The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

BBC interview with Ron Davis

Discussion in 'General ME/CFS News' started by Helen, Jun 1, 2017.

  1. Helen

    Helen Senior Member

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    PLEASE NOTE -- This post was originally on this thread --- Ron Davis, Ashley Haugen, Linda Tannenbaum and Raeka Aiyar at IiME

    We have moved the posts that are related to Ron's BBC interview as they were off-topic to the thread related to IiME.

    Thank you.

    ---------------------------------------------------------------------------------------





    Hopefully this interview will be a big step forward in UK :thumbsup:
     
    Last edited by a moderator: Jun 2, 2017
  2. Binkie4

    Binkie4 Senior Member

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    Hope this means the BBC will report it.

    How wonderful would that be especially with Prof Davis!
     
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  3. Helen

    Helen Senior Member

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  4. dangermouse

    dangermouse Senior Member

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    That would be brilliant.
     
  5. Barry53

    Barry53 Senior Member

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    Just googled but no sign I can find of a BBC report. Any clues would be good.
     
    NL93 likes this.
  6. Kati

    Kati Patient in training

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    Hmmm, be patient. It may be that they want to interview more people, or they are planning to attend the conference tomorrow. And then the journalist want to have the story right, needs to research, etc.

    Good reporting takes time.
     
    Ellie_Finesse, merylg, justy and 12 others like this.
  7. Barry53

    Barry53 Senior Member

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    Really is something very special. Some of the worlds greatest minds seeking the truth about ME, here in the UK. Pretty newsworthy huh ... you'd think? I wonder what the BBC's take is going to be on that ... oh I forgot ... probably has to be approved by the SMC first.
     
  8. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    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!
     
    Last edited by a moderator: Jun 2, 2017
  9. A.B.

    A.B. Senior Member

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    Disturbing. Do you know the name of the journalist?
     
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  10. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    No, but he's in the picture Ashley or I posted of the interview so maybe someone will recognize him.
     
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  11. Jo Best

    Jo Best Senior Member

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    Janet, this thread that Sushi created might serve the purpose. I'm sorry Ron had this experience and that's a great post by Ashely, thanks to you all, and you see what IiME and friends have been up against all these years.
     
  12. Neunistiva

    Neunistiva Senior Member

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    @Janet Dafoe (Rose49) Do you think it's ok if we tweet in protest to BBC? Very politely and calmly, of course.
     
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  13. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    I don't know enough about British politics and sensibilities to be able to answer that question. Perhaps you should wait and see what he reports first. And whatever you do, don't be vexatious! LOL
     
  14. A.B.

    A.B. Senior Member

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    Right. Could be James Gallagher. https://twitter.com/JamesTGallagher

    The same person responsible for ridiculously biased reporting on FITNET-NHS:
    http://www.meassociation.org.uk/201...overage-of-the-fitnet-story-13-november-2016/

    James Gallagher is also a member of the SMC's advisory committee, which seems to be an organization that in practice exists to promote industry friendly science reporting. Wessely is a trustee of the SMC.
     
    Last edited: Jun 2, 2017
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  15. ash0787

    ash0787 Senior Member

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    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.
     
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  16. A.B.

    A.B. Senior Member

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    @Janet Dafoe (Rose49) does Ron know that the controversy, doubt, psychiatric bias surrounding ME/CFS may be intentionally fabricated by tobacco scientists defending the interests of the health insurance industry? And possibly that of pesticide producers as well (exposure to organophosphate pesticides seem to sometimes lead to a syndrome that is very similar to ME/CFS).

    This is relevant because if true it would imply that we will never be able to convince Wessely and the others. Their job would be to literally disbelieve anything that isn't industry friendly. It would imply that the correct course of action would be to point out the conflicts of interest and ties to the insurance companies and the abysmal quality of their science. In other words, not polite debate but aggressive debunking of their fake science. The OMF is primarily a research organization but it could include in its press releases and material explanations as to why such and such finding is at odds with cognitive behavioural models for example.
     
    Last edited: Jun 2, 2017
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  17. AndyPR

    AndyPR Senior Member

    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.
     
  18. bullybeef

    bullybeef Senior Member

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    North West, England, UK
    It likely is someone from the Science Media Centre London: http://www.sciencemediacentre.org/about-us/governance/

    James Gallagher is listed along with other UK media Journalists.

    Worth recalling, the attack against ME patients in the UK began in the mid/late 1980s with a media smear campaign - the Yuppie Flu tag. The SMC wasnt officially formed until the late 1990s. SW has been involved with them too.

    Before this, ME was acceptable diagnosis, although some shrinks had tried to insinuate ME was hysteria in the early 1970s, without even interviewing any patients or doctors involved in the Royal Free outbreak.
    The Epidemic ME paper was published in the BMJ in 1978:
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1604957/pdf/brmedj00128-0006b.pdf

    There was a monumental shift during the 1980s which may have coincided with the Lake Tahoe outbreak and Unum working with the UKs Dept for Social Security, now the Dept for Work & Pensions.

    It does seem evident now, the UK PACE researchers are health insurance shills, involved in welfare reform/denial of Social Security benefits. Altering their money motivated agenda is going to take some doing.
    The Misleading Research at the Heart of Disability Cuts:
    http://www.huffingtonpost.co.uk/dr-simon-duffy/the-misleading-research-a_b_9726490.html
    Thousands die after being declared 'fit for work':
    http://www.mirror.co.uk/news/uk-news/thousands-die-after-being-declared-6348067
     
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  19. suffolkres

    suffolkres

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    Suggest thread could be called The "BBC and association of their staff with the Science Media Centre degrading good science reporting"
    It was James Gallager who "headed" the EC Eulogy on PACE "great great trial" aast year (-November ) on Radio 4 Today programme- got facts wrong which were later withdrawn by the BBC and possibly orchestrated by SMC. Lots of formal complaints were made to BBC, including Margaret Mar but to no availo. The BBC Science Team have been well and truly infiltrated on this and pesticide exposure issues, for residents like me, as well.
     
    erin, alisonorr, Orla and 5 others like this.
  20. lilpink

    lilpink Senior Member

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    I'm sorry you're shocked but I'm glad you're shocked...in equal measure. I'm glad members of the non-UK research community have seen, up close and personal, what it's like to live in this twilight world where 'up' is 'down', 'wrong' is 'right' and 'science' is a word to be twisted by the Establishment, the SMC, the BBC and all their 'hanging-on' cronies to make it whatever they need it to be. This is how the UK officially sees ME and has done so ever since those myopic morons, Beard and McEvedy, re-wrote the reality of this disease 47 years ago. You should be shocked.... I've lived with this disease since the year, 1970, that Beard and McEvedy first changed the narrative. Many others have travelled the same the course... it hasn't been easy (said with typical Brit understatement).
     

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