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.”

https://twitter.com/davidtuller1/status/1432484609657163780?s=21&fbclid=IwAR1WffwXAiwZHacD9ghFtpJDdQ3wI-xrzQNLsHS9GUZ68z8At-Hk_mqa96o

 

Long COVID and chronic fatigue syndrome share striking similarities

https://newatlas.com/health-wellbeing/long-covid-chronic-fatigue-syndrome-links-redox-imbalance/

 

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

https://www.s4me.info/threads/2021-communications-between-nice-and-the-s4me-management-committee-about-the-paused-nice-me-cfs-guideline.22190/?fbclid=IwAR1nE6t4E3ORAVTLEG5J2SRCstGMj9cboeljczvPFFPrHHtaWhzoYDyQQZA

 

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

https://www.virology.ws/2021/09/01/trial-by-error-a-letter-urging-nice-to-publish-me-cfs-guideline-without-delay/?fbclid=IwAR2M12YzoOhNImQYlMBNX_PXSOSH2TnJAEULAVPfm5ysp8OOM5lxzF8q2Y0

 

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

https://valerieeliotsmith.com/2021/09/01/legal-opinion-and-legal-advice-the-paused-nice-guideline-for-me-cfs/?fbclid=IwAR1VbY0qcOehr3VDV-QplfBnh5DkgrgT_gRMvXDaf09eZWpwBFszCFwbeWw

 

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. 

https://www.theatlantic.com/science/archive/2021/09/covid-19-long-haulers-pandemic-future/619941/?fbclid=IwAR1PCgz-EwR5Lw321az-OB–8xwyD5_cldsgAoszusMMemR82LNc58Tzh1I

 

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

https://phoenixrising.me/myalgic-encephalomyelitis-chronic-fatigue-syndrome/mark-zinn-autonomic-eeg-pem/?fbclid=IwAR2ubrjXeJWrQmgRpAcrDHkv4atdrAl7CJ74sVMqsvNMDERvRDO9qPn0AHA

 

Call for NICE to WITHDRAW its CURRENT ME/CFS GUIDELINE – CG53

https://www.change.org/p/the-national-institute-for-health-and-care-excellence-nice-call-for-nice-to-withdraw-its-current-me-cfs-guideline-cg53?utm_content=cl_sharecopy_30539566_en-GB%3A8&recruiter=1224171280&utm_source=share_petition&utm_medium=copylink&utm_campaign=share_petition&utm_term=G%3ESearch%3ESAP%3EUK%3EBrand%3EAll-Match_Types

 

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

https://meassociation.org.uk/2021/09/new-poll-have-the-royal-colleges-behaved-responsibly-in-obstructing-publication-and-implementation-of-the-new-nice-guideline-on-me-cfs/?fbclid=IwAR1lnNHNbXMa18ry8082zHf7vQLjsSTUpesn5ld7-HwGqEzSDLs6nFTTIc4

 

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

https://www.youtube.com/watch?v=dAG0aGtvekc

 

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

https://www.healthrising.org/forums/threads/new-age-fluff-or-real-treatment-fibromyalgia-hyperbaric-oxygen-therapy-study-opens-eyes.2688/?fbclid=IwAR1RJ1b_6-DrMriE3qB288KBX4KgC6Wd0xhWZp6JgpKYnHD-D8OeAN_jR6o

 

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

https://www.youtube.com/watch?v=2Tu_4zcBLqY

 

M.E/C.F.S Patients’ Legal Fund

https://www.crowdfunder.co.uk/mecfs-patients-legal-fund?experiment=1&fbclid=IwAR1r5O2_RoKsgvCs5aNdN3b2PlLjvlflA5x0bpiyYpMeEbJWjohHz7WDYs8

 

ME/CFS Research Published 21-27 August 2021

https://meassociation.org.uk/2021/09/me-cfs-research-published-21-27-august-2021/?fbclid=IwAR2VhbL5Qj-cOAzWHwWS8esPnt_mQYPb4NKf44Kt0NOqDJ_TFbcYmGZDzWs

 

ME and the Virus that had never really gone

https://crystallisingdream.wordpress.com/2021/08/18/me-and-the-virus-that-had-never-really-gone/?fbclid=IwAR0gCbtc2NBWHQ–t1t8t8xdtoPbK8GATv_zQx8wsx6dKcMGZPro4Ek4-D4

 

NICE and Transparency

https://www.investinme.org/Letter-to-NICE-Sep2021.shtml?fbclid=IwAR0BA7wWn_AoyDRv1jOOvcQ1VT2yKCVXl1gF4Q5dNucBE_CIYQL9hnuNTv4

 

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

https://www.healthrising.org/blog/2021/09/07/ldn-low-dose-naltrexone-chronic-fatigue-syndrome-natural-killer-cell/?fbclid=IwAR0xTJjzbSn5U6ImZrd7xn8oMJSN0q-L22o6BWzGQayzqBQnNW3oLy00vuE

 

