We are pleased to host writer Ted Monroe with a wonderfully incisive article on the recent controversial article ‘The Painful Truth about Long Covid’ by Alan Levinovitz.

Continuing the dialogue on ME, Long Covid and evidence-based psychiatric education Audio on Substack In June, the Royal College of Psychiatrists responded to our open letter concerning the framing of Long Covid at the Royal College of Psychiatrists International Congress. We welcomed the opportunity to receive a formal response. Rather than replying immediately, we took time to consult with many of the charities, organisations, clinicians, researchers and patient advocates wh

Hold your excitement! Today, on the 14th June, we are present and LIVE at the Royal College of Psychiatrists International Congress in Liverpool to share a respectful leaflet and our open letter directly with delegates. This is ahead of tomorrow's Long Covid presentations by Paul Garner, Trudie Chalder and Alan Carson.

The response has been extraordinary. To date, the letter has received 1,200 individual signatories and the support of 58 organisations, including clinicians, researchers, patient advocates, and members of the public. This reflects a clear and growing call for scientific rigour, respectful discourse, and appropriate representation of evidence in discussions of IACC (infection-associated chronic conditions).

By Dr Elke Hausmann Audio available in Substack We are pleased to welcome the return of Dr Elke Hausmann as a guest writer. In this article she examines the controversial WIRED article which has sparked significant concern among patients and advocates for its portrayal of Long Covid, recovery narratives, and brain retraining approaches. What a headline. Ok, so generally journalists are not responsible for the headlines to their articles. But there are several tropes here, so

How to breeze through a heat wave with ME & Long Covid Audio version on Substack 101 Quick PDF Download 101 Quick Image Save Longer Form Article Heat can significantly worsen symptoms for people with ME and Long Covid, particularly for those with a strong dysautonomia (autonomic dysfunction) presentation. And preparation can make all the difference. It can very much feel as comfortable as a goth in summer - very unfun! This is not “just being bad with heat.” For many disabled

It is ME Awareness Day, and the publication of our open letter to the Royal College of Psychiatrists sits within a long and well-documented history of contested approaches to ME within psychiatry and adjacent services.

If we are clear on what psychologisation is, we can recognise it, argue coherently and also question to see if others understand it

Invisible Illness by Emily Mendenhall could have been a holy grail for the community: a person with epistemic authority, a strong social ethic, inspired to write from a personal and relational experience of Long Covid.

We are pleased to welcome Dr Elke Hausmann as a guest writer and friend of Long Covid Advocacy. In this article she delves into the details and controversies of Emily Mendenhall’s new book ‘Invisible Illnesses’ with precision and acuity - providing a much needed analysis for the community.

Exulansis is defined as the tendency to give up trying to talk about an experience because people are unable to relate to it.

This is a bit more of a personal post - exciting but with a twist. Like Benton Fraser, in Due South (one for the Gen X’ers), we are having a temporary directional change with a new sister project, @cripademia and a book!

A Campaign Guide for the Bait and Switch Tactic

Whilst brain re-training programs are more universally recognised as being problematic in Long Covid and ME, these other psychological approaches often fly under the radar. It is important that we recognise them for what they are: medical gaslighting.

This article explores how cognitive therapies contribute to a dangerous medical paradigm for chronic illness. We shall focus on Paul, ‘he’s not the messiah, he’s a very naughty boy’, Garner’s opinion piece for the BMJ and his appearance at the SIRPA conference. We examine the historical, rhetorical, and systemic forces behind mind-body medicine and how they obscure harm through compassion-washing, concept laundering, and misplaced optimism.

They will tell you that it’s progressive, groundbreaking, science pioneering into unventured territory...

Report reveals systemic neglect, missing data, and vanishing services

Lessons learned 5 yrs after Lockdown

There is a long history of the most profound societal shifts coming from the grassroots, from people forming communities and campaigning...

We created a SPLASH guide (which is also relevant for ME and other chronic illnesses), which contains a few handy pointers