My Neuro survey 2021 People living with neurological conditions across the UK are being asked to take part in the largest neurological survey to help improve vital services and support. Anybody, of any age, with a neurological condition or suspected neurological condition in England, Scotland, Wales and Northern Ireland can…
At the request of the ME/CFS community, ANZMES has issued a survey relating to reactions experienced by the community to the COVID-19 Pfizer BioNTech vaccine. ANZMES also sought to ascertain prevalence of Long COVID and COVID-19 infection in the community. The opportunity was also utilised for respondents to express interest…
Hey folks, it’s me Ben. During this week’s #MEAction Giving Adventure we moved through the Forest of Federal Agencies as we surpassed our first fundraising level of US$15,000/UK￡11,178. While this fundraising adventure is all about putting the FUN in Fundraising, the work #MEAction has done within US Federal Agencies has…
The next meeting of the All-Party Parliamentary Group on Myalgic Encephalomyelitis (APPG on ME) will take place from 2 – 3 pm on 24 November 2021. Email your MP asking them to attend, and help to ensure the new ME/CFS guideline is implemented. Find their contact details at: https://members.parliament.uk/FindYourMP This…
Will the World Health Organization’s long COVID definition help or hinder? WAMES has joined other members of the World ME Alliance in writing to the World Health Organization (WHO) concerning their recently published definition of “post COVID-19 condition”, commonly known as long COVID. While we... News | WAMES (Working for…
The World ME Alliance has written to the World Health Organization (WHO) concerning their recently published definition of "post COVID-19 condition", commonly known as long COVID. While we commend the work undertaken to ensure people with long COVID are receiving a diagnostic label and subsequent support we remain concerned that…
#MEAction summarized the scientific talks about ME/CFS and Long COVID presented at the International Association of Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (IACFS/ME) Conference that took place last August. We sent this summary of those talks to our database of journalists reporting on Long COVID this past October to underscore…
Wow! So much has happened in the last three months. Between the historic change to the National Institute for Health and Care Excellence (NICE) guideline on ME, terrific articles featured in the press, the tedious work of holding US federal agencies accountable, the effort to enhance clinical care, the continued…
Tenim nova informació sobre les gestions que hem estat fent-i continuarem fent- al Congreso de los Diputados, en relació a la inclusió de dues ... (We have new information on the steps we have been taking - and will continue to take - in the Congress of Deputies, in relation…
The updated NICE guideline on ME/CFS contains substantial changes that alter the treatment and management of people with ME in England and Wales*. We need your help to tell doctors and other medical staff that the recommended treatments for people with ME have changed. We want to get the message…