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Hmmm again. Its not "life" getting on top of me, its ME illness rendering me too sick and disabled to live life. I find it generally unhelpful, and misleading, when well meaning people conflate ME with burnout, and use words such as "frazzled".

In 2005 to 2007 NICE released a series of Guideline drafts, I cant remember how many, 3, I think. After each draft there was opportunity for patients and advocates to make online responses to each draft. Charities and some informed advocates and patient groups made extensive and detailed...

http://www.brame.org/contact2.html Patient representative to NICE 2007, Tanya Harrison. Her statement about the NICE process and her resignation, edit. Tanya made all the vital points a full 10 years ago. NICE ignored all of them. Do we really have more years/decades to waste trying...

FOI to the DWP asking why the DWP part funded the PACE Trial. 2011. https://www.whatdotheyknow.com/request/part_funding_of_the_pace_trial_b

That was such a fantastic debate, Excellent. My only concern is that MPs may be left thinking that ME sufferers need 'other treatments' than CBT/GET. We bloody dont. Such an idea leaves us vunerable to opportunists who claim ME so called cures by NLP etc. So many pseudo ME cures are...

The Sussex CFS service is involved in this study, which is warmly welcomed by the unaccountable BPS supporting Sussex and kent cfs Society. Sussex and Brighton medical school is involved via Dr Neil Harrison. Edit. Here the chairman of the Sussex cfs society writes that his charity is...

It gives the impression that Colin Barton is more interested in representing the medical advisors to his Kent and Sussex CFS\ME Society, Dr Esther Crawley and Dr Alastair Miller, than being interested in representing the ME sufferers of Sussex and Kent.

The Susses cfs Society was long term connected with Barts. Not sure where they stand now, is there a 'cfs' clinic at Barts still?

The Sussex CFS/ME Societys medical advisor Alistair Millers views https://www.s4me.info/threads/not-a-recommendation-alastair-miller-the-prognosis-of-cfs-me.1909/#post-33357

The Sussex Cfs society is affiliated to AFME, BACME, Esther Crawley, Alistair Miller (medical advisors), and previously to AYME. As EC and AM are still blatantly in favour of psychosocial and cbt/get, can we assume that the Sussex cfs Society members agree that cbt/get and Oxford criteria are...

The Sussex NHS CFS Service states that its for Mild and Moderate CFS/ME. So what happens to severe people? Disappeared from the NHS Service AND the local patient group? So the sussex cfs society can say there are fewer severe patients?

Could be that severe patients in those 2 counties end up avoiding doctors and leaving the Sussex cfs society. That Society also experimented with Lightning Process a few years ago. The clinical lead of the clinic did.

The Sussex Cfs society is a registered charity, not merely called a Society. That Society does harm to ME patients nationwide, by collaborating with AFME, and previously with AYME, by publicly supporting psychosocial treatments, and by giving Esther Crawley and Alistair Miller credibility, so...

Its a registered charity, with the same 3 trustees from early on. Not too familiar with charity law, but do the members not have voting rights? Does the charity have a Constitution, I wonder?

Yes, brain and neuro "plasticity' research should ring loud alarm bells. Patron Jenny Seagrove is also on record for stating, in a newspaper interview, that 'Some people she knows with ME managed to turn their lives around, but others she knows with ME didnt manage to turn their lives around'...

The previous story from the Sussex cfs society is that it was Professor Anthony Pinching of Barts who encouraged Colin Barton to start a patient Society in the 1980s. With Alistair Miller and Esther Crawley as current Medical advisors to the Society, WHY do the patients of Sussex and Kent...

Tedx Rules https://www.ted.com/participate/organize-a-local-tedx-event/before-you-start/tedx-rules

'What is a Tedx event' https://www.ted.com/participate/organize-a-local-tedx-event/before-you-start/what-is-a-tedx-event

Aargh. #bandwagonjumpers

Dana Bopp 'Team leader and Speaker Liason' at TedxBristol, prides herself on her "coolness credibility". https://www.tedxbristol.com/team Really people, "coolness" was done and dusted by the '70s. These TedxBristol people are bandwagon jumpers, who think they are being 'edgy', but, like...