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In 1997? Eithne Leming ( a local LEA Officer) came across lots of children with ME and other chronic long term health needs so she set up a Special Child Course and so our Suffolk Support Group was formed;... Eithne was blessed with a special insight as one of her own children had a diagnosis...

Trading Standards ...........??? LP, or RT http://www.reverse-therapy.com/ http://www.reverse-therapy.com/ or MT Mickel Therapy......... A radical new approach to recovery Reverse Therapy is a simple educational process that teaches people to identify the triggers which prompt the...

They said from the outset that it was needed for people providing input into education, but would RCP/NICE would not consider securing a professional who was involved in that capacity.....( like me!)

Investment in our 'US goose' that hopefully will lay a golden egg of truth! Despite Reuters KK and MS trying to 'kill the goose with their short-sighted attempts at destruction of a valuable resource,.... their unprofitable actions motivated by self aggrandisement? , greed? ..... personal...

Many thanks. I have struggled to get a workable link!

Healthwatch Lancashire have published and update on the Trafford ME National Survey ( 2015 and 'ongoing') which was issued during 2017. This should be useful for NICE..... As Healthwatch are NICE stakeholders for the ME review. It would be good to get the survey replicated across all...

Surely we should look to what personalised, palliative care approaches bring to this situation? That in effect is what is required for the severely affected. A management and oversight that flexibly responds to the situation as it presents itself? Similarly a contingency for acute needs at any...

Missing Millions Norwich!

"Mostly without treatments, if we could just get a handle on not making us worse, that would be a big step. One big one for me was home visits. In my case, because I was on Coumadin, years of office visits to check INR took a HUGE toll on my functional capacity. Once I switched to a doctor who...

This is what we had in East Anglia until 2006/2007 and this is what was lost...... This is why we are continuing the fight for re reinstatement of the service model developed by the Late Dr Terry Mitchell to help the severely affected. I believe Dr Paul Worthley also has a similar appraoch and...

But I am worried about it or I wouldn't be posting about it! Just revisited the Scoping brief in case my mind was playing tricks on me! 2 issues. https://www.nice.org.uk/guidance/gid-ng10091/documents/draft-scope "So as to who the Guidelines are for:" see below but, Then I spied this...

Adam, this is vital to counter FII. Can't stress this enough. Savey ME knowledgeable LEA officers and specialist teachers are often the only professional allies that families have in defended against aberrant medics and Social Workers . Ask Tillly!

Key issue is Education AND Health Care Plans.. currently in the news. Also PRU staff were/ are specialist 'trained' to deliver health specific interventions... as are lots of staff in Specialist settings. I was in service trained in early 2000, but would have balked at delivering certain...

Not quite. Social Workers are LA and NICE had to cover them to be compliant with 2014 Health & Social Care Act. It's my understanding from reading all the NICE background information that the NICE remit has evolved and now also has reference to others in LA like LEA staff. I drew action to this...

Thank you Jo. In my post, I spoke as an affected parent but separately, I can also speak as an educational professional as well, working with this specific disability group for nearly on 3 decades, between 1991 - 2019 which included many with ME and CFS. We had some excellent CAHMS...

"We started to play the game - go along, agree goals then ignore them. We also needed "experts" to provide letters for schools, exam boards etc. We were fortunate not to be pressured into inpatient stays, and their regular programs which involved attending weekly were deemed too much travel."...

There might be a couple of slide/ ideas contained in a power point which was to raise awareness with Social Workers?

Who is Wessely? A chameleon.... who changes his rhetoric to suit the occasion or the audience. A real establishment behind the scenes man. With equally ambitious wife, has resulted in disservice to an enormous number of patients; whether that be ME or Gulf War Veterans or those poisoned at...