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David Tuller: My brief encounter with Prof Crawley

Discussion in 'General ME/CFS News' started by Countrygirl, Nov 20, 2017.

  1. Countrygirl

    Countrygirl Senior Member

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    I will forward Prof JE's message and suggestions.

    Thank you!
     
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  2. Countrygirl

    Countrygirl Senior Member

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    Just to confirm I have passed on Prof JE's message to DT.
     
  3. RuthT

    RuthT

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    Given truth & fair comment is a defence to libel or slander, I say publish/speak truth about questions of methodology & ethics & let her sue. Unlikely to go to court, as costs are huge & stakes high: tbh do think will not fare well if subject to scrutiny in court, as seen in the recent claim re income insurance. Appropriate to be rigourous & factual re what is said or written in relation to work by Prof Crawley as any other.
     
  4. Demepivo

    Demepivo Dolores Abernathy

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    Mark Payne the pyschologist will tackle any ailment under the sun, ME/CFS part of a very ling list.

    Possibly a member of Esther's BACME group for CBT/GET professionals
     
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  5. Countrygirl

    Countrygirl Senior Member

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    Replying to myself, but I think DT has sent only a section to @Jonathan Edwards . Hopefully, that will be corrected asap.
     
  6. Countrygirl

    Countrygirl Senior Member

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    A few more brief notes from the lecture

    CF and ME is the same illness.

    Patients like to call it ME.

    Little is known about it. (especially if like me you never read anything about it………no, no, she really didn’t say that!)

    Main symptom debilitating fatigue and some other symptoms like memory problems and PEM.

    In 2007 (when St Esther burst onto the scene) people didn’t believe in ME and certainly didn’t believe it happened in children.

    No one then knew how to treat it.

    Back in 2005 48% of doctors in the Exeter health authority did not know how to diagnosis it.

    2011 still a great lack of knowledge.

    GPs and doctors in general very judgemental and patients felt abandoned.

    Early study showed how common it was.

    1% of secondary children missing a day of school a week. (Didn’t say why………….)

    She was told it did not exist in primary school children.

    She uses the ALSPAC (Avon Longitudinal Study) and the children are now 27.

    ME children are too sick to turn up at clinics.

    Med students think it just affects white middle class children, but this isn’t so as drug use, poverty increases the risk.

    Adversity increases the risk, but such children don’t make it to clinic.

    It is equally common in boys and girls in the under 11s but 3 times more common in girls after 13.

    2% of children have ME.

    1/1000 are housebound.

    It is not one illness and there is a need to study genetics.

    Treatment doesn’t help one third.

    There are three different groups.

    What increases risk? Followed by remarks about a new Harvard analysis she is using. Discussed confounding and common effects.

    Most prominent risk factor is family adversity

    Possible causes: abuse; trauma; anxiety; depression; poor sleep and puberty.

    BMI is not a predictor.

    BP drops in children with ME.

    Life events is the predictor up to the age of 13.

    Very important: children who develop ME sleep less before they get it.

    Talks about her three trials

    CFS has a huge impact on children.

    30% have depression and 40% have anxiety.

    Parents likely to split up and mums have mood disorders.

    They are very likely to use health services before they develop ME.

    Mentions just finishing recruiting for Magenta…….it is the largest trial for children and will show the cost effectiveness of CBT.

    GET is not harmful to people with ME. Children want GET.

    Reduce boom and bust to base line.GET measure only number of steps but activity management records everything.

    1/3 of ME children do more rigorous exercise anyway than their fit counterparts.

    Mums and kids say activity management is great.

    GET has wonderful results.

    Screen shown with comments by children so grateful for the effects of GET. Last statement of a child says it means he can be with his friends again. Esther quite overcome with emotion at this point…….such gratitude and the thought of children recovering with her treatment………….brings a lump to the throat.

    There is only one complaint by the children: there isn’t enough exercise.

    After one year the results are excellent and there is no harm to any child. (well, apart from those she has paralysed)

    Photo of poster pops up on the screen. It is the STOPGET poster.

    Shocking! Activists trying to stop her trial.

    But, I just carry on anyway.

    It is just their mistaken views on exercise.

    FITNET is a solution to a big problem.

    The Lancet published the Utrecht papers in 2011 where 66% got better with CBT.

    75% were back at school within six months. (Figures don’t tally???)

    Parents want FITNET not activity management. They want the most intensive therapy for the children.

    We want to deliver round the UK.

    Quote from BMJ flashed up on screen. Dangerous activities in life………….most dangerous being a researcher into ME. (Brave, brave Esther facing all those bedbound patients)

    LP Smile.

    Esther thought it was a hippy, expensive scam.

    Children didn’t want to do it.

    But it was successful.

    Finished up with ‘I have learnt a lot about trials and a lot about activists’.

    Applause from impressed audience.

    Any questions??

    Oh! David?

    Hi Esther……………………………………..
     