Letter to NICE from UK charities and support organisations

https://meassociation.org.uk/2021/09/letter-to-nice-from-uk-charities-and-support-organisations/?fbclid=IwAR2LUxETpBBJr5evs23FYF6guiKgD5TQoSmC3vhtrOQbGn_HIuvm-rQmahk

 

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

https://twitter.com/maxwhd/status/1436074740431589377?s=20&fbclid=IwAR0xTJjzbSn5U6ImZrd7xn8oMJSN0q-L22o6BWzGQayzqBQnNW3oLy00vuE

 

Low Income Pandemic Payment

https://www.mygov.scot/low-income-pandemic-payment?fbclid=IwAR2CBaVa7n6pO9Q4_68vN2qeOvVM0ExAjrA6OXNRcQNm_0NZ-KW_apSHQgM

 

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

https://phoenixrising.me/myalgic-encephalomyelitis-chronic-fatigue-syndrome/william-weir-nice-guideline-science-dogma/?fbclid=IwAR1VbY0qcOehr3VDV-QplfBnh5DkgrgT_gRMvXDaf09eZWpwBFszCFwbeWw

 

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

https://valerieeliotsmith.com/2021/09/13/abuse-of-process-abuse-of-power-a-nice-publication-with-file-download/?fbclid=IwAR1R-1VHUXIPKPO9Wyb08qi6dUQlajpAydnoouYPNuPA-HM7ej0SwGk75KM

 

The Most Alarming Problem about Long COVID

https://unchartedterritories.tomaspueyo.com/p/long-covid-chronic-fatigue-syndrome?s=09&fbclid=IwAR0N01bPEfgtXE7xgE9Q0j_G0v7l1JhaO8_OLU92ROaYOiBikW32BN5av8o

 

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

https://www.versusarthritis.org/news/2021/september/what-is-it-like-living-with-fibromyalgia-difficult-unpredictable-and-painful/?utm_campaign=n-21&utm_medium=vearne&utm_source=orsofa&fbclid=IwAR1lnNHNbXMa18ry8082zHf7vQLjsSTUpesn5ld7-HwGqEzSDLs6nFTTIc4

 

ME/CFS may be linked to failure in energy supply to the cells

https://sciencenorway.no/chronic-fatigue-syndrome/mecfs-may-be-linked-to-failure-in-energy-supply-to-the-cells/1907778?s=09&fbclid=IwAR0gCbtc2NBWHQ–t1t8t8xdtoPbK8GATv_zQx8wsx6dKcMGZPro4Ek4-D4

 

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

https://doctorswith.me/founding-father-of-human-genome-project-joins-doctors-with-m-e-with-leading-evidence-based-policy-expert-as-honorary-fellows/?fbclid=IwAR2lh3sBOj2sL_WtMxMIqJoZCRsjHkpv6TIcspYCF-Tlq4z_nUQkr7fca1g

 

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

https://inews.co.uk/opinion/long-covid-attitudes-me-playbook-history-repeat-itself-1187999?fbclid=IwAR39OIStRKJdyo0X8EDyfCnn9L5G_AWZerupo49c_WHqpj8ZpsUOIme0AsA

 

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?””

https://twitter.com/MBVanElzakker/status/1438693759416475650

 

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”

https://twitter.com/DoctorsWithME/status/1431777461545603072?s=04&fbclid=IwAR1lnNHNbXMa18ry8082zHf7vQLjsSTUpesn5ld7-HwGqEzSDLs6nFTTIc4

 

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

https://www.tiktok.com/@bmh555/video/7010024872545946885?fbclid=IwAR1ieQbu85bLKB-iY0fCeBW5LmFhUKc_hedd0LRnj_5kqlCmeafLwQNmkdw

 

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

https://twitter.com/i/broadcasts/1RDxlPAQzYdxL?fbclid=IwAR3IhQc-i33YOctWHQ4lFRCwplJ9zLsM8O-VijgPMD0OkVvR0LzPvEsgY08

 

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”

https://twitter.com/thechroniccolab/status/1440035020152848389?s&fbclid=IwAR2eBj3NRKw-l04K_7u2HZldg18jylQL4cUTBtbRJjhA1z2D1By0RFefAkU

 

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

https://www.independent.co.uk/arts-entertainment/music/features/nao-interview-chronic-fatigue-syndrome-b1923914.html

 

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

https://petition.parliament.uk/petitions/593296?fbclid=IwAR2LUxETpBBJr5evs23FYF6guiKgD5TQoSmC3vhtrOQbGn_HIuvm-rQmahk

 

Nicola Jeffery – NICE Guideline Protest – 20th Sept 2021

https://www.youtube.com/watch?v=LuaiHj4Gyrg

 

The NICE debacle – will NICE survive?

https://doctorswith.me/the-nice-debacle-will-nice-survive/?fbclid=IwAR2eBj3NRKw-l04K_7u2HZldg18jylQL4cUTBtbRJjhA1z2D1By0RFefAkU

 

Covid-19: New allergic reactions to hair dye reported

https://www.bbc.co.uk/news/av/health-58651244

 

New study shows Fibromyalgia likely the result of autoimmune problems

https://www.