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Recording of Esther Crawley inaugural lecture on February 24

Discussion in 'General ME/CFS News' started by Dolphin, Feb 25, 2017.

  1. Joh

    Joh Senior Member

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    Hi @Chrisb, Don't know the name, but I read about one researcher who investigated XMRV. When s/he wasn't able to replicate the findings, s/he allegedly received threats from patients and left the field. Don't know if that counts as leaving, because I believe these XMRV guys were only hired for that one task. But it served as an example of ME-sufferers chasing away researchers in the media anyway.

    Thanks for the transcript, @AndyH, so much work! Read parts of it and it is so sickening, I don't have English words for it.
     
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  2. mango

    mango Senior Member

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    :rofl: :rofl: :rofl: Spot on. Thank you so much for giving me the best laugh I've had in a long while..! :lol:
     
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  3. Dolphin

    Dolphin Senior Member

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    https://www.theguardian.com/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis

     
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  4. Joh

    Joh Senior Member

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    Yes, thank you Dolphin, don't know how I could possibly forget it was part of this famous article. This article manages to make me laugh out loud, every time I read it.
     
    Last edited: Feb 27, 2017
  5. AndyH

    AndyH

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    I wouldn't like to suggest that CFS can be cured in six months. However, she identifies her clinic as a 'fatigue clinic and I, like many others, believe that she's diagnosing other illnesses for which fatigue is a symptom as ME.

    Her 2014 paper on PRS does of course, insists on considering PRS for those with a low SF36 score, which is a sad state of affairs for those with severe ME. It was pointed out to me that not once has she referred to ME in her lecture, other than in the title. She refers to CFS.

    She has quoted publically on a number of occassions, the TV, radio and this lecture, that the children going to her clinic only manage a day or two of school a week, so only the most severely affected receive treatment. Clearly, those are not the most severely affected, so there's an issue with diagnosis.

    She quoted in this lecture how those in the ALSPAC database are less severely affected than those she sees in clinic, so given her seemingly far too relaxed diagnosis of ME, one has to wonder if those in the ALSPAC database even have PEM for example. I couldn't identify a field that might indicate it does but that doesn't mean one doesn't exist of course.

    It is quite a remarkable situation and her diagnosis is seemingly a very different approach to diagnosis than the rest of the world. Her definition of severe ME seems to be more akin to the worlds definition of mild or perhaps moderate ME and one only has to read the function ability sclaes, including one from her own charity, AYME, to see from her quotes, that this might be true.

    Those more unwell, or with symptoms unexplained by her diagnostic criteria, (presumably the RCPCH guidelines of three months of fatigue and one other symptom as quoted in at least one of her papers), such as tube feeding or parlysis are patients perhaps given a differential diagnosis due to her considering the inclusion of MUS.

    Alan Light's comments on dysfuctional TRP receptors being present on all cells in the body explain the many and varied symptoms sufferers experience surely means that when it comes to ME, there are no MUS, and practitioners insisting on MUS should instead perhaps be backing up their claim for any MUS against such evidence. This same idea that all symptoms may be explained in ME is also of course supported by the many papers demonstrating the physical dysfunction that prevents mitochondria from creating aerobic energy.
    A lack of medicl professionals knowledge gives rise to MUPS, not a lack of medical explanation.

    The Oxofrd criterian and the RCPCH guidelines very much need to be put with the history books to put a stop to those diagnosing ME without even the most basic cardinal symptom such as PEM and six months is clearly needed for a diagnosis. MUS have no place in a diagnosis of those presenting with ME symptomology. Six months is the time period that Crawley suggests 60% of children will recover from ME in; a time period curiously the IOM were very clear about being needed, after having reviewed 25,000 ppapers, to preclude other illnesses in the diagnosis of ME. Recovery is possible from other illnesses in six months. EC quotes 30% having depression. Perhaps that's all most of those have. I have yet to hear of more than two children, even with severe ME, who are depressed, so I personally doubt that 30% of ME sufferers have depression but I don't know the huge numbers of patients a doctor would.

    I very much agree that her diagnosis is potentially a huge obstacle in the way of progress and the treatment of ME, particularly for children. If an independant assessment of the diagnosis of her patients were possible, this could of course be determined.
     
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  6. AndyH

    AndyH

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    It was a public lecture, so presumably they wouldn't mind forwarding them ;)
    I'll ask round and see if anyone can send me pics.

    The slide re accusations of 'cyber stalking' quoted paragraphs that were clearly quoted word for word from wiki even with the inclusion of reference to California. i.e.:

    "Cyberstalking is the use of the Internet or other electronic means to stalk or harass an individual, group, or organization.[1] It may include false accusations, defamation, slander and libel. It may also include monitoring, identity theft, threats, vandalism, solicitation for sex, or gathering information that may be used to threaten, embarrass or harass.

    Cyberstalking is often accompanied by realtime or offline stalking.[2] In many jurisdictions, such as California, both are criminal offenses.[3] Both are motivated by a desire to control, intimidate or influence a victim.[4] A stalker may be an online stranger or a person whom the target knows. He may be anonymous and solicit involvement of other people online who do not even know the target."
     
