united kingdom

https://www.actionforme.org.uk/news/early-bird-registration-now-open-cmrc-2020/ Event ticket page, https://www.eventbee.com/v/uk-cfsme-research-collaborative-6th-annual-science-conference/event?eid=105083142#/tickets

Your experience of ME services - Survey report by #MEAction UK Article: https://www.meaction.net/2019/10/17/me-services-in-the-uk-not-fit-for-purpose/ Full report: https://www.meaction.net/wp-content/uploads/2019/10/Your-experience-of-ME-services-Survey-report-by-MEAction-UK.pdf Results...

Just seen this on facebook, and to me it looks appalling. Is this even legal? In preparation for their JCP appointment someone with ME has to prepare a Positive Health Statement. In it the are 'advised' to avoid words like Chronic, or ME. As per:

This thread has been split from https://www.s4me.info/threads/jk-rowling-donates-£15-3m-to-edinburgh-ms-research-centre.11260/ And as I've said in another thread, since 2004, the MEA has been run by a small and relatively unchanging Board of Trustees who determine its policies and have...

https://www.theguardian.com/society/2019/sep/08/london-gps-told-to-restrict-specialist-referrals-under-new-nhs-rationing-plan?CMP=share_btn_fb&fbclid=IwAR1NgQEFLMvULqrAdJcV3xfvzjDB5yvio1ak834LgpxOJM9Zgn0V1d1_ByI

Maybe this will translate into greater sensitivity towards ME/CFS as this is the place of the ME/CFS Biobank. https://www.gov.uk/government/news/new-chief-medical-officer-appointed

OMEGA, Oxfordshire M.E. Group Date And Time Sat, 19 October 2019 14:00 – 16:00 BST Location Jury’s Inn Wolvercote Oxford OX2 8AL https://www.eventbrite.co.uk/e/david-tuller-discusses-mecfs-and-the-uk-medical-establishment-tickets-70094886693

https://www.wonderful.org/fundraiser/highlightingtraumafrommedicalencounterswithme-b89a2139?sfns=mo We're raising funds for the above research. Dr Adeniji is new to the field but his senior supervisors are not. A Professor of GP and a trauma psychologist will provide advice. This preliminary...

Capita seeks to reverse 'reputational damage' after death of claimant By Michael Buchanan Social affairs correspondent, BBC News Benefit-assessment company Capita is going to court to try to reverse the "reputational damage" it says it suffered after a claimant died. Victoria Smith died...

The number of Britons diagnosed with Lyme disease could be three times higher than previously thought, new research has found. Up to 8,000 people a year in the UK may suffer from the disease, which can lead to severe joint and nerve problems. Analysis of medical records found the number of...

A young woman with ME has started UK Parliamentary petition seeking training in relation to ME for teachers: https://petition.parliament.uk/petitions/266152 It can be signed by any UK resident or UK citizens including those living overseas.

[I could not find this posted anywhere, but admins delete this if I am duplicating.] There is a ‘survey’ on line, effectively asking people to support the retention of the current UK specialist ME provision, see https://cfs-me-nhs.onlinesurveys.ac.uk/specialist-services This survey appears...

My aim with this is to draw together brief details of all the ME/CFS (and all other variants on that name) research funded by a public, private or charity UK source that is currently ongoing today. I’m relying on information that has been made publicly available, so there is a good chance I...

https://www.meassociation.org.uk/2019/06/meeting-with-minister-raised-important-concerns-about-welfare-benefits-for-people-with-me-26-june-2019/ Hopefully DWP will take on board the issues raised

full debate here https://www.theyworkforyou.com/whall/?id=2019-06-25a.294.0&s=Chronic+Fatigue+Syndrome#g294.1

www.disabilitynewsservice.com/call-for-help-to-design-a-social-security-system-of-dignity-respect-and-trust/

Just wanting to query the facts in this post from MEA fb 'visitor's posts - i wasnt aware of LP being mentioned in parliament since the January debate... does anyone know anything about the veracity of this? I'd like to support Jo & point out that regardless of whether it was "reported in...

please can people comment on the reasons why if they wish I’m trying to see what the views are and why on this matter Basically the MRC are in talks with the CMRC over a funding proposal for extending the uk biobank and doing genetics research (this is taking a long time ) and have an...

https://www.facebook.com/CarolMonaghanSNP/posts/2012644808862705

Woman, 28, goes from keen runner to year in dark room because of severe disorder Jonathan admits he has seen his beloved fiancée’s character slowly slip away without any real support from the NHS in Wales. “The only things offered by the doctor were antidepressants, which made Natalie’s ME...