For those of you who don’t use Facebook. Below is a list of the external links shared within our Facebook Group during September:


David Tuller Twitter post: “It sure busts one of the arguments that have been made by those who think long COVID is largely psychosomatic or a result of anxiety and depression and coronavirus PTSD. They keep citing no antibodies as evidence that patients did not have an initial coronavirus infection.”


Long COVID and chronic fatigue syndrome share striking similarities


2021: Communications between NICE and the S4ME management committee about the paused NICE ME/CFS guideline


Trial By Error: A Letter Urging NICE to Publish ME/CFS Guideline Without Delay


Legal opinion and legal advice: the “paused” NICE guideline for “ME/CFS”


Long-Haulers Are Fighting for Their Future: Many people with long COVID feel that science is failing them. Neglecting them could make the pandemic even worse.–8xwyD5_cldsgAoszusMMemR82LNc58Tzh1I


Central Autonomic Network Disturbance in People with ME: A Conversation with Dr. Mark Zinn




New Poll: Have the Royal Colleges behaved responsibly in obstructing publication and implementation of the new NICE guideline on ME/CFS?


ME/CFS and the pause of NICE Guidelines – Woman’s Hour – BBC Radio 4


New Age Fluff or Real Treatment? Fibromyalgia Hyperbaric Oxygen Therapy Study Opens Eyes


Phil’s ME/CFS full recovery story & call for more research funding


M.E/C.F.S Patients’ Legal Fund


ME/CFS Research Published 21-27 August 2021


ME and the Virus that had never really gone–t1t8t8xdtoPbK8GATv_zQx8wsx6dKcMGZPro4Ek4-D4


NICE and Transparency


Does Low Dose Naltrexone Improve Natural Killer Cell Functioning in ME/CFS?


Letter to NICE from UK charities and support organisations


maxwhd Twitter post: “Clearly thought very carefully and deeply about her fellow humans (2011)”


Low Income Pandemic Payment


Science In The Age of Dogma: A Conversation with Dr. William Weir


Abuse of process & abuse of power: a NICE publication (with file download)


The Most Alarming Problem about Long COVID


“What is it like living with fibromyalgia? Difficult, unpredictable and painful.”


ME/CFS may be linked to failure in energy supply to the cells–t1t8t8xdtoPbK8GATv_zQx8wsx6dKcMGZPro4Ek4-D4


Founding father of Human Genome Project joins Doctors with M.E. with leading evidence based policy expert as Honorary Fellows


Attitudes to long Covid are straight out of the ME playbook – history must not be allowed to repeat itself


Michael VanElzakker Twitter post: “”Dr. Chia, do you think there is any chance that enterovirus in the gut can infect and travel via the vagus nerve to reach the brain?””


Doctors with ME Twitter post: “Public letter from our Board on the opportunity for a new “Medical Regulatory Agency”, with background on long-standing regulatory failure, unlawful medical norms, contra-scientific medical belief systems and their contribution to pandemic failure”


bmh555 TikTok post: “The Royal Free outbreak, a key moment in the history of medical sexism”


The Chronic Collaboration Twitter post: “Live streaming outside NICE #ProtestNICE4ME #PublishThatGuideline”


The Chronic Collaboration Twitter post: “OH & we cannot BELIEVE you wonderful people made #ProtestNICE4ME trend at # FIVE! We realised we need a social media co-ordinator during protests! It’s amazing that our community managed to achieve this from literally all working together. Brilliant. HT @PhoebsBo for the image”


Nao: ‘I have Chronic Fatigue Syndrome – I won’t be touring this album’


Petition: End reviews of PIP and ESA awards for people with lifelong illnesses


Nicola Jeffery – NICE Guideline Protest – 20th Sept 2021


The NICE debacle – will NICE survive?


Covid-19: New allergic reactions to hair dye reported


New study shows Fibromyalgia likely the result of autoimmune problems


What’s wrong with the NICE process + what can be done about it?


Lunetta Porchetta Twitter post: “NICE ME Guidelines POLL: ME patients actually being asked what they need and want! A novel approach… Q: Which of these would you choose to be the INDEPENDENT Chair of the ME roundtable coming up?”


ONLINE TALK with Prof Ron Davis: Progress and Challenges for a ME/CFS Diagnostic – 11th October 4pm