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Been thinking about the gravity of what is going on and that Robert M has issued a complaint following appearances on the 2th January 2021. The BBC should be taken to task in my view....for appealing to people like CG to Talk Up and to mislead people. An apology should be forth coming. May 15...

https://phoenixrising.me/archives/17049 Dr Clare Gerada steps into the lions’ den and “tells it straight” – attempts to “build a bridge between the largest Royal College and a very important problem” – hopes to “be better able to work with you to improve the care you receive from my profession”...

Post Covid SMS? Short Memory Syndrome?

My Tweet https://meassociation.org.uk/2013/01/invest-in-me-defends-invitation-to-dr-clare-gerada-to-attend-their-annual-conference/ Good2talk! Remember2013? Chair Royal College of GP invited to CPD-Accredited event to explain the effects on GPs & their patients of NHS reforms into the way LT...

Moved post Meanwhile coming up; http://www.nhshealthatwork.co.uk/ A must in March NHS Health at Work (who NICE stated in December that they have no jurisdiction over info advice on ME and CFS!) Our Annual Conference: Wednesday 10 March - Register Now! As a result of the continuing Covid-19...

I understand but it does demonstrate his influence and skill in getting a message out.

https://cidg.cochrane.org/news/co-ordinating-editor-paul-garner-discusses-his-experience-having-covid-19 Well Covid unwell or no, Professor Garner has been making ample use of his experiences from quite early on despite his ''severity' and unwellness'......... Paul’s core blogs BMJ Opinion...

'....the anachronistic primary care system that encourages buck passing on the cheap....' mmm!What you say above sounds spot on Jonathan. .....People should be seen by experts at day one. It would be cheaper but the 'internal market' has prevented anyone from seeing the way forward...." Agreed...

Moved from this thread. Selection of UK based projects Funded Research Clinical Research Major Grants 2020 https://www.ehlers-danlos.com/funded-research/ Headache disorders and craniocervical junction abnormalities in hypermobile Ehlers-Danlos Syndrome Investigating the relationships...

Moved from this thread: Beyond Bones - relevance of variants of connective tissue (Hypermobility) to Fibromyalgia, ME/CFS - Eccles et al Feb 2020 _______________ https://www.rcgp.org.uk/clinical-and-research/about/clinical-news/2018/june/new-ehlers-danlos-syndromes-toolkit-for-gps.aspx I have...

https://www.frontiersin.org/articles/10.3389/fneur.2020.00828/full? Signs of Intracranial Hypertension, Hypermobility, and Craniocervical Obstructions in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome 'Hypermobility was identified in 115 (50%) participants. MRI of the brain...

1 I have suggested he touch base with Jerome Burne? Jonathan, you have a good relationship with Jerome. You might feel inclined to ask him to get involved to steer this through I would suggest?

Really struggling with a response and am very grateful to SM4and others for all their collective efforts. FYI I contacted NICE and requested a discretionary informal 2 week extension to the 5th January due to personal and other extenuating circumstances. Was told that was not an unreasonable...

Could be useful as it is a new publication? Contains the Vink Vink-Neise paper as well. https://www.mdpi.com/books/pdfview/book/2100 Sciprofile link Brett Lidbury and Paul Fisher (Eds.) Pages: 202 Published: March 2020 (This book is a printed edition of the Special Issue Biomedical...

Forgive me if this has already been flagged up, but I thought it might be useful for you to use and quote? https://www.mdpi.com/2075-4418/9/4/124/htm Open AccessReview Work Rehabilitation and Medical Retirement for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients. A Review and...

In the light of recent events etc, e learning gems ( withdrawn) etc etc, best we keep our eyes on the ball…… So, FYI, related to 2007 NICE RCGP’s and New NICE and GPs…… https://rcgp-news.com/49LXZ6S4-5E5347081270F2374Q1XVDC4E2FEA9E06EC1C3/cr.aspx 'A fresh approach to general practice..’ So...

Sorry Andy. I apologise if you thought I was directing the word "noise" at S4 ME submission. I was not. Nothing could be further from the truth, and I knew how much consideration and effort and professionalism you have put into it. By 'noise' I meant the likely shear volume of responses...

I have same thoughts Peter; 'I struggle to get my head around larger quantities of information and gain an understanding of the overall structures '/ In producing such a thorough and detailed response to NICE’s draft do we risk losing a sense of which issues are the most important to us? -...

I totally agree!

Sadly, there isn't, as the late wonderful Connie Nelson set up LocalME on Yahoo groups in about 2005 as a closed 'safe' community for Local Group coordinators to provide feedback and local advocacy. Connie was ably assisted by others, some sadly who have also passed recently. (We all left...