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New video: Children with ME

Discussion in 'Advocacy Projects and Campaigns' started by Adam pwme, Jun 11, 2019.

  1. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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    ME is the biggest cause of long term sickness absence in schools [1]. 1 in 5 parents face child protection proceedings [2]. ME is not taught in medical schools and 80% of doctors think its psychosomatic [3]. Because healthcare professionals don't understand ME they start blaming the parents. ME is often mistaken for Fabricating or Induced Illness (Fii) a form of child abuse. ME is actively targeted in Fii training.

    Care for an ME patient is counterintuitive and goes against general medical training. Overexertion can cause a crash (flare in symptoms) for days/months/weeks. In severe cases it can cause relapses and patients become significantly more disabled for months/years; some never recover. The NHS recommends Graded Exercise Therapy where patients are told to increase activity and ignore symptoms. Multiple surveys have consistently shown that Graded Exercise makes over 50% of patients worse [4] and has been rejected by over 80 charities [5]. Parents are often left with a choice: give their child a harmful treatment or face prosecution.

    Lack of education leads to disbelief, mistreatment and abuse. Jessica Taylor-Bearman author of Behind Dark Glasses [6] talks about the care she received and the lasting impact.

    [1] https://www.tymestrust.org/pdfs/dowsettcolby.pdf
    [2] https://www.actionforme.org.uk/uploads/pdfs/families-facing-false-accusations-survey-results.pdf
    [3] https://podcasts.apple.com/gb/podcast/episode-four-dr-nigel-speight/id1374903449?i=1000430064953 (4 mins 50)
    [4] https://journals.sagepub.com/eprint/hWSxVIBTzDtqisvafkhE/full
    [5] http://www.virology.ws/2018/08/13/trial-by-error-open-letter-to-the-lancet-version-3-0/
    [6]
     
  2. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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    Transcript

    ME is the biggest cause of long-term sickness absence in schools (51%). Survey of over 330,000 pupils. Dowsett, Colby 1997. (Slide)

    1 in 5 parents of children with ME are threatened with child protection proceedings.
    Action for ME Survey 2017. (Slide)

    Stephen Pound MP, Ealing North (Clip)
    What happens to that child? I'll tell you, very often, they're referred to Social Services. Very, very often, child protection referrals are made because their child is missing school, and imagine the impact on that child, on that family.

    ME affects one of 300 people in the UK but it's not taught in medical school. Department of Health. (Slide)

    The WHO classified Me as neurological in 1969 but 80% of doctors believe it is psychosomatic. Survey of doctors in General Medicine 2019.(Slide)

    Emma Shorter, Scottish Parliament Petitions Committee(Clip)
    Because health care professionals don't understand how children can remain so sick for so long, they start blaming the parents.

    Me is often mistaken for Fabricating or Induced Illness (FII), a form of child abuse. (Slide)

    NHS Choices(Clip)
    The invention or fabrication of symptoms in a child by a carer. The mother may fabricate symptom in a child because this is a form of child abuse.

    Children with a diagnosis are not safe from investigation because ME is targeted in FII training. (Slide)

    Mary Jane Willows, Action for ME, 5 live Investigates - May 2019(Clip)
    I was recently informed by a social worker the ME's now highlighted in some FII training. Social workers are now more suspicious of ME. The number of people in the 16 years I've been working in this condition, it's escalating, and within that time, not a single case where this diagnosis of ME has it been proved. I think although the numbers are high, we're only seeing the tip of the iceberg.

    Within the last two weeks, a moderately affected young person that I'm working with, he was doing really well. He was progressing at a gentle, steady rate, but his paediatrician forced him to go back into school with parents under threat of action if he didn't attend. The resulting activity and stressed caused him to crash, and it could take him months to regain that level of activity again.

    Care for an ME patient is counterintuitive and goes against general medical training.(Slide)

    Overexertion can cause a crash (a flare in symptoms) that can last for days/weeks/months. (Slide)

    Tina Rodwell, The Canary Podcast 2019 (Clip)
    They got him to do some catching balls and sitting up and down from a chair, and he could do 20 times. The next morning he woke up, he was in severe pain. I have never witnessed anything like it in my life. By that evening, he asked me if he was going to die.

    In severe cases, patients can relapse and become significantly more disabled for months/years; some never recover.(Slide)

    Dr. Nigel Speight, Pediatric ME specialist(Clip)
    That race resulted in a severe relapse, and she was off school for 18 months. We all know the damage that overexertion can do, and that was one episode of producing an 18-month relapse.

