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.
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ME/CFS (CFS/ME!) on BBC "Today" Programme NOW - can anyone tune in

Discussion in 'General ME/CFS News' started by Barry53, Sep 21, 2017.

  1. Barry53

    Barry53 Senior Member

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    About 1 min ago was a short news item, and apparently a couple more items later in the Today programme on Radio 4.

    1st item was about LP! Rather disheartening, and I suspect EC on later. !!!

    But it did mention that current thinking is that ME is a immune system problem. Also that CBT/GET cannot fix problem, only symptoms.

    The BBC Today Programme is on NOW (06:50 UK time) on Radio 4, so if anyone can track this would be great. I cannot at this moment.
     
  2. Cheesus

    Cheesus Senior Member

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    Did they mention what time they'll be discussing it?
     
  3. Cheesus

    Cheesus Senior Member

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    It's on now!
     
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  4. Countrygirl

    Countrygirl I'm with Cheesus

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    Listening........
     
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  5. Cheesus

    Cheesus Senior Member

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    They have two guests. Crawley and "Anne", who is an ex-ME sufferer that is about to conduct research with Crawley. She doesn't want to use her real name because she is fearful of abuse. She had EBV onset at the age of 13. She had SMC and activity management under Crawley, which she says was very helpful.

    She doesn't feel able to reveal her identity because she "knows about the abuse people get for researching the condition".

    Crawley says 1% of children missing a day of week at school. Field is desperate for better treatments. She did the research because children kept asking her about its efficacy.

    She is being challenged as to why some people thought LP was a bit flaky. She said she didn't think it would work. She says we understand more now about the link between the brain and the body. She talks about how exercise reduces inflammation (generally, not in ME - she is hypothesising why it might work).

    She says that ME Association says that children with ME shouldn't have research (seriously). She says we have to do research because they are different to adults with ME.

    Back to the abuse. Crawley says she doesn't know why researchers are abused. She says people feel neglected and angry and that has spilled over into abuse. She says it is a tiny minority of patients that abuse (read: tribunal found no evidence of abuse at all).

    That's it.
     
  6. Skippa

    Skippa Anti-BS

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    Well that's... really not as bad as I feared... the news bit... and mentioning immune stuff and CBT blah blah (although it doesn't ease the symptoms but never mind)

    I truly wasn't going to log on at all today... but here we are!

    Didn't see the bit re Crawley.. still, not a disaster
     
  7. Countrygirl

    Countrygirl I'm with Cheesus

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    My jottings as EC speaks.

    Child with Glandular Fever.

    Child's name not given because of abuse researchers get.( advised by EC to say this?)

    Awful symptoms at age 13.

    Crawley with even best treatment 15% still ill after a year.

    EC did research because children wanted to know about it.

    What we have shown children who do LP do better.

    EC had thought it was a bit 'flaky'.

    But we know now how execise changes the brain.

    Children will now have this in the future as part of the treatment

    EC criticises the MEA for not wanting research into Children

    Now the subject of abuse.

    EC's asked why should abuse happen.

    EC doesn't know why abuse happens. Bitter people who have been ill for so long.

    But majority of people do want research and want to get better.
     
  8. Chrisb

    Chrisb Senior Member

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    I wonder what was said at the SMC press conference, or whether certain sections of the press can be trusted to react appropriately.

    Is it coincidence that the Grauniad links to "Chronic Fatigue Syndrome researchers face death threats from militants"
    and the BBC starts with "Ann" unwilling to disclose her name because of fear.

    Coincidence?
     
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  9. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Coincidentally I turned off Today not long before. Probably just as well, would have wound me up.
     
  10. Cheesus

    Cheesus Senior Member

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    I want to quote verbatim what Crawley said about the MEA:

    So, you heard it here first, @charles shepherd doesn't want to help sick children.
     
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  11. Countrygirl

    Countrygirl I'm with Cheesus

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    EC omitted to say that 'Anne' who is so fearful of abuse has been rigourously instructed NEVER to say she is 'doing' ME and has to lie about feeling ill.

    An omission that enables Crawley to again make a mockery of UK science.

    Just a slight problem there.........which immediately overthrows this dangerous nonsense.

    EC also forgot to say that the 'victims; of LP can also experience the joys of having Parker pass his spirit into their bodies. How comfortable is the NHS in adopting the scheme of a man who makes this claim.?

    Will it become compulsory, perhaps? Just for the adults maybe. .

    It will be fascinating to see whether anyone with half a brain in the scientific community has the integrity to point out that the empress indeed again has no clothes and is stark naked.

    Once more we see the real victim in this has been brainwashed to believe that her abuser is her friend.

    Will we hear Prof Holgate gush over his 'very good friend's' astounding scientific acumen later today, or has he learnt which side his bread is really buttered by now, if he wants to retain any integrity and respect?
     
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  12. Skippa

    Skippa Anti-BS

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    Quit smoking campaign backs ecigs has prevented this from being front page health story ha!
     
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  13. Cheshire

    Cheshire Senior Member

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  14. Londinium

    Londinium Senior Member

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    I would imagine the MEA can ask for a right to reply on that one?

    Rather gratifyingly, I don't see the LP story in the top 10 for BBC, Guardian or Telegraph. It doesn't make their main pages.
     
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  15. Countrygirl

    Countrygirl I'm with Cheesus

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    Esther Crawley should be struck off the medical register for her abuse of children and misleading a whole generations of paediatrician. It won't happen until her 'protector' comes to his senses.

    Dangerous lady!
     
    Last edited: Sep 21, 2017
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  16. bertiedog

    bertiedog Senior Member

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    I guess this is EC's fightback against all the recent biomedical research findings from several quarters around the world that ME/CFS involves a block in our energy metabolism which can cause all the symptoms we suffer from. Absolutely zero to do with what our attitude towards our illness is and definitely nothing that exercise can fix.

    Pam
     
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  17. Barry53

    Barry53 Senior Member

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  18. charles shepherd

    charles shepherd Senior Member

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    Thanks for the transcript!

    I heard this live at 7.50am and am very annoyed by this totally inaccurate comment about the MEA and it's position on research into childhood ME/CFS (which we fully support - providing it is ethical and does not involve pseudoscience) to put it mildly!

    Incidentally, we were approached last night by the overnight team on the BBC R4 Today programme to do an interview - but for reasons which have not been explained this was not then followed up……

    CS
     
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  19. charles shepherd

    charles shepherd Senior Member

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  20. slysaint

    slysaint Senior Member

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    Will Phil Parker be invited to talk at next years CMRC conference?
     
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