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Department of health quoting £3.5m investment in CFS/ME to look at new approaches to treatment - misleads public

Discussion in 'General Advocacy Discussions' started by Cinders66, May 10, 2018.

  1. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    hi

    I've just been listening to radio Solent at 7:40am BBC local radio. Great advocacy by local lady regarding millions missing but the main drive from her was lack of funding which was responded to at the end by the same statement from the DOH given to the newsbeat documentary about £3.5m being invested past six years looking at new treatments.

    I'm really troubled by this because obviously what patients are protesting is the lack of money for biomedical research whereas I'm pretty confident the research that doh is referencing is the type of behavioural research we haven't wanted, such as the NIHR funding Crawley and Collins to look at CBT & GET. Can anyone think of anything else to account for that money? This ofcourse isn't going to be understood by the public so what the government is trotting out completely undermines the "there's been virtually no money invested in biological research " message that people are trying to get out this week. Knowing how government spins on other matters to obsfucate and create false impressions, I think this is what's happening now , or even if it's innocent it's having a completing neutralising effect in the media AFAIC. What can we do, we can reply to counter But in just responding to the media as we hear it as I've done for eg on newsbeat Facebook, it's too late, the message is already out there.

    DOH statement on research funding

    "Chronic fatigue syndrome is a debilitating and poorly understood condition. That's why over the past six years we have invested £3.35 m in research to improve understanding of the condition and to look at new approaches to treatment....."

    Whereas my understanding the past six years is that in terms of biomedical research may 2012 to May 2018, there's been the mark Edwards study possibly getting around £200 000 and some funding has been quoted for further biomedical research, perhaps Newton or mitochondrial I cant remember, that's it.
     
    Last edited: May 10, 2018
  2. petrichor

    petrichor Senior Member (Voting Rights)

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    That amount, even if it was all invested in biomedical research, is still extremely low for the extremely large impact ME has. I think a proportionate amount more in line with other diseases could be something around £20 m per year, not £3.5m every six years. I'm not completely sure, but I think MS, which affects 100,000 and is less disabling on average, might receive about £10 m per year, so a sensible figure for ME would be double that. That would mean ME is underfunded by a factor of 34. (But then most/all of that research isn't biomedical anyway)
     
    Last edited: May 10, 2018
  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    https://www.bbc.co.uk/programmes/p064fp8d#play

    starts around 1.35.00

    @chicaguapa

    eta: short interview with Charles Shepherd
    then at around 2:53:00 about #MillionsMissing in Southampton and people contacting them/experiences of ME.
     
    Last edited: May 10, 2018
  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    This is dreadful: first person who called in from Chichester says after 5 weeks of exercise therapy he was recovered.......and that he was 'rather a neurotic person'.
    why on earth they gave him so much airtime.........

    eta: the second caller says her son got better 'because of his determination' (that's a very short interpretation of the long story).
    I'm all for positivity but this is sending all the wrong messages.
     
    Last edited: May 10, 2018
  5. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    The thing is this isn't like the NIH recognising the nature of the illness and doing the right things and justifying themselves through that but doing it at just at a far too minor level

    This is a government unit , and I got the impression at the parliamentary debate too, that thinks largely financing exploratory approaches to activity management is a fine response to CFS. We are calling for urgent, major investment in biological research and that need isn't even on their radar it seems .
     
    Last edited: May 10, 2018
  6. large donner

    large donner Guest

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    No surprise, the world and his dog thinks they have got or had ME now if they can answer yes to , 'do you ever feel tired'? What makes it bad in ME awareness this week on BBC is that the BBC cannot grasp what the hell it is they are supposed to be informing people off and therefore dont set the boundaries for the discussion by explaining diagnostic criteria etc and challenging people when they claim to be cured after only five weeks of being ill. Surely someone in the whole of the BBC has a critical scientifically thinking mind? Otherwise what's the point just pumping out the same jumbled up mess they have been doing for decades. To be honest this is the problem with live phone ins especially when the call screeners have no background understanding of what the hell they are supposed to be presenting to the public. It just comes down to another day at the office filling up individual slots so that there's no dead air time.
     
    Last edited: May 10, 2018
  7. Wonko

    Wonko Senior Member (Voting Rights)

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    3,500,000/6/250,000 = £2.33 per patient per year (less than a single cup of coffee for people who like coffee in a non environmentally friendly cup).

    In comparison a single GP visit was estimated to "cost" £45 in 2014.
     
  8. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    I think in comparison dementia is conplaining (justifiably ) of the £90/patient they get.

    But it's not even for biomedical research, they're not going to put in £10m for biomedical research if they believe, as they seem to still, that CBT and get or pacing or their variants are the low cost solutions.
     
  9. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    That's an interesting context - lunacy reigns
     
  10. Esther12

    Esther12 Senior Member (Voting Rights)

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    That does sound like a stretch. It would be interesting to see how they're justifying that claim.
     
  11. Trish

    Trish Moderator Staff Member

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    I suspect most of that money has gone to Esther Crawley for SMILE, MSGENTA, FITNET and other such junk. What a waste.
     
  12. chicaguapa

    chicaguapa Senior Member (Voting Rights)

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    I did two interviews on Radio Solent yesterday morning on different transmitters for Hampshire/ IOW and Dorset.

    The first was at 7am https://www.bbc.co.uk/programmes/p064fp8d (0:35:00) which was the one that had the DoH response at the end. I was initially a bit disheartened by the DoH quote and signalled that I wanted to say something but wasn't able to. But having listened to it back, I think they dug their own hole with it. I'd said £5m wasn't enough. They said they'd invested £3.5 which made it look even less.

    The second was at 7.40am https://www.bbc.co.uk/programmes/p064frnx (1:11:02), this time better prepared in case they trotted out the DoH response again. I made it clear that £5m in 50 years wasn't enough for 250,000 people.

    But overall, I think we get bogged down in facts and figures. My husband reminded me before I went on that we now live in the post-truth era. Whilst I'm not going to suggest we all tell lies, people only remember how they feel and what they are told. If they hear that there's not enough funding, that's what they remember. Hope that makes sense!
     
  13. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Good work!
     
  14. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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