UK - The Young ME Sufferers (TYMES) Trust

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.

 

But you try @Barry and that means so much.
Your comments are extremely sensitive.

 

Thank you .

 

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.

 

Is this Esther Crawley's doing?

 

I expect EC is an excellent teacher. It's s a case of " the king is dead, long live the king"

 

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.

 

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.

 

My daughter got a birthday card from them in August , so they are still working. ( thankfully)