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  7. Dolphin

    Dolphin Senior Member

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    The person who sent me the recording didn't send on any slides.
     
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  8. AndyH

    AndyH

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    On the radio, EC quote the biomecial research as small unreplicated studies and aldo that she found them confusing.
    Besides the fact that not all biomedical studies have been small, she fails to identify that many of the studies, approached from different angles, have lead to the same conclusion... that there's a physical dysfunction that prevent aerobic energy generation and that many scientists have stated that exercise is harmful, dangerous or similar. So regardless of replication, even the different approaches are coming up with the same findings. I think it is negligent to dismiss so much evidence but that's just my opinion.
    On the other hadm EC has take a small dutch unreplicated study and promoted it as providing full recovery for 2/3rds of children at six months.
    I have to say that I can see no acceptance of the biomedical science from EC. At the very least, she should be identifying that harm is a risk but she claims that no harms are reported, which, given the number of complaints against her, cases patients have told of, the lack of research reporting of those failing to complete trials due to a decline and a lcak of reporting of adverse effects other than serious adverse effects, It would seem that much of the harm is hidden rather than not known. I guess EC refers may perhaps be referring to harm being reported as harm being reported in published research rather than harm reported by patients to clinicians or the GMC
    .
     
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  9. Esther12

    Esther12 Senior Member

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    I'm certainly not saying we shouldn't criticise Crawley for what she has said and done, just that it's best to avoid making claims that go beyond the quotes we have from her. It seems likely that she's worse than she says she is, but when so many people seem to want to find any reason the can to dismiss patients concerns it seems best to play it safe rather than take a guess about, for example, what's motivating her.
     
  10. AndyH

    AndyH

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    Yes. Got that. Thanks, which is why I added some info in support of the comments made by the person you had concern for.
     
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  11. Chrisb

    Chrisb Senior Member

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    @Joh @Dolphin I stand corrected - thanks for that. The collective memory of this group is invaluable!

    I strongly suspect that part of the reason for the mutual antipathy is her continual assertion that social adversity and lower socio-economic class are predictors for the condition. There may once have been justification for this sort of work to counter the yuppie flu label, but its days are long gone. It is presumed that she or her acolytes read these pages. They (these pages) do not give the impression that social adversity or lower socio economic class were a causative factor in the illness. So what is her point?
     
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  12. user9876

    user9876 Senior Member

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    I think objections are more general. Her work is just not very good. For example, in her latest trial protocols she has no objective measures and the primary end-point matches the point of maximum benefit with the fitnet trial she is trying to replicate. No justifications are given and so it looks like an attempt to get success at any cost. With her study on the ALSPAC database she has a weird reasoning chain where she measures (very crudely) fatigue calls that CFS then asks if there is depression to see if people with CFS are also depressed. But depression can cause fatigue so her chain of reasoning is simply wrong and hence the figures she gives are misleading.
     
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  13. Chrisb

    Chrisb Senior Member

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    @user9876 I agree entirely with your points that in general the science often seems poor, indeed some might think it not to be science at all - in some usage of the word.

    I was merely questioning the wisdom of antagonising a large group of people by asserting that their ill health is likely to be associated with wholly irrelevant factors. It is much safer to make assertions about matters on which people might have no direct experience or knowledge if one wishes to maintain ones aura of superiority.
     
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  14. lilpink

    lilpink Senior Member

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    Kind of chimes with Prof Edwards recent observation.
     
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  15. lilpink

    lilpink Senior Member

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    It would be useful to know whether or not EC is anywhere near the NICE review when the time comes ( I imagine 'the time' might have already arrived behind the scenes?). *If* she is, then it makes it more imperative for charities like the MEA and MERUK to overtly distance themselves from the CMRC. It's not difficult to guess the line of persuasion EC would take in terms of what a new Guideline should say (if it ever got that far and I doubt it will) which in theory ought to be at odds with what the MEA and MERUK would want. I still cannot get my head around their collusion. *If* EC is to be anywhere near the Guideline then I daresay she will use the CMRC and MEGA as her kosh... her 'evidence' that she has status both in terms of patient charities and in terms of research 'initiative'. OMEGA is fundamental to creating a documented challenge to that perception.

    https://www.change.org/p/opposing-m...autopublish&utm_term=des-lg-no_src-reason_msg
     
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  16. JoanDublin

    JoanDublin Senior Member

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    You're more than welcome :D
     
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  17. Valentijn

    Valentijn Activity Level: 3

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    I bet she finds a lot of things to be confusing :rolleyes:
     
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  18. Solstice

    Solstice Senior Member

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    Like why people push back when you try to hurt them.
     
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  19. Sean

    Sean Senior Member

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    That is what they learned from PACE: Don't use objective outcome measures, they might contradict your narrative.
     
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  20. A.B.

    A.B. Senior Member

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    Their research methods organically grow into the best strategy to optimize for placebo effects.
     
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