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Dr Esther Crawley: Transcript of Presentation: The Future of Research in CFS/ME

Discussion in 'General ME/CFS News' started by Dx Revision Watch, Oct 19, 2010.

  1. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    In March, this year, Dr Esther Crawley* gave a presentation to a Dorset patient support group entitled “The Future of Research in CFS/ME” [/B during which she also spoke on XMRV research and delivered some very controversial comment on the operation and findings of the Whittemore Peterson Institute (WPI).

    It is understood that the presentation was attended by Annette Brooke (MP for Mid Dorset and North Poole) and Vice-Chair of the re-formed APPG on ME and also by Bournemouth based Lightning Process practitioner, Alastair Gibson (Withinspiration), who is a collaborator in the research team for the Bath/Bristol LP pilot study in children, for which Dr Crawley is lead researcher.

    Published today, on ME agenda, is an unofficial transcript that has been provided to me to supplement the partial transcript that was first published on ME agenda, in August. The transcript includes the text of most of the PowerPoint slides that were used during Dr Crawley's presentation.


    The Tiny URL link for this post is: http://tinyurl.com/Crawley-Presentation-March-10

    The WordPress Shortlink is: http://wp.me/p5foE-3ay


    Dorset CFS/ME Society
    Annual Medical Lecture

    27th March 2010

    The Future of Research in CFS/ME

    Esther Crawley


    It’s a great pleasure to be here, everybody, and I’m really glad actually that my talk actually fits in very nicely with what William’s just said. Phew!

    I’m going to be talking a lot about the collaborative research and the first half of my talk actually was given to the MRC Working Group at the end of last year. So you’ll actually see what we were talking about where the MRC gathered lots and lots of researchers together to discuss a way forward with chronic fatigue [sic] and I did the talk on epidemiology.

    And, actually, on a sort of personal level, [I am] particularly proud because my gorgeous son is sitting in the front row, grinning from ear to ear about his Mummy, so that’s a great joy and it’s lovely to see so many of you again.

    Slide 1: The future of research

    • Providing services and treatment
    • Epidemiology
    • Different disease types
    • Evaluation of treatment
    • Impact

    • Understanding the cause
    • Genetics and GWAS
    • Infection and XMRV?​


    So in the talk today, I’m going to talk about the future of research and I believe there is strongly… that there are two really important arms for research in chronic fatigue syndrome. The first is about how we [are] actually, really quickly, going to change what happens to patients and carers and, to do that, we need to understand much more about the epidemiology, and my children asked me what that meant this morning, and that’s the study of populations. We need to understand more about who it affects, how to treat it and about the different disease groups, because you all know that there are different types of chronic fatigue syndrome.

    And the second arm of research is the arm into aetiology: what causes chronic fatigue syndrome. And, of course, that’s the bit that we researchers really enjoy doing. That’s the bit that makes us excited. I don’t actually agree that research is demeaning. I think that I’ve got the best job in the world, actually.

    And the aetiology and the pathogenesis and my PhD was genetics. That’s what really excites us. But, realistically, it’s not going to have the same gains at a patient level or a population level as understanding more about the illness.

    And, realistically, the aetiology research has to be done on a background of understanding much more about what this illness is, otherwise we’ll get the wrong answers.

    So I’m going to talk about both.

    And I couldn’t resist talking about XMRV. I think we have to know about what’s actually happened and I will discuss that as well and what the implications are.

    So, the epidemiology. What is this illness? Who does it affect...


    Read the rest of this transcript >>


    *Dr Esther Crawley

    Dr Crawley, FRCPCH, PhD, is a Senior Lecturer at the University of Bristol, a Consultant Paediatrician and clinical lead for the Bath CFS service. Dr Crawley’s specialist CFS service for children and adolescents is reported to be the largest regional paediatric service in the UK and also provides services nationally.

    Dr Crawley had been a member of the NICE CFS/ME Guideline Development Group and gives presentations around the NICE guideline CG53 and the CFS/ME Clinical and Research Network.

    Dr Crawley had chaired the CFS/ME Clinical Research Network Collaborative (CCRNC), now reformed under the new name “BACME”, for which Dr Crawley continues as chair.

    Dr Crawley is a member of the MRC’s “CFS/ME Expert Panel”.

    In the last couple of years, Dr Crawley’s research team has been awarded considerable sums of funding for CFS studies and Chronic Fatigue studies in children – including a 873,579 NIHR Clinician Scientist Fellowship award, last year. She has also received funding from patient organisation, Action for M.E. (49,650).

    Grants awarded to Dr Crawley during 2007-09 here: http://www.bristol.ac.uk/ccah/grants/

    [1] Radio 4 Case Notes: Dr Crawley on CFS clinic approach, November 2007:
    http://www.bbc.co.uk/radio4/science/casenotes_tr_20071106.shtml

    [2] RNHRD Bath Chronic Fatigue Syndrome/ME Service for Children & Young People:
    http://www.rnhrd.nhs.uk/departments/chronic_fatigue_syndrome_children.htm
  2. fred

    fred The game is afoot

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    Thanks for this, Suzy.

