Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Hazel O'Dowd (PACE author) webinar for GPs sponsored by AfME

Discussion in 'General ME/CFS News' started by slysaint, Jun 12, 2017.

  1. slysaint

    slysaint Senior Member

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    This is probably not news to a lot of people but given that O'Dowd recently confirmed support for PACE and is closely associated with EC, thought I'd put it out there:

    From AfME 5 year plan:

    In July 2015 we sponsored
    Webinars for GPs
    to run a pilot webinar on M.E., led by
    Dr Hazel O’Dowd, Clinical Champion for CFS/M.E. Services for Avon, Gloucester,
    Wiltshire and Somerset. This attracted more than 150 GPs and had its running time
    extended by an hour to accommodate the many questions they asked.

    Jan 2017 also sponsored by AfME:
    Meeting the Challenge of CFS /M.E. (CME Webinar)
    Dr O’Dowd is currently the Deputy Chair of the British Association of CFS/M.E.


    https://www.webinarsforgps.com/even...ing_wp_cron=1497269211.0817880630493164062500

     
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  2. Esther12

    Esther12 Senior Member

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    Hazel O'Dowd in 2017? I can't believe @Action for M.E. are promoting people like this. How can I still be surprised by how terrible Action for ME are?
     
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  3. Dolphin

    Dolphin Senior Member

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    For anyone who doesn't know, Hazel O'Dowd isn't a medical doctor (she's a psychologist).
     
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  4. Daisymay

    Daisymay Senior Member

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    Agreed, it's inexcusable.
     
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  5. trishrhymes

    trishrhymes Senior Member

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    Does anyone know what she actually said to the GP's? Anyone have access to the talk? I assume you have to be a GP to be allowed to sign up to watch it, I haven't tried.
     
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  6. slysaint

    slysaint Senior Member

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    but we do have a few doctors on PR............;)
     
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  7. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    Another person to ridicule. They're too generous to us. I'm overwhelmed with gratitude. :balloons::balloons::balloons::thumbsup::angel::rofl:
     
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  8. Keith Geraghty

    Keith Geraghty Senior Member

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    CBT all the way - DoH funded since 2004

    £250k given to her to fund study in 2011 GP education v CBT-GET v usual care from UK HIHR
    https://www.nbt.nhs.uk/news-media/l...d-£250000-study-effects-early-intervention-me

    Also author and key figure of the PACE trial - our favourite publication

    Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial.

    White PD, Goldsmith KA, Johnson AL, Potts L, Walwyn R, DeCesare JC, Baber HL, Burgess M, Clark LV, Cox DL, Bavinton J, Angus BJ, Murphy G, Murphy M, O'Dowd H, Wilks D, McCrone P, Chalder T, Sharpe M; PACE trial management group.

    Lancet. 2011 Mar 5;377(9768):823-36. doi: 10.1016/S0140-6736(11)60096-2. Epub 2011 Feb 18.
     
  9. Keith Geraghty

    Keith Geraghty Senior Member

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    I was struggling to find the output publication for her £250,000 funded NIHR study - funded in 2011

    then I found this - she planned to recuit 100 patients but only managed 44 --- so much for the 250k and didnt really publish anything as far as I can see from betweeen 2011 and 2017 of significance from this study

    Early Intervention in Fatigue – A Feasibility Study

    National Institute for Health Research RfPB

    Ref. PB-PG- 1010-23253

    Study Summary

    Chronic Fatigue Syndrome (CFS/ME) is quite common and can be severe. Patients with CFS/ME have

    felt ill for more than 4 months, this stops them working or taking part in other activities.

    Patients with CFS/ME told us that with early information on sleep and managing activities, they

    might not have become so ill. We developed a package of advice and support that could be offered

    early on when patients had only had fatigue for 1 to 4 months. We wanted to find out if GPs could

    identify patients with a short history of fatigue; whether it was possible to provide support; whether

    patients would take part in the study and whether they found the support helpful.

    GPs identified patients with fatigue and gave them information about the study. Eligible patients

    were randomised (like tossing a coin) to receive either standard GP care or standard care plus the

    package of support which we called “Early intervention (EI)”. The EI included a one hour

    appointment with a fatigue specialist, an information booklet and three 20 minute telephone

    support sessions. We contacted those taking part at 6 and 12 months to collect information on

    fatigue, pain, mood and disability.

    We talked to participants and asked them about the process and support they received (early

    intervention and standard GP care). We talked to those who took part in the intervention and those

    who dropped out. We also interviewed GPs to find out what they thought about early fatigue, the

    study and what they offered as standard medical care.

    Results: 44 participants were randomised, 28 had the intervention and 16 had usual care from their

    GP.

    Feasibility: We aimed to recruit 100 participants to this study, but were only able to recruit 44. In

    addition, 9 (32%) who should have received EI did not have all the sessions offered.

