Valerie Eliot Smith Profile picture
Independent researcher, barrister and patient-advocate. Living with myalgic encephalomyelitis (ME) since 1981. Also P/Q psychotherapist. Visiting scholar @QMUL
Viscount Fox Murdoch-Rothermere Profile picture Sheldonian Profile picture 3 subscribed
Jun 3, 2022 10 tweets 3 min read
🧵 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.
May 31, 2022 20 tweets 8 min read
🧵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.
Dec 7, 2021 10 tweets 3 min read
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… 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.
Aug 28, 2021 18 tweets 6 min read
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.