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Esther Crawley - (what drives her) plus quotes

Discussion in 'UK clinics and doctors' started by Sly Saint, Nov 20, 2017.

  1. Barry

    Barry Senior Member (Voting Rights)

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    Well let's hope that research into mental health problems does actually confine itself to research into mental health problems, and nothing else. Researching into one condition, when it is actually an entirely different condition, can be very problematic, especially when the researchers make huge presumptions in their research about what they believe the condition is.
     
    Last edited: Nov 7, 2021
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  2. Sean

    Sean Moderator Staff Member

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    Just a continuation of what they have been doing for the last 3 decades.
     
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  3. bobbler

    bobbler Senior Member (Voting Rights)

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    Hello Skycloud, I'm new so hope I do alright with this first comment.

    Do you really think that her sleep therapy would work, particularly on teenagers? I'm old enough to remember that every few years for decades there have been articles/research studies hitting the news talking about moving the school day back because teenagers need more sleep/have different sleep patterns. It might make the people she has been selling to feel happy promising to 'fix this' (schools, parents) by forcing them out of it, but I can't see it helping - certainly in most who are ill with ME/CFS.

    From personal experience (and this is where I'm curious if this is where there are different 'types' because its a no-brainer with me and some others I've come across) as a PwME even exercise - which did become very clear after trial and error and certainly in the medium-long term after giving it a 'red hot go' - is more convincing as worth trying than messing with sleep/rest. It might be an individual perspective as I had for most of my years of being ill been in a situation where enough rest was never possible so someone waking you and never ever letting you get the sleep you needed was the most destructive and long-term damaging thing (and it felt it at the time). Someone else messing with it, or yourself trying to almost immediately made the situation worse on that symptom (you get so tired by the manufactured 'allowed times' that you either can't sleep well or it becomes unrefreshing, and it never ever reverts to those times just builds up even more as deprivation). And on overall health. It was disastrous.

    I can see that one would be an easy sell for a person who's not needing to go direct to the patient but their parent and schools who don't have the illness - 'we'll just train their sleep for you' etc.
     
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  4. Skycloud

    Skycloud Senior Member (Voting Rights)

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    Hello @bobbler and welcome to the Science4ME :).
    Firstly I should say that I don’t have a medical or science background, so I learn from others here.

    I’m sceptical of any claims that E.Crawley makes for her work as the research she has published reveals problems under scrutiny. She has a track record of producing flawed quality research and spinning results and ignoring legitimate criticism. The comment I made referred to a small bit in an article that was just a piece of promotion for her work and clinic and there’s no evidence in it. Her research and methods do speak for themselves though, and there is information about it on the forum.

    My post you’re referring to was made a long time ago so hard for me to think back. I think I was generally sceptical but conceding (in a flippant manner) that maybe some teenagers with fatigue did actually report being helped. But even that isn’t a straightforward thing to claim because there is no evidence given about those patients mentioned in the article to support what she says. For all we know they may not have had any other symptoms than fatigue, so shouldn’t be assumed to be same as ME/CFS. There are other possible issues too, just as for examples : some teenagers might just tell everyone what they want to hear, or it’s their wishful thinking, or perhaps the improvement would have happened anyway. So Crawley’s claim in the article can’t be taken seriously to mean anything about the wider group of teenagers or adults with ME/CFS. The place to look for it is in her research, and it’s a long time since I read any of that.

    I’m old enough to remember this too. Not having to struggle to get 2 of my children out of bed when they were teenagers would have been wonderful! (They don’t have ME). I really don’t know if that research into healthy teens would say anything useful to compare with teens with ME/CFS.

    I personally think, as a non medical person, that if you are ill and your body sleeps more then that is what your body needs, provided other bodily needs are met. I know that’s not possible for a lot of people. I’m so sorry your experience with sleep therapy made you worse. I hope you have found ways to manage your ME symptoms that work better for you.
     
    Last edited: Nov 29, 2021
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  5. bobbler

    bobbler Senior Member (Voting Rights)

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    Surely they cannot justify not having a register to check for how many needed emergency or non-emergency surgery for a set time longer than that? I say this assuming that ethics mean they cannot recruit those who would obviously need an appendectomy relatively urgently in that 6mnth space of time anyway. In which case the timeframe being measured doesn't cover when any real impact would actually occur.

    Otherwise surely someone will have to say it is little more than creaking people through a 6mnth wait by pretending they are doing useful therapy. Without a control that has the same 'boosterism' they are basically comparing those who are worrying they have to wait and it might burst vs those who are being told 'well done on your hard work, you don't need an operation it's going so well' all the way up until the end of six months.
    Thanks Skycloud. Yes I realised it was old only after posting my reply (I was looking at the thread because someone I knew had a relative whose child had been offered a referral there, and asked if I knew about it) - and can completely relate to the feeling of it being taken out of context somewhat as remembering back years ago to what you were thinking and referring to is impossible. So I appreciate your reply.

    Indeed it is a stonker of a sales idea from her (ice to eskimos) but no idea if it even works with well teenagers (until they grow out of it), and no idea what the 'fatigue excl ME/CFS' is like and if it is helped by this.

    I guess we will always be clueless as no you don't get/can't take much from her research.
     
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  6. Skycloud

    Skycloud Senior Member (Voting Rights)

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    That’s ok, bobbler. I just hope I make some sort of sense. My brain doesn’t have much stamina these days and it quickly fails me.

    If your relative hasn’t read it I suggest they read the new NICE guideline. Clinics should now be following that. Perhaps you already suggested this. As well as content generally relevant for the care of all patients it has a section specifically about children and teens - it’s useful for parents to read because it’s not clear yet how well clinics are implementing it. I don’t know what the Bath and Bristol paediatric service are doing now but I’d want to know what they should be offering and what they shouldn’t.
     