    Acceptability: Although 12 of the participants told us that some of EI was useful, 11 of these

    participants also found some parts unacceptable. Four participants were still experiencing fatigue

    after completing EI and two felt they wanted more help at the end. Four of those we talked to did

    not find EI acceptable and withdrew. Reasons included: not liking the treatment model, or the way it

    was delivered.

    Fatigue, pain, mood and work status were no different between the two groups at the end of the

    study however the study was not large enough to show an effect.

    Our results show that this type of study is not feasible and EI was not acceptable to a lot of

    participants
     
  10. Keith Geraghty

    Keith Geraghty Senior Member

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    With regards to the publication plan, the research team has thus far presented the findings at two conferences (below) and are now preparing the manuscript for publication of the results in a scientific journal. The plan is to submit the manuscript in September and it is hoped therefore that results will be accessible in early 2017 (reliant on the manuscript being accepted for publication).

    Title: Early Intervention in Fatigue: A Feasibility study
    Authors: O’Dowd, H, Crawley, E, Hollingworth, W, Sterne, J, CollinS, Ingram, S, Montgomery;A, MacLeod, J.
    Conference: British Association for CFS/ME (BACME) conference, October 2013

    Title: Randomised controlled trial investigating the feasibility and acceptability of early intervention for fatigue in primary care
    Authors: O’Dowd, H, Crawley, E, Hollingworth, W, Sterne, J, CollinS, Ingram, S, Montgomery;A, MacLeod, J, Beasant, LA
    Conference: UK CFS/ME Research Collaborative Scientific conference, September 2014
     
  11. Countrygirl

    Countrygirl Senior Member

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    :mad:

    Double crossed by AFME again as they spread damaging misinformation to our GPs. What a disgrace they are!
     
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  12. Keith Geraghty

    Keith Geraghty Senior Member

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    they spent 250k and didnt even randomise the same number of patients to each arm of the RCT - there is no major publication, and the docs Ive seen are basic, researchers are struggling to get any funds, from £10k to £50k is a massive struggle and this £250k is a massive amount and Dr ODowd is now out teaching GPs and lecturing on ME/CFS - author of the PACE trial

    Again we are also back to conflicts of Interest - does Dr ODowd have a private practice or financial stake in promoting CBT?

    upload_2017-6-12_19-54-15.png
     
    Last edited: Jun 12, 2017
  13. Barry53

    Barry53 Senior Member

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    At least that culminating sentence strikes true.
     
  14. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    Recruiting people with fatigue? I didn't have fatigue in the early years. I actually did a lot of walking. I had to pace myself though and rest because of immune and neuro flare ups. Classic viral onset. I find the whole emphasis on fatigue to be problematic. How many illnesses could they be pulling in here, yet some people with actual ME might get missed (probably a good thing given the rubbish beliefs involved). I wouldn't even use fatigue to describe my illness now.

    Edit: This is just more evidence that Action for Me are not working to a patient agenda but something else entirely. If there's anyone on this forum still giving money to them, or anyone reading this still giving money to them, pull the plug for god's sake. Give money instead to Invest in ME, or the Open Medicine Foundation, or some other place with some actual understanding of this illness. One not geared to propping up a lobby of self-interested time wasters and careerists from entirely the wrong professions.
     
    Last edited: Jun 12, 2017
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  15. ladycatlover

    ladycatlover Senior Member

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    This sounds a bit like the Ladybird Book of Fatiguing Illness. Perhaps we should write such an illustrated book and flog it for proper ME research? I can just imagine some of the illustrations - poor patients lying prone in bed, then leaping up and running a marathon after a few Early Intervention sessions. Like the recent popular adult Ladybird books. Oh, I see they do one on Mindfulness! Might have to indulge. ;)
     
  16. Barry53

    Barry53 Senior Member

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    Just what I thought. Waiting for the Ladybird Book of Imaginary Illnesses to appear, by a well known author or two.
     
  17. Keith Geraghty

    Keith Geraghty Senior Member

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    The NHS NIHR spent £250,000 on this study and didnt even get a proper publication out of it. I applied for a small charity grant under £25k and I porposed a minimum of 2 publications, maybe even 3.

    ODowd said she would recruit 100 patients, she recruited 44, I could go to my local ME support group and recurit 20 in 1 day - what on earth stopped her from recruiting 100 - isnt she some clinical lead for a entire area of the South East?

    its rather shocking to me and to think she is giving online lectures to GPs to teach them about ME/CFS - well I can only imagine with trepidation, what those online seminars might involve.
     
  18. Esther12

    Esther12 Senior Member

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    And Action for ME put her in charge of that employment project they're not promoting to the DWP, despite never having shown it's of any use. Don't see how that could go wrong.
     
  19. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
  20. Valentijn

    Valentijn Senior Member

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    Or they're incredibly stupid/gullible, and unable to assess research papers or research proposals. In which case they still shouldn't be representing patients or getting any funds to pass out :p
     

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