  7. MEMum

    MEMum Senior Member

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    Thanks so much for your excellent summary @Countrygirl, so pleased you and friend were able to go. From memory you have been ill with ME for many decades and are probably not the archetypal activist!
    Go Countrygirl!
     
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  8. Countrygirl

    Countrygirl Senior Member

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    At my age, I am proud to be called an 'activist' by Esther. Made my day!. :):angel:
     
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  9. Countrygirl

    Countrygirl Senior Member

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    Right, now one of the mums with whom I am in contact has just contacted me this morning.

    While she was out her sick teenage daughter, she tells me, was hassled 'every thirty minutes on the phone' by one of EC's team to try to make her agree to be a participant in one of her trials. Both child and mum did not want to be involved and wanted to be left alone.

    Is it ethical for EC's team to hassle a sick child in this manner?

    Now there is a new development.

    The child's paed is saying that if the child does not recover by January 2018 (she has been ill for 18 months) she is going to be referred back to EC and she will be made an inpatient and will have to undergo 'intensive therapy'.........just like the other child who was left paralysed under EC's guidance.

    Now compare this with the description of treatment by EC above.

    How do we avoid this?

    Mum is worried sick and she is alone.
     
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  10. MEMum

    MEMum Senior Member

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    Horrific. These activities need to be made known, but how?
     
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  11. tumbleweed

    tumbleweed

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    @Countrygirl

    Perhaps, ask the mother and the child if they would be prepared to go public, and ask David Tuller if he is prepared to be involved and write up articles on it. (I'm NOT suggesting going to the Daily Fail or any other newspaper, online or off.) If threats are being used they need to be stopped before anything serious happens.

    Can the Citizen's Advice Bureau help? I would guess that paying for a lawyer would be out of the question?
     
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  12. NelliePledge

    NelliePledge plodder

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    Tymes Trust are the best people to advise them. Maybe get an opinion from Dr Speight?? If they need help with a lawyer I'm sure some folks will contribute a few quid through crowdfunding.
     
  13. Countrygirl

    Countrygirl Senior Member

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    I will ask about DT, but Mum is very vulnerable and she would quite rightly fear reprisals from the doctors involved. I really don't think I would want to put a mum with a number of children for whom she is solely responsible through that stress tbh.
     
  14. Deepwater

    Deepwater Senior Member

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    Absolutely agree with this.
    I also wonder whether any action would be taken if the mother simply moved the child into the care of a better informed paediatrician. Is sectioning being threatened at this juncture, or merely the normal sort of doctor's orders?
    It's barbaric, it really is.
     
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  15. tumbleweed

    tumbleweed

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    Fair point. Perhaps DT could write about the situation but keep the participants anonymous?
     
  16. Countrygirl

    Countrygirl Senior Member

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    I put her in touch with both months ago and they were both very helpful; however, neither can dictate how the child should be treated. That is up to the GP and the consultant.

    She also sent the Purple Book by CS to the GP, who was annoyed to be sent information about something he knew nothing about. I doubt he read it.

    'All the doctors' inform her that ME is psychiatric.
     
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  17. Countrygirl

    Countrygirl Senior Member

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    What has happened with other children is that the the child is taken without parental consent into a hospital and is subjected to intensive physiotherapy with disastrous results. Meanwhile, the parents are denied access.

    Two others I know were placed in a locked ward and, although severely ill, were told they could only eat if they cooked their own meals. They couldn't.

    The parents were only allowed to visit on Saturdays.
     
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  18. Countrygirl

    Countrygirl Senior Member

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    I think using the ruling of the Montgomery case of 2016 may be useful for her.

    A doctor is obliged to list all the possible side effects of a treatment so the patient is enabled to make an informed decision about whether they accept treatment. If the doctor fails to do this, even if they are ignorant of the evidence, they are liable for any harm caused .

    However, it is more tricky in the case of a child as the authorities remove the child from the care of the parents and make the decision themselves. Also, the doctor would claim the resulting deterioration was 'all in the mind' as without relevant testing being made available, the patient can't prove they are more disabled.

    When I have tried to make complaints for others and also for myself, I have been told 'We do not take complaints from people with ME'. We have been effectively disenfranchised.
     
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  19. Daisymay

    Daisymay Senior Member

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    With a child surely the parents are the ones who consent to the treatment on behalf of the child (well of course in discussion with their child), therefore it is the parents who must be fully informed by the doctors of all risks so they can make what they deem to be the best decision for their child.

    Is there anyway she could get legal advice, pro bono? Might citizens advice be able to help point her in that direction?

    As for not taking complaints from PWME, how utterly unacceptable, and if they are breaking the law on consent they are breaking the law, whatever the disease. And they are also breaking GMC guidelines.
     
  20. Sasha

    Sasha Fine, thank you

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    This whole thing is awful.

    Might there be any mileage in the mother contacting her MP? In all political parties there now seem to be MPs supporting PWME one way or another, with Jeremy Corbyn just the latest example.
     
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