Independent researcher, barrister and patient-advocate. Living with myalgic encephalomyelitis (ME) since 1981. Also P/Q psychotherapist. Visiting scholar @QMUL
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
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.
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.