1/14 #MEmedia 🧵
#ME is the devastating, life-limiting and sometimes fatal illness, myalgic encephalomyelitis.
Events in the UK over the last few weeks have again highlighted the complete lack of a consistent and coordinated media message from the UK's ME community. 2/14 Whilst many individuals have done great work in putting across their own stories, the overall #ME community's media message is fragmented, confused and lacking in cohesion and authority.

1/6 Yesterday I did a thread on #BringMillieHome & #SevereME Some people commented on my proposal that UK ME orgs shd, in coalition, create/fund a Crisis Team for cases such as Millie's. The orgs have cash reserves; this is one way they could be put to good use. Detail follows 🧵 2/ There is already a small informal group that assists in cases such as Millie's and they do brilliant work. However, my proposal would be for an expanded team with a formalised structure which could carry out rapid responses when necessary (DoLS, sectioning, safeguarding etc.).

#BringMillieHome
1/9 🧵
There has been much recent media coverage/discussion about the case of Millie McAinsh. Millie is a young woman who has been diagnosed with #SevereME. She was admitted to the Royal Lancaster Infirmary some time ago as she was unable to ingest/digest food. 2/ The 2021 NICE guideline for this illness references the need for tube-feeding in cases such as Millie's. However, #ME, especially in its severe form & particularly in young women, is an illness which inhabits a world of widespread cultural and medical ignorance and prejudice.

🧵 Thread follows (9 tweets):
1/ I have been asked about possible responses by the #ME patient community to the chapter on "ME/CFS" in the recently-published book, "Beyond the Hype", by Fiona Fox. These are my observations and comments: 2/ The book is an unreferenced memoir not a reasoned academic work. It is written from author's personal perspective & feels defensive in tone. The book's observations carry little scientific or academic weight but author has substantial backing from some heavyweight supporters.

🧵Thread begins (20 tweets):
@sajidjavid @DHSCgovuk @NHSuk Today is the final day of #ME awareness month. Recent developments are most welcome. However, it is important that we are reminded of the long and torturous history of this illness & its impact on generations of patients: #ME as an illness may well have existed for thousands of years - for as long as humans have possessed an evolving immune system. Anecdotal evidence begins to emerge more clearly during the 19th century eg. Florence Nightingale, post-Crimea.

Thread begins/
17 Aug 2021: in a highly controversial move @NICEComms paused the final publication of the new guideline for the illness "ME/CFS"
@domsalisbury has now collated the results of FOI requests showing the insidious lobbying behind NICE's actions domsalisbury.github.io/mecfs/nice-mec… It has become clear that this external interference was led by the psychiatric lobby. This vociferous lobby group has long controlled the narrative of "ME/CFS" causing unimaginable distress and damage to the patient community.

Thread on @NICEComms decision of 17 August to pause publication of new guideline on "ME/CFS". This thread sets out my view on current legal position. Like all public bodies, @NICEComms has a wide discretion in how it operates. However, when the decision to pause was made, the process had been completed, signed off and the final document had been distributed to stakeholders.