Myalgic Encephalomyelitis Archives

NICE announces roundtable event to ensure implementation of ME/CFS guideline

August 27, 2021 No Comments

NICE announced today that it will hold a roundtable in September as the next step in the publication of the ME/CFS guideline. The roundtable will include representatives from patient organisations and charities, relevant professional societies, NHS England and NHS Improvement, NICE and the guideline committee. It aims to, “better understand the issues raised and determine

Sign Our Petition: Publish the NICE ME/CFS Guideline Now.

August 19, 2021 3 Comments

We call on the National Institute for Health and Care Excellence (NICE) to publish the finalised ME/CFS guideline in its current form. Sign the petition On 18th August 2021, NICE were due to publish their newly developed ME/CFS guideline. It would have transformed the care people with ME receive in the UK and abroad. But

Connecting Black People with ME and/or long Covid in the UK

July 16, 2021 No Comments

Darren Randon, a poet, qualified teacher, community builder, facilitator, host and co-founder of Well Versed Ink from Thornton Heath, is launching a new group aimed at supporting Black and Black-mixed people with ME and/or long Covid in the UK. The group plans to create a safe space to share experiences and create community with the

Global media tells the story of the #Millionsmissing

May 19, 2021 No Comments

We are thrilled to see the press tell our story of the #MillionsMissing this year, and the #MillionsMore “long haulers” expected to develop ME/CFS following a COVID-19 infection. In Pittsburgh, a mother of four told her story in the Tribune-Review about her 25-year journey of never recovering after contracting EBV, the virus that causes Mono.

#MEAction Sends Press Release About #MillionsMissing

May 10, 2021 No Comments

#MEAction sent out a press release last week to alert media to the #MillionsMore developing ME following COVID-19. We invited 651 journalists in the U.S and 552 journalists in the U.K. to join our #MillionsMissing event this Wednesday, May 12th. Before COVID-19 long haulers there were the #MillionsMissing… Read the US Press Release Read the

Covid-19 has worsened our ME, report survey respondents

April 29, 2021 8 Comments

Read the first findings from the survey #MEAction UK and #MEAction Scotland are conducting with Action for ME to gather evidence of the impact of Covid-19 on people with ME. Preliminary Report The aim of the survey is to provide data that can be used, along with personal stories, to help our campaign to make

2021 MillionsMissing announcement for the week of May 12th

Get ready for #MillionsMissing

April 8, 2021 2 Comments

We are gearing up for #MillionsMissing 2021! This year will be a week long event, from May 9 to 15, of action and activities to strengthen our community, and fight for recognition, research and medical education for myalgic encephalomyelitis (ME). Check out our website for the #MillionsMissing timeline of events, grab your t-shirt, and plan a local event! We

NHS England omits advice to apply clinical judgement re vaccine

March 5, 2021 No Comments

It has come to light that a letter from NHS England and NHS Improvement to all vaccination centres and GPs in the UK has omitted advice that health professionals can and should apply their clinical judgement when placing people in group 6. Vaccination of people with underlying health conditions that put them at risk of

UK COVID-19 Vaccine Priority and Template Letters

February 12, 2021 1 Comment

The JCVI make it clear that the vaccine priority list is not exhaustive and clinical judgement should be applied for people with ME.

APPGs should collaborate on ME and Long Covid

February 9, 2021 1 Comment

#MEAction UK has highlighted three specific areas of overlap that could benefit from a collaborative approach by the All Party Parliamentary Groups.

Tag: Myalgic Encephalomyelitis