    Last edited: Nov 29, 2021
  7. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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  8. Barry

    Barry Senior Member (Voting Rights)

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    And this reply further down ...
    https://twitter.com/user/status/1471880584146345987


    Seems to me a very salient point, about the (almost certainly deliberate) conflation between definition versus classification as an excuse for the 2007 GDG excluding the WHO classification. But deliberate conflation, when it suits their agenda, seems to be one of the go-to dirty tricks of the BPS regime.
     
    Last edited: Dec 19, 2021
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  9. Barry

    Barry Senior Member (Voting Rights)

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    Was the WHO classifications coding mandatory for the UK back when the 2007 guideline was being developed?
     
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  10. Arvo

    Arvo Senior Member (Voting Rights)

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    Yes.

    • In 2004 a WHO communication stated that if a country accepts the WHO Regulations concerning nomenclature (which the Uk does), then that country is obliged to accept the ICD classification.
    • In NICE's own Communications Progress report of September 2002 Anne Toni Rodgers, then one of the Directors of NICE, states: "The ICD-10 classification has been used as a basis for the new Institute classification directed at the informed reader. ICD-10 is used within the acute sector of the NHS and classification codes are mandatory for use across England."
    • A 2007 NICE Taxonomy did list (ME) CFS as a disease of the Central Nervous System
    You can confidently remove the "almost", that is exactly what they're doing here, it's a smokescreen.


    This is just a slice of a much larger scandal that I've been working on the past month. ( :emoji_warning:So know that you're not looking at a complete picture.)

    But yeah, the NICE '07 Guideline Development Group did deliberately and knowingly not adopt the WHO classification of ME, because some of them "felt that to do so did not reflect the nature of the illness", and it "risked restricting research into the causes, mechanisms and future treatments of CFS/ME."

    The first, an excuse, is bs as they had to follow coding, regardles of how they were "feeling", and the second (an actual reason) is mighty interesting given that e.g. the patients, GP's, nurse and dietician on the GDG would not have objected on such grounds, and Esther Crawley, who does not answer the question in the sound clip above because she knows full well it's inexcusable what she's trying to pull off,, received 2.3 million pounds in research grant awards between 2006 and 2016*, making her the second-best paid researcher after Peter White (3.5 million). (Together that comes to an amount of 5.8 million pounds between 2006 and 2016, which is more than than the other 10 people on the list combined, 4.37 million.)


    *AfME's 2016 report on ME/CFS funding
     
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  11. Barry

    Barry Senior Member (Voting Rights)

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    These BPS psychiatrists' "science" is all about feelings isn't it! (Something else for them to conflate if they read this).
     
  12. rvallee

    rvallee Senior Member (Voting Rights)

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    Technically correct, this is exactly what happened, just the other way around. Exactly as they were warned by people who actually understood this. Hence why there technically should not be a "feelings" exemption to this stuff, and yet here we are.

    It's unfortunate that there is a "feelings" exemption to disease classification and coding, as there must be, otherwise this would have been very wrong. Which it was! Funny how it works, how rules, even laws, are just a bunch of words unless someone acts on them, and people tasked with enforcing do just that, and not, you know, not that.
     
  13. Arvo

    Arvo Senior Member (Voting Rights)

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    I'm having a poor cognitive day, what do you mean with that it happened "the other way around"?
    And who are "they" that were warned by people who understood what exactly?

    (I'm sorry if this is obvious, I'm just not getting it through my brain in a way that makes sense.)
     
  14. Ash

    Ash Senior Member (Voting Rights)

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    This is the :heart: of the matter
     
  15. rvallee

    rvallee Senior Member (Voting Rights)

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    Yes, not as clear as could be. I meant that the alternative behavioral definition they pushed forward did not "reflect the nature of the illness" and "restricted research", as they claimed. Their definition really did what they asserted an accurate definition they rejected, based on feelings, would do. Using a proper definition that recognized the ICD classification in neurology would not have done that, while the miscategorization into mental illness absolutely did. So what they warned about happened, because it's what they made happen, but the other way around: they caused this, while claiming to prevent it.

    The people who warned this were the patient representatives and charities and the few experts present for the 2007 NICE guidelines process who said just that. And in general. Including, since then, the NIH and the IOM, who phrased it as "impairing progress and causing harm". And us. Basically all of us. We've been telling the BPS ideologues all of this for decades, long before the 2007 NICE guidelines happened.
     
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  16. Arvo

    Arvo Senior Member (Voting Rights)

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    Thanks for the clarification @rvallee , and yes, indeed.
     
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  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    job ad
    Consultant Senior Lecturer/Associate Professor in Respiratory Child Health
    University of Bristol - Bristol Medical School

    https://www.jobs.ac.uk/job/CSJ418/c...sociate-professor-in-respiratory-child-health
     
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  18. Amw66

    Amw66 Senior Member (Voting Rights)

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  19. Sid

    Sid Senior Member (Voting Rights)

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    That was my first thought. Whole new cohort of ppl to terrorise with GET.
     
  20. Barry

    Barry Senior Member (Voting Rights)

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    Real professional scientists would recognise and acknowledge when they get it wrong, because first and foremost their top priority is supposed to be welfare of patients, not their own career progressions. I don't have a problem with people standing their corner when it is reasonable they might be right; science (as do so many things) relies very much on the healthy cut and thrust of robust debate, and not giving way at the first objection. But if the outcome of that makes it clear you are simply wrong and need to back off and rethink, then you have moral and professional duty to do so, else you become a ball and chain on the search for advances in patient care.
     

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