May 31, 2019

A warning on 'CFS,' 'SEID' and 'ME/CFS' research and advocacy

A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms. The overwhelming majority of research on ‘CFS’ or ‘SEID’ or ‘ME/CFS’ or...

May 14, 2019

Sunday, 12 May 2019,  M.E. and the HSE: the good, the ‘bad’ and the ‘ugly’.  For patients with Myalgic Encephalomyelitis (M.E.) the HSE is an organization full of contradictions.  A reflection by MEAI member Corina Duyn on dealing with the HSE 


Global Advocates 4 Myalgic Encephalomyelitis are strolling through history for May 12th with The Hummingbird Foundation 

Copyright © Jodi Bassett March 2010. Updated June 2011.

In thinking about M.E. and all of the terrible t...

March 26, 2019

Around 190,000 people have a diagnosis of MECFS in the UK, and there are approximately 9,300 newly diagnosed cases each year. Yet, how valid a diagnosis of ME/CFS really is depends crucially on the rigour of the initial clinical assessment, and the efforts made to excl...

February 23, 2019

Lizzie Mooney is 12 years old. She is tall for her age with long blond hair. She likes to wear Chicago Bears pajama bottoms and a hoodie. She’s funny, making up games and teasing her siblings.

Lizzie excels in reading and math. She spends time crafting and watches scien...

February 7, 2019

Frank Twisk

The International Collaborative on Fatigue Following Infection (COFFI).
Fatigue. 2018;6(2):106-121. doi: 10.1080/21641846.2018.1426086.
Katz BZ1, Collin SM2, Murphy G3, Moss-Morri...

January 7, 2019

The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times. 


I started writing this blog in 2012. For several years since then, I have kept starting drafts on a particular topic, only to then abandon them becaus...

November 16, 2018


We do not understand why anyone in the UK would proactively recommend the IOM Criteria, which ignores not only the true nature of the disease, ME, but also Severe ME, which the...

October 8, 2018

It has come to MEadvocacy’s attention that a meeting for US ICD-10-CM coding by the Coordination and Maintenance committee took place on Sept. 12, 2018 with a discussion on the topic of changes to chronic fatigue syndrome (CFS) coding. These changes will affect the dia...

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