    A quick scan found this interesting quote. I am not sure which disease she is studying but I am sure that it is not ME.

  3. fred

    fred The game is afoot

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    Please don't say that the UK Medical Research Council is actually going to give this woman 2.5 million for a genome wide association study on ME.

    It's official. ME will be cured by getting patients to spit in a pot. Simples.
  4. Riley

    Riley

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    I remember reading some of this a while back. Her attacks on the WPI are truly bizarre.
  5. Min

    Min Senior Member

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    Which pot shall I spit in? or will a bit of advice about sleep cure someone who's had severe ME for 24 years as fast as it miraculously cures the children she claims had ME.


    Anyone who was responsible for the NICE guidelines on M.E. should be hanging their head in shame, not being given grants for further studies into an illness they haven't a clue about
  6. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Yes, I published the latter half of the presentation in August - this is the full transcript + text of slides.

    I'm given to understand that Dr Crawley has been made aware that the WPI moved into their premises shortly after she had given her presentation.
  7. fred

    fred The game is afoot

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    If you extrapolate 4.7% to the total population, you get over 3 million people. Methinks that either her maths or her diagnostic criteria (or both) are screwed.
  8. fred

    fred The game is afoot

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    7,000 out of 250,000 estimated ME patients equates to just 2.8%. That's not a great hit rate. And how much does it cost to see less than 5% of all UK sufferers each year? Wouldn't this money be better spent on biomedical research that may lead to efficacious pharmaceutical interventions that can be prescribed by existing GPs and infectious disease specialists, and without the need for additional support infrastructures ? That is a rhetorical question.
  9. fred

    fred The game is afoot

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    Oh, really? Aetiology is not going to help us at all? Looks like the WPI and the NCI and the Cleveland Clinic and the FDA and the NIH are all on the wrong track. Shucks.

    I think that one is going to need a little more work, Esther dear.
  10. urbantravels

    urbantravels disjecta membra

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    She has the "insult" part down pretty well, though.
  11. Orla

    Orla Senior Member

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    Fred maybe the patients spirits at least could be helped by being allowed to spit elsewhere other than in the pot (i.e. at some of these people)? :D

    I have heard Esther Crawley doesn't distinguish between Chronic Fatigue and CFS.
  12. Desdinova

    Desdinova Senior Member

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    Yes the just practice 'Good Sleep Hygiene' and your pesky Fatigue will just fade away. What a joke if simply following proper good sleep hygiene solved those several children "for several of them" then they most certainly did not have ME/CFS. I saw a sleep specialist who started to give me the good old sleep hygiene routine. I cut her off by stating the steeps to good hygiene, (she was surprised that I knew them) and telling her I already follow them but they don't work in alleviating my symptoms. Her reply was Are you sure, do you really follow them are you really sure?
  13. lancelot

    lancelot Senior Member

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    The UK is a real hindrance to solving ME/CFS. There is never anything good coming out of there.
  14. urbantravels

    urbantravels disjecta membra

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    The *patients* in the UK, on the other hand, are setting a fine example for the rest of us in tireless advocacy.

    It might be that the more open oppression they experience galvanizes the patient community more, plus the unifying experience of everyone having to deal with NHS (versus the capitalistic paradise of the US where we all just have to fight individually with our individual health insurers, if any.)

    Something good could come out of the UK - a giant scandal about how patients with a physical illness were denied proper medical care and benefits for so many years based on no sound science. It would be so lovely to see the vicious tabloid press of the UK decide this was as big a deal as, say, members' expenses.
  15. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Yes, she seems to use the terms "fatigue", "chronic fatigue" and "chronic fatigue syndrome" indiscriminately. One of the cases she talks about in the BBC Radio 4 "Case Notes" broadcast on her approach to management of CFS was that of a child with fatigue following head injury.

    Here's the URL for the transcript of the BMJ Learning Module podcast:

    http://www.forums.aboutmecfs.org/sh...dy-on-Children&p=102372&viewfull=1#post102372

    Transcript of Dr Esther Crawley / Professor S Wessely
  16. SarahTees

    SarahTees

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  17. fred

    fred The game is afoot

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    Crawley on BBC Radio 4 in 2007.

    http://www.bbc.co.uk/radio4/science/casenotes_tr_20071106.shtml
  18. garcia

    garcia Aristocrat Extraordinaire

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    Esther "makes my skin" Crawley
  19. Marco

    Marco Old blackguard

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    Yeah!

    CREEPY CRAWLEY!!

    Well, at least I can thank Esther for making me feel like an 8 year old again.:D
  20. lancelot

    lancelot Senior Member

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    Their government run media and government run healthcare under the control of psych's will easily crush whatever CFS/ME scandal comes out just like they have always done.

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