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Emily also has 'Sharpee Syndrome'....prone to block unwelcome tweets and cannot discuss genuine concerns raised....

For Advocates, (especially formal or paid ones) surely the first requirement is; Are we talking Advocates or advocates? When dealing with Statutory services; 1. Advocates: to know and understand the legislation and legislative framework and person's entitlement. 2. Know what statutory guidance...

:emoji_clap: So sorry to hear of your loss, and sympathies over the pressure you are under; it makes the project all the more special and powerful.

1 remember finding this very useful. Carol Sieverling Carol Sieverling of the CFS & FMS Support Group of Dallas-Fort Worth wrote this article based on transcripts of another member's visit with Dr. Paul Cheney, transcripts of a presentation he gave at a conference in Orlando in October 1999...

We would be happy to upload these to our GP Training Resource page and material? GP Awareness http://nandsme.blogspot.com/p/blog-page_23.html 1. It could go with a statement that this is a "trailer"/ "preview to the bigger project. It will be superceded as and when. 2. It would nip in the bud...

Will do. Thanks!

Thanks Natalie. We had an event on the 11th September where ME and CFS training was on the agenda. I heard late in the day from Shelley Mitchell, (below), that "it was actually the CCG that had changed the agenda for the 15 session and talk. It didn't happen as planned, but was still very...

I too am delighted to have these short sharp and snappy.... pithy too! Will suggest that Suffolk GP 'Down Day' and Training consider applying for use of them to be shown. Natalie, can you let us know how we may arrange that?

Some very useful comments and observations here. I would like to add a few more from our experience Suffolk with Dr Nacul. http://nandsme.blogspot.com/p/the-story-so-far.html In effect I would like to defend him regarding the Livestream. Some of you will know the gist but it is useful to repeat...

Initiative ended in a report - then preceded CureMe Biobank and LSHTM involvement.

Not Healthwise Adam, Healthwatch. Trafford https://www.healthwatch.co.uk/news/2017-11-16/tired-explaining-experiences-people-chronic-fatigue-syndrome Lancashire https://healthwatchlancashire.co.uk/wp-content/uploads/2014/06/REPORT_ME-CFS_June2017.pdf

http://nandsme.blogspot.com/p/patient-survey.html All Party Parliamentary Group on ME In March 2010 part of our survey was included in the All-Party Parliamentary Group on ME 'Inquiry into NHS Service Provision for ME/CFS' (p6). The APPG commented on page 8 of their report: 'While the APPG...

http://nandsme.blogspot.com/p/patient-survey.html Survey Evaluated by leading ME researchers and doctors; Dr Pheby, Dr. Derek F. H. Pheby, BSc, MB, BS, LLM, MPhil, FFPH, is a Visiting Professor of Epidemiology, Buckinghamshire New University, Wycombe, England, United Kingdom. He served as...

Interesting tweet...perhaps we should send it to Bath....... Marcus Munafò Retweeted Guillaume Rousselet @robustgar · Aug 29A reminder that the Declaration of Helsinki makes pre-registration mandatory: 35. Every research study involving human subjects must be registered in a publicly...

Actually, I found the booklet quite 'neutral and uncontroversial! It is better than I was expecting.....

10 years ago......... https://www.telegraph.co.uk/news/health/news/6691695/Ban-chemical-linked-to-cancer-in-baby-bottles-campaigners.html "In a letter to Andy Burnham, Health Secretary, leading scientists said the use of the chemical Bisphenol-A, in baby's bottles and other products used to...

I asked the awkward squad question on public confidence and contaminated blood N V CJD.......... Correction 1 05 into session! https://www.thersa.org/events/2019/07/our-future-in-the-land Our Future in the Land Tuesday 16th July 2019 at 18:00 - 19:15 The Great Room, RSA House Tagged with...

A big thanks to MEA and especially to Russ..... Have sent to my son, now 35 and has been grappling with this 21 years. You have articulated so well his predicament made worse by his being ill as a child and never finding himself and finding an identity in the adult world. He is asking how does...

He was a neighbour wrongly diagnosed with ME. Double double, toil and trouble, round about the cauldron go. In the crushed brains and spinal cord throw, thalamus, spleen, and tonsils also, then cool it with tainted Blood, Well done, for we shall gain a greater Profit to share with the farmers...