The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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BBC Radio 4: Children with ME

Discussion in 'General ME/CFS News' started by MeSci, Jun 20, 2017.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    File on 4

    http://www.bbc.co.uk/programmes/b08vyly5

    Children with ME

    File on 4 investigates claims that parents whose children suffer from a crippling illness that leaves them sick and permanently exhausted have been falsely accused of child abuse.

    Parents of children with Myalgic Encephalomyelitis (ME) reveal how they have been investigated and referred for child protection measures on suspicion of a rare form of child abuse known as Fabricated or Induced Illness (FII).

    FII, also sometimes known as Munchausen's Syndrome by Proxy, is extremely rare and occurs when a parent or carer exaggerates or deliberately causes the symptoms of a child's illness. One charity says FII is being used inappropriately by education and health professionals. We talk to families who claim the stress caused by this accusation has made their children worse.

    With doctors divided over the best way to treat children, what's the impact on families?

    Reporter: Matthew Hill
    Producer: Nicola Dowling.

    Tue 27 Jun 2017 20:00
    BBC Radio 4
     
  2. Tom Kindlon

    Tom Kindlon Senior Member

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  3. aaron_c

    aaron_c Senior Member

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    @A.B. Suggested here that the interviewer at the liME conference could have been James Gallagher.

    Matthew Hill and Nicola Dowling, on the other hand, don't appear to be in the lunch photo with Ron Davis. Looks to me like they probably weren't involved in that.

    Does anyone know if some of the BPS stars were involved in the lawsuits (I assume there were lawsuits) stemming from Munchausen by Proxy diagnoses? My assumption would be that the BPS people wouldn't have a problem with that diagnosis unless they were feeling particularly compassionate, in which case they might call it "Good-Intentioned Munchausen by Proxy." Bringing up how their model has ripped sick children from loving families isn't good PR for them, so seeing it in the subject line gives me hope the report won't give an undue amount of credence to the BPS people.
     
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  4. charles shepherd

    charles shepherd Senior Member

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    Yes - Matthew has done all the interviews

    As indicated in the BBC preview, the emphasis is on children and adolescents with ME/CFS

    Controversies surrounding the PACE trial will also be covered in relation to how the NICE guideline recommendations on CBT and GET also affect the management of children with ME/CFS

    CS
     
  5. slysaint

    slysaint Senior Member

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    What about Crawleys 'Pervasive Refusal syndrome' diagnoses when children don't improve with her treatments?
     
  6. AndyPR

    AndyPR Senior Member

    AfME just posted this on their FB page
    Have they forgotten their links with Crawley? Maybe they are going to do a good job in speaking up for those families who have been victimised? With AfME, who can tell?
     
  7. slysaint

    slysaint Senior Member

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    Reminds me of an IT contractor (back in the day when I worked).......the bosses thought he was a god because he appeared to be always able to fix everything. What they didn't realise (but those who worked with him did) was that most of the problems were caused by him in the first place.
     
  8. Countrygirl

    Countrygirl Senior Member

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    Astonishing! :ill: Someone is in denial. :rolleyes:

    It is bit irritating that they are trying to portray themselves as fighting on the side of the abused families when they are guilty, at least by association, of generating this distressing situation in the first place.

    They have to accept some responsibility for the abuse of families as they have given their support to the doctor who is responsible for re-diagnosing children with PRS and subjecting them to intensive physiotherapy, leaving the child paralysed. The child and family is then dumped ....if they are lucky. If they aren't, the parent is subjected to threats of legal proceedings. These families are too fearful to speak out and alert people to what is happening to them.

    AFME have blood on their hands. They need to apologise and distance themselves publicly from the person who is responsible before they can regain credibility.

    Will they do it?

    Nope!
     
  9. Barry53

    Barry53 Senior Member

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    I
    I had thought it could be Fergus Walsh.
     
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  10. Barry53

    Barry53 Senior Member

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    Whatever AfME's dodgy motives their first paragraph means programme should be good; they state false accusations. And AfME aiming to align with the side the programme presents as being the goodies?
     
    Last edited: Jun 21, 2017
  11. Jo Best

    Jo Best Senior Member

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    I didn't recognise him from the photo posted by OMF but it was Matthew Hill.
     
  12. Barry53

    Barry53 Senior Member

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    Used to work in a company with a similar fellow whose job title was Management Information Systems Manager ... MIS Manager !
     
  13. Barry53

    Barry53 Senior Member

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    Have to live with that for moment, because the sub-message is good. People when realising the game will soon be up start to pre-emptively spout winner-sounding rhetoric.

    Edit: does anyone know of anything AfME may have previously written contrary to this stance? Rumour / anecdotal no good, but written. And if there is then copy not just the link but the relevant web pages themselves, so if they took it down the evidence would not be lost. Would be good to do in advance of programme. Not in position to do any of this at moment.

    @Countrygirl and @TreePerson hope don't mind long edit after liking.
     
    Last edited: Jun 21, 2017
  14. Jo Best

    Jo Best Senior Member

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    It may be that AfME/AYME knew that this programme was in the pipeline (or that knew that it was under investigation by BBC journalists) when they ran that survey, to give them something to contribute, but I thought at the time it was a bit odd that AYME launched the survey shortly before they merged with AfME, so they must have known about the merger at the time, yet didn't mention this and that it would be passed on to AfME.

    There's no reason why they shouldn't make the right noises for the programme to keep up appearances, but I think we all know they aren't going to drive the charge to address this dire situation once and for all.

    That will be the job of the parents and deep respect to them.
     
  15. Jo Best

    Jo Best Senior Member

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    For example, from the June 2017 IiMER newsletter, bearing in mind that the organisers of the Invest in ME Research and Colloquium events are parents of children with ME (and are also leading the way in UK with a programme of translational biomedical research aiming to establish diagnostic tests and treatments on the NHS as an integral part of their UK Centre of Excellence projects) and that parents interviewed included Ron Davis and Kjersti Krisner, and world-renowned paediatrician Nigel Speight, and one of the only NHS specialists, Amolak Bansal.

    Why aren't the UK CFS/ME Research Collaborative charities supporting what these parents are doing?

    The hypocrisy is sickening and more so in view of this particular topic.


    radio 4.JPG
     
  16. Barry53

    Barry53 Senior Member

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    An awful lot of jockeying for position going on it seems, same as before a cabinet reshuffle ... And the word reshuffle sounds good to me here.
     
  17. slysaint

    slysaint Senior Member

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    The whole thing is typical AfME.
    TYMEs Trust have been fighting on behalf of parents and children for years, produced literature etc etc but get very little credit.
    Anyone who saw the BBC interview with Crawley and MJW of AYME where they called in Jane Colby (without prior warning what the program was really about ie the launch of FITNET) will have seen Jane trying to get across the numbers of parents contacting them about the issue.

    See also Lady Mars letter to the BBC to complain about the biased reporting and the BBCs response(from the programs editors):

    “We interviewed Esther Crawley on the 1st November in her capacity as the lead researcher in the FITNET-NHS trial that was being launched that day. The focus of the interview was the trial itself (the largest clinical trial into a treatment for CFS ever undertaken) not the row about whether CFS/ME is a psychological condition or whether psychological therapies are an appropriate treatment, and not the parallel row about whether the PACE trial into the use of psychological therapies in adults has been discredited or not.

    However because of the long running controversy surrounding the issue we decided to make reference to it by including a clip of Jane Colby from the Tymes TRUST (one of the charities that objects to the classification of CFS/ME as a psychological condition and the use of psychological therapies), We might have substituted Jane Colby’s contribution for someone from the ME Association but they would have made very much the same point.”

    So even the BBC were aware that AYME were NOT "one of the charities that objects to the classification of CFS/ME as a psychological condition and the use of psychological therapies".

    Now along come AfME (having taken over AYME but retaining MJW) with their Childrens services and suddenly they are the ones on the side of the parents.

    It Is total hypocrisy.
     
  18. Jo Best

    Jo Best Senior Member

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    Yep, reshuffle sounds good.
    Out with those ignoring, deceiving, exploiting, and treating with contempt, parents of children with ME.
    http://www.investinme.org/landerP5.shtml

    reset.JPG


     
  19. Countrygirl

    Countrygirl Senior Member

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    The above are yesterday's tweets from and to Tymes Trust.

    So, can we possibly guess which ME charity is mis-informing aka lying to the BBC about parents being prosecuted when their children fail to recover from ME? :ill::aghhh::bang-head:

    This must be challenged as it is a serious matter. Has anyone taken up on their FB page yet?
     
  20. Countrygirl

    Countrygirl Senior Member

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    Now this is interesting.

    Above I pasted this Tymes Trust tweet:

    Yet, this is the post about the programme on AFME's FB page.

    Doesn't add up!

    I cannot believe the MEA would be the source of the denial.

     

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