughs at you, because it's not going to kill you, it will leave you in the moment just before death for years, the rest of your life. Imagine that is your family, your loved one, your best friend. Imagine the government and every person around you telling you that there is nothing wrong with them, it isn't real, their disease doesn't really exist. While they are unable to move, bedridden, on feeding tubes in a dark room with no noise or sound. Just imagine that horror and be afraid. Be afraid that it just might choose you, and remember that fear the next time you tell me that my brothers disease isn't real."

I posted this here but I hope the thread doesn't get totally hijacked onto the topic of PACE and the BBC and British protocols. If people want to do that let's start a new thread. And put a link to it here so I can find it!

Is there a link to Ashley's posting?

 

[bertiedog]

The BBC does some good work but they are overall not trustworthy
http://i.imgur.com/ZOoEQ8n.png

Just the past couple of days there is a scandal because they had a formal election debate with 7 political parties but the supposedly representative audience was seemingly about 75% in favor of one party, and it wasn't the one which is leading in the polls.

Just for a bit of balance, my understanding was that they used a private organisation to sort out the political leanings of the audience so it was not down to the BBC themselves.

Pam

 

[sarah darwins]

Thanks for creating this thread, @Kina . It was rather derailing the other one.

 

[Sean]

Not in the slightest bit surprised.

The BBC, like 99% of British media, have been completely captured, co-opted, and corrupted on this issue.

 

[ash0787]

I was going to say ... I wonder what they personally get out of it ... I can't really think of a reason why someone would go on a ideological crusade against a certain disease, so maybe financial motivations....

You say hes associated with the 'SMC' ? that might constitute a journalistic conflict of interest, it might be possible to report that to somebody.

And AndyPR I don't want to really get into the british politics talk too much but yes you would think bbc are anti-corbyn , judging by how they went after him when his driver ran over that guys foot ... none of the parties particularly appeal to me though and I can't even vote anyway as I'm from buckingham.

 

[Aroa]

I knew the situation was bad, but didn´t expect it was sooo terrible. I am shocked. It is so disturbing and inmoral the behavior of this journalist

Real SCIENCE will win this battle !!!!

 

[Barry53]

What the heck is wrong with the BBC? Has it turned into FOX news? I have always loved lots of stuff from the BBC.

I've said quite a few times in PR how I used to be so very impressed by the BBC's investigative reporting, and how now I feel so disgusted and betrayed by them, and ashamed of them.

I think there is something much darker and more sinister going on, and I don't believe this is mere paranoid conspiracy theory. It all starts with the question: why did the DWP part fund the PACE trial, something they have never ever done before or since? I'm sure it's because if you want to avoid paying patients legitimate welfare payments, you must misbrand them as loafers who's illness is all in their heads, and don't want to get better ... because they would then lose welfare payments. So you (whoever 'you' is/are) pulls strings so that a major medical trial gets funded, run by people already identified as sympathetic to the notion of all in the head, and whose careers can be seriously enhanced if they toe the line. It's all about the public purse, and people whose dodgy behaviour is so entrenched in the history of it all, they dare not retreat now.

The SMC is also I'm sure a major tool in this, allowing the lie to continue, and to perpetuate it.

When you have something like this in play, there are some serious power mongers on the field.

The odds are this will be very hard to get objectively reported in the UK - if there is any chance of it being sensibly reported back in the US or elsewhere, that would be fantastic. Maybe even reporting the bizarre interview experience itself!

 

[Seven7]

What we need is David Tuller to interview the reporter!!!! Or at least let him know what happened.