Search results

What about seeking out the interest of Coroner, Debora Archer? as she asked RDUH for a draft Pathway on the 27th September, (especially for the severely affected, very severely affected) and they, it is patently obvious, haven't, can't of won't oblige! What about S4ME adapting one which 'we in...

By getting the needs enshrined in the NHS Standard Contract with careful explicit wording And key performance indicators....KPIs. Challenge through the procurement process. Well, in theory, that's what we were led to believe...... But what if no one competent bids for the contract? Leave no...

At least their Interim Medical Director tried to progress matters. But if the IC Board do not make this an emergency and a priority within their commissioning cycle, his pleas will fall on deaf ears. As will David Strain's.....

Quote! November 2024 after Prevention of Deaths Reg 28! 'There is no funding or commissioned service to provide management to patients with severe/very severe ME/CFS. The trust has a Community-based ME/CFS Service to support patients with mild to moderate disease in accordance with the NICE...

Correct Jonathan, but he is not the decision maker, the ICB are!

How right you are... A concept- something conceived in the mind : thought, notion 2 an abstract or 'generic idea generalized from particular instances', which are surely, principally; demonstrated need safety access equality legal entitlement Plus since 2014 Health & Care Act, for NHS...

What is this CSF.... referred to In document linked to BACME? British Association of Clinician in ME/CSF https://bacme.info/wp-content/uploads/2022/05/BACME-An-Introduction-toDysregulation-in-MECFS-1.pdf

List below.written up from my notes of Coroner's question and answer session September 27th which concluded the inquest proceedings, where Coroner Deborah Archer asked Dr Hemeley for the Royal Devon to develop a Pathway for her? Is the 'Guide' released this week by them it?? PERSONAL NOTES...

Absolutely! It's OT therapy based business as usual.. I bet Dr Anthony Hemsley is sick to his stomach. I have my notes from his Coroner's session. I will upload what I noted. It's in a list.

APPG 17th December 2024

We did ask if he could see if this exhibition could come to Suffolk & North East Essex? Bearing in mind our news that ICB has endorsed our hard fought over new service spec and pathway yesterday. .....in Colchester, it would be nice and fitting !? https://firstsite.uk/ ? Or University of...

I wondered what progress had been made after I met Jeremy here in Suffolk. Great to see this!

Speaking of 'trauma'.... A 'neighbour' has sent me this on 'trauma and cfs', to look at, thinking it might be of interest..... I have searched Carolyn, who is a sexual abuse surviver....who claims she has/has CFS etc bedbound...

Trish, bearing in mind the thread where Alan Carson has popped up, ....- rebuttal of NICE 2021,- Clinical effectiveness of an online group physical & mental health rehab programme for post-covid-19 condition REGAIN study, 2024, McGregor+ I might ask David T to have a look at this legacy issue...

I understand... I have tried for 19 years... to get Forward ME and former APPG to take some actions .... Ironically, all those years ago 2005,..... it was only MEA and Neil Ridley and Tom Kindlon who saw the potential for real damage. Everyone else was focused on Emerging 2007 NICE.

As AfME were instrumental in this publication, AfME should concede that the review date is now a tad overdue, 2011...! So, this report previously endorsed and involving AfME, is contrary to and in defiance of the reviewed NICE Guidelines of 2021... It is dangerous. Both AfME MEA and any...

Dr Mada. Involved with Kings and Sir SW..... https://scholar.google.com/citations?user=PXo8BKEAAAAJ&view_op=view_citation&citation_for_view=PXo8BKEAAAAJ:1qzjygNMrQYC

Dr Mada instrumental in publishing above reports in 2006. https://www.rcpi.ie/News/former-medical-officer-to-uk-parliament-giving-faculty-of-occupational-medicines-smiley-lecture

Agreed, and sadly both MEA and AfME, and of course (AYME...subsumed by AfME), have a shakey track record and history some two decades ago, Chris C, Val H, MJW......... CC AfME misguided steer legacy and consorting with the devils in 2004 and 2005 is still being unpicked today. And STILL the...

That's a worry.