    The NHS recommends Graded Exercise Therapy where patients are told to increase activity and ignore symptoms.(Slide)

    Emma Shorter, Scottish Parliament Petitions Committee(Clip)
    You had to increase walking by 10% each week, and as I began to get sicker and sicker, I was told this is the moment where you push through and you get better. I started the clinic being able to walk about four minutes each day. I ended and I needed a wheelchair.

    Graded exercise therapy makes over 50% of patients worse and has been rejected by over 80 charities. Analysis of 18,000 patients from multiple surveys, Geraghty 2017.(Slide)

    Dr. Charles Shepherd, ME association(Clip)
    We know from our own surveys that graded exercise, in actual fact, makes over 50% of people with this illness worse.

    Parents are often left with a choice: give their child a harmful treatment or face prosecution.(Slide)

    Carol Monaghan, Glasgow North West(Clip)
    When the parents of these children make the extremely difficult decision to remove their sick child from a program of graded exercise therapy, many of these families have child protection proceedings triggered against them.

    Some children have been removed from their parents and forced into harmful treatment.(Slide)

    Dr. Nigel Speight, Pediatric ME Specialist(Clip)
    This treatment consists of what they call an activation regime, where she has a physiotherapist for one hour and then a teacher. It hasn't made her better. It's making her worse, but because her mother has disagreed with the doctors, they have got a judge to remove her parental rights. This girl is at the mercy of these doctors, and mother is only allowed to see her 30 minutes a day. It is really one of the most horrendous cases I've ever seen.

    I've had patients who met the criteria for PTSD. They came to a doctor with ME, they left with PTSD. Dr. Nancy Klimas, Nova Southeastern University.(Slide)

    Lack of education leads to disbelief, mistreatment, and abuse.(Slide)

    Jessica Taylor-Bearman, Author and Patient Advocate, The Canary Podcast 2019 (Clip)
    I felt like it was judgment day when they came around. You had to have improved a bit. If you hadn't improved a bit, they would shout at you. I have had problems with doctors ever since. I find it very difficult to put my trust in them because I just know what happened to me before. I'm petrified they're just going to say it's psychiatric.

    "People become traumatised by a debilitating illness [ME] and then get traumatised again by the reaction to them by people who don't understand," Prof Leonard Jason, DePaul University.(Slide)

    Tina Rodwell, The Canary Podcast 2019(Clip)
    I vividly remember coming away from one appointment, and he said to me, "Why do doctors hate me so much, mum? Why won't they listen?"

    ME specialists shouldn't feel the need to apologise on behalf of the medical profession.(Slide)

    Dr. Nigel Speight, Pediatric ME Specialist(Clip)
    I always feel constrained to apologise on behalf of the medical profession, so I've apologised, okay. I'm sure you know what I mean.
     
    Last edited: Jun 13, 2019
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  3. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Who is Broken Battery?
     
  4. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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    It’s me should’ve said I did the video
     
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  5. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Ah, I see :)
    Well done!
     
  6. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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    Any chance you could share? @Andy
    Thanks
     
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  7. rvallee

    rvallee Senior Member (Voting Rights)

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    Truly excellent. The people whose expertise is trusted on this disease are genuinely clueless and incapable of exercising the duty of care that medical care requires, harming sick children with reckless disregard for the consequences.
     
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  8. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Thanks again, Adam, for all your work on these very powerful videos.
     
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  9. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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  10. Andy

    Andy Committee Member & Outreach

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    Code:
    https://www.facebook.com/sci4me/posts/844939525892458
     
  11. Amw66

    Amw66 Senior Member (Voting Rights)

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    Great video again @Adam pwme . Will share as widely as i can .
     
  12. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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  13. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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    Added the transcript at the top
     
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  14. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    Well done @Adam pwme . I have shared via Twitter.
     
  15. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Shared on Facebook through local MillionsMissing page.
     
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  16. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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    Thanks NelliePledge and Linda
     
  17. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    This seems to me so clear and simple. No fluff, just the central points laid out as they are. Excellent job @Adam pwme
     
  18. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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  19. theJOYdecision

    theJOYdecision Senior Member (Voting Rights)

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    This is amazing. Instantly shared to my personal Facebook page. I also have some instagram friends who have good reach too.
     
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  20. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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    Thank you and thanks for sharing
     
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