#MEAction, Author at #MEAction Network

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

#MEAction & 6 ME Orgs Call for CDC to Change How it Tracks ME/CFS

August 23, 2021 1 Comment

Together with six other organizations, we have submitted a proposal to the National Center for Health Statistics (NCHS) to add myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to the neurological chapter of the International Classification of Diseases (ICD-10-CM). Today, ME/CFS does not exist in the US ICD-10-CM. Instead, most US doctors assign the code for chronic fatigue

Where Does Your Donation Go?

August 20, 2021 No Comments

Do you ever wonder where your money goes when donating to your favorite charity? We certainly do! Why? Because we want to make sure that every gift we receive generates the greatest impact in our collective fight for research, medical education, and public recognition of myalgic encephalomyelitis/chronic fatigue syndrome. This is why we wanted to

Forward-ME : RESPONSE TO ‘PAUSE’ IN NEW NICE GUIDELINES

August 20, 2021 No Comments

As part of the coalition Forward-ME, MEAction UK is pleased to share below, the latest statement from the group regarding this week’s pause by NICE of new Guideline publication. ME CHARITIES BAFFLED BY DELAY TO NICE GUIDELINE Statement on the delay to publication of the NICE Guidelines on diagnosis and management of ME On Behalf

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

New Featured Pieces from #MEAction’s Writing from our ME Lives Group

August 18, 2021 No Comments

#MEAction is excited to share new pieces of work from the Writing From Our ME Lives writing group. Click on the buttons below to view their writing! Hope you enjoy their work. If you are interested in joining the next Writing From Our ME Lives meeting, they meet on every Thursday at 11am PST. Check

Fury as NICE cancels publication of finalised ME/CFS guideline

August 17, 2021 2 Comments

There is widespread anger in the ME community today as NICE announced that it will not be publishing their finalised guideline on ME/CFS after pressure from sections of the medical establishment. At #MEAction UK, we are furious that NICE have capitulated to vested interests of those who support graded exercise therapy instead of defending their

Cancelled: Chat to NICE ME/CFS guideline committee members

August 11, 2021 No Comments

On Tuesday 24th August at 5pm, we’re holding a community Q&A, and will be joined by two of the NICE committee members, who have spent almost 3 years working on the new ME/CFS guideline.

A sign that says pause against the backdrop of a blue sky. Let us pause together before Severe ME Day.

A Pause Before Severe ME Day 2021

August 4, 2021 No Comments

Our community is fighting every day to bring hope, health and justice to people with myalgic encephalomyelitis (ME). In August we especially take time to honor the 25 percent living with the most severe form of this disease and remember those who have died from ME. August 8th marks the Severe Myalgic Encephalomyelitis (ME) Day

Register for the IACFS/ME Conference

August 3, 2021 No Comments

Join IACFS/ME, the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and people with ME, supporters, clinicians, and researchers for the 2021 IACFS/ME Virtual Conference, held August 19-21, 2021. Attendees will have access to three days of virtual workshops, lectures, and updates on recent developments in ME/CFS research. Some of the conference events include: “Orthostatic Intolerance

Author: #MEAction