Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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Please can TeamPR help child threatened with 'intensive inpatient treatment' for failing to recover

Discussion in 'Action Alerts and Advocacy' started by Countrygirl, Nov 28, 2017.

  1. Revel

    Revel Senior Member

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    I am sure nobody here is upset at your remark, @Joh. Crawley holds a number of unfounded "beliefs" that frustratingly continue to go unchallenged as she "plays" her peers and wide-eyed conference audiences (unless DT has managed to steal a seat . . .).
     
  2. andyguitar

    andyguitar Senior Member

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    Well one things for sure the family concerned have got a lot of good people on their side now. Some more input from me: 1) Subjects local MP should be contacted. Unlikley but possible they would get invoved. 2) Contact a solicitor who does Human Rights law. I would be looking at something along the lines of legal challenge via Judicial review, that the proposal to force the child to leave the family home for in-patient treatment is incompatable with Article 8 ECHR. There was a case a few months ago about Great Ormond Street Hospital wanting to withdraw treatment from baby. Pope and Trump got involved. Fairly sure that was Judicial Review. Child might get Legal Aid. Be worth parents having a brief chat with a specialist firm see what the score is. But they need to get the ball rolling now.
     
  3. Gingergrrl

    Gingergrrl Senior Member

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    @Countrygirl Are there any updates re: what is happening with the mom and child in this case? Please keep us posted when you can and they are so lucky to have an advocate like you on their side.
     
  4. Countrygirl

    Countrygirl Senior Member

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    Hello @Gingergrrl :hug:

    At the moment, work is continuing behind the scenes and advice is being sought from people with plenty of experience of this sort of situation.

    Of course, when there are any developments that can be shared here I will let you know. :)
     
    MEMum, Binkie4, Gingergrrl and 2 others like this.
  5. Scarecrow

    Scarecrow Revolting Peasant

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  6. Countrygirl

    Countrygirl Senior Member

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    Hi @Scarecrow :)

    Thank you for posting Natalie's request.

    I wish we could get these stories in the public domain, but parents in particular are too afraid to speak up. Just imagine how vulnerable they are! It is only years after the event that it is safe for them to do so. Some have been interviewed, but cannot give permission for their stories to be told until the child is an adult and safe from reprisals.

    Many years ago, I was in a similar position. So many people in the area where I was living were being seriously neglected, ignored, vilified to such a degree that an alarming number were commiting suicide that I made it public. This started to attract the attention of the mainstream media and the local medical profession. Unfortunately, there was a very unpleasant backlash, which culminated in someone phoning me to pass on a message. They informed me that some people (no names were mentioned) had ........direct quote.............'have the power to do you great harm, .if you don't stop what you are doing'. There are powerful vested interests involved it seems.

    Sinlge mums in particular cannot afford to have their stories written up in the press and you cannot trust a promise of anonymity as there is too much to lose. I doubt their stories will be told for some years.

    People who have been harmed by GET could and should now report their stories as there is no reason why they shouldn't as can adult children who were harmed by paediatricians. Those still locked into the system need to be very cautious as they remain vulnerable.
     
  7. fingers

    fingers Senior Member

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    no probs, send me a PM with email contact please
     
    Countrygirl likes this.
  8. Scarecrow

    Scarecrow Revolting Peasant

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    Nathelie's email is on her twitter account.
     
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  9. Countrygirl

    Countrygirl Senior Member

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    Hi my friend! :hug::hug: (well, fingers and I have a ......history going back a few years to some interesting times ;););))

    You are safely out the other side now, so I don't think men in white coats will be knocking on your door @fingers . Well, my sympathies to be honest would be with them if they so much as tried. :D:p

    :thumbsup:
     
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  10. fingers

    fingers Senior Member

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    Thanks, got that :rolleyes:
     
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  11. fingers

    fingers Senior Member

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    It is strange that 'professionals' do seem to go a bit quiet once they realise that you know far more than they do about this bloody illness.
    So, I see it as a duty to speak up whenever possible.
    It is so good to see you still helping folk, Countrygirl.
    Hey folks, this lady (I hope she doesn't mind my sharing) has had, and probably still has, many of her own battles and struggles to fight. I hope you are all as inspired as I always have been :love:
     
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  12. JenB

    JenB

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    If helpful: http://www.meaction.net/wp-content/uploads/2015/05/ME2FCFS-RESEARCH-SUMMARY-Jamie-Seltzer.pdf

    The only way to prevent this abuse is sunshine – everyone speaking out as loudly as possible and being as visible as possible. Of course, it's one thing to make that decision for yourself. I could never imagine doing that for *a* child, let alone my child. I'm so grateful to the Hansens for the courage to be in the film. I can't tell you how many parents I spoke to (who got their children back) who told me their stories but were to afraid to appear on camera. It's just heartbreaking that the victims of abuse are most frequently the ones who don't have the power to retaliate.

    As an aside, I heard a story from a woman with Ehlers Danlos Syndrome who attended a screening of Unrest when I was in the UK. She said that children with EDS (hypermobility type) in the midlands were also being taken because when they showed up at hospital with joint dislocations, the presumption was their parents were abusing them. And this is a disease that has a genetic test! One of the EDS doctors who testifies in these cases apparently almost lost his license, too.

    If this is happening with ME (a common but maligned disease), EDS (a rarer but testable disease), what about all the kids with even rarer and even harder diagnose neurological or mitochondrial conditions? It's shocking. I really believe we need reporting that frames this broader issue, of which ME is just one case. Our stories help reveal how the system is broken but the system is harming even more people than we know.
     
  13. JD_Lucas

    JD_Lucas

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    If still needed, I can offer my graphic design skills.

    If there's a study or data that needs to be presented in a clear and concise manner, then I can create a graphic like the examples attached below.

    Over the past month I've tentatively started a project to create easy-to-understand infographics for M.E. here https://twitter.com/ME_infographics
     

    Attached Files:

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  14. Countrygirl

    Countrygirl Senior Member

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    Wow! That is really great!

    I think your skills will come in very useful and I shall keep you in mind

    MEMum is working on preparing an information pack for the paediatrician involved in this case and I think your graphics would be great. I suspect we won't have time to produce a final product that could be used generally, but what we prepare for this case could be the core of a more professional information pack.

    Ideally, we need a team to work together on this and not just one person.

    It would be a worthy achievement if TeamPR could produce a pack we can give to mums in this position to pass to their paediatricians who are claiming that the illness is psychiatric and rigorous intensive exercise is the cure. Just unbelievable! Yet that is what we are dealing with here.
     
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  15. JD_Lucas

    JD_Lucas

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    I'm happy to help for this urgent case, as well as contributing towards a general information pack on a continual basis.

    If someone can distill the studies of the physiological evidence of the illness into key points, then I can adapt them into infographics.
     
    Last edited: Dec 7, 2017
  16. TreePerson

    TreePerson Senior Member

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    Hi @Countrygirl can I ask was the historic phone call warning you off related to ME activism?
     
  17. MEMum

    MEMum Senior Member

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    Hi everybody

    It seems that the priority for now for Team PR is to produce a summary of key points as to why the GP and paediatrician should not be recommending referral for GET etc.

    Other support is being planned by CG et al.

    So those who have offered help with refs etc shd be messaged by me, by the end of tomorrow. If you don't hear by then please message me. Some of this has already begun.

    @JD_Lucas, your offer re infographics is brilliant, have you thought about contacting ME Action UK as well as they produce info/handouts eg for their protest days. I will msg you about how best to present the info we collate for this case.

    Thanks again
     
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  18. Countrygirl

    Countrygirl Senior Member

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    Yes, it was, but it was in connection to the link to organophosphates which is a major trigger/cause here.

    There was a large double-page broadsheet report written on our experiences in the Guardian by a journalist who investigated the serious shenanigans that surrounded it. It made alarming reading.
     
  19. Countrygirl

    Countrygirl Senior Member

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    Great stuff, @MEMum.

    I have been in communication with three very influential people over the last 24 hours and now have an important breakthrough thanks to one person from a 'high place'. ;)

    I will message or, better still, email you. Maybe tomorrow though but we do have a powerful piece of paper with an important signature on it now. :cool::thumbsup:
     
  20. Mary

    Mary Senior Member

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    Hi @Countrygirl - this link has some great information and several more links to research re ME/CFS and PEM etc. https://medium.com/@rochellejoslyn/...ts-of-biomedical-research-to-date-9249f17f291

    Unfortunately, I agree with you and others that someone who has closed her mind to the facts will not be persuaded by them, though I still think it's important to have as much ammunition as possible. Kudos to you for taking on this project! :thumbsup:

    I think publicizing the threat to remove the child might be effective and as mentioned above, tie in the story of the earlier child who was removed from their home and suffered for it. I can't see this playing out well in the press and I think someone who won't think for themselves would not appreciate adverse publicity.
     
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