TIME FOR A PROFESSIONAL RETHINK ON ME : Your heart is as important as your head - blog by Jane Colby https://uttingwolffspouts.com/2018/05/12/when-children-dont-get-well/
This is so very true. I do not have ME, my wife does, so I can never have true empathetic insight into what it is like for her, just an approximation. At best I have insight at a more intellectual level in my mind, of what it must be like for her. It is a huge (and unfortunately very natural) human trait to presume we understand why someone should have acted the way we think they should have, rather than how they actually did. We only 'understand' their very particular circumstance from our own perspective, which often lacks the very personal and individual experiences that shaped the individual's own perspective. As the saying goes "Do not judge someone without walking a mile in their shoes". Gaining insight into another person's perspective is all too easy to presume, and immensely hard to achieve.
Wonderful blog. I have forwarded it to a friend who works as a counsellor in a secondary school in the hope that it gets circulated to her colleagues. Attitudes in schools must change. My son was repeatedly bullied by a school administrator who did not believe he was sick. She made him sit in her office rather than be allowed to go home ill. The irony of it all was that my son, who pre-illness loved school (and does now), was actually rather shaken by the nastiness of that school administrator. And it was his comments about this experience together with how he felt when at school (dizzy, sick, weak, overwhelmed by the noise) that seemed to enable a child psychologist to diagnose conversion disorder and school phobia. She encouraged my son to stop home schooling and return to school full-time which caused a serious relapse that probably set back his recovery by two years.
It is an excellent article, and I hope will be circulated widely among professionals with education for children with ME. A valuable resource for parents to use in their dealings with schools too.
It is revealing when one discovers the history of those whose judgment one trusts on the subject of ME. Strange that they all turn out to be people the "experts" would have us believe cannot be relied on.
Merged thread Worrying tweets from Jane Colby on Tymes Trust and social workers refusing to talk to them https://twitter.com/user/status/1155830748416397312 https://twitter.com/user/status/1155835775721836546
Oh to have been a fly on the wall at the safeguarding seminar earlier this year/ late last year. This may account for much as FII seems to have ramped up since. We touched upon it in a thread CFS was a designated subject , delivered by someone from Bath/ Bristol ( name escapes me - Rachel?). Specialist audience police, social workers, GPs. Coincidence?
Clearly a way will have to be found of informing defence solicitors/barristers about this state of affairs. Unreasonable refusal to brief oneself on relevant factors ought to be considered by the courts and taken into account. There have been in the past too many cases of multiple miscarriages of justice brought about by small coteries of "professionals" with unusual beliefs. Some of those allegations involved evangelical Christians, in the alleged ritual satanic abuse cases.The present ones involve evangelical psychiatrists. The police and social workers appear to remain gullible. Perhaps some of the beliefs are based on deep seated, personal, childhood trauma.
Merged thread All text below from Tymes Trust. TYMES TRUST SURVEY 2020 We have been liaising with the Dept for Education for a considerable time over the issues facing children with ME and their parents. Alongside this, we have also been designing our new survey. We are all going through such a difficult time at present and we send you our warmest wishes. We took the decision not to delay the survey because people are still phoning our Advice Line over these issues. You can do it from home, with no need to put replies in the post. Our Advice Line Team Director writes: "Our Advice Line receives a high number of calls relating to education challenges - whether that's because children, at times, cannot access education in the "usual" way, or because schools and colleges don't understand ME. We support families throughout these challenges and have spoken to, and visited, schools delivering awareness training and answering their queries. We are now asking you to please complete our new survey to give us more information on the challenges you're facing, and feedback on how your schools and colleges are supporting you - we would be very grateful if you would take the time to complete it." Jane Colby, Tymes Trust Executive Director says: "If you can manage to fill in our survey shortly, we can soon get a snapshot of the overall picture. Whether or not you have contacted our Advice Line, or have joined the Trust let us know your experience. Debbie and the Team would really appreciate having your survey answers as soon as you can." Find it here https://www.smartsurvey.co.uk/s/4B0P3/ Code: https://www.facebook.com/tymestrust/posts/2687382154880243 ETA: Got rid of Facebook tracking from the survey link.
Moved posts Is Tymes Trust still functioning? I was looking for up to date material on kids with ME recently and found all their leaflets had not been updated to refer to the 2021 NICE guideline rather than the old one.
I don't know. They are still submitting accounts to the charity commission but their finances seem to have run out. Jane Colby stopped tweeting some time ago. eta: https://register-of-charities.chari...ch/-/charity-details/3971452/charity-overview
I hope they are still going as support for families facing inappropriate child protection enforcement when professionals refuse to believe in the reality of ME is so vitally important. At least with the new NICE guidelines it should be easier in theory for parents to refuse GET here in the UK, or if needed legally fight it’s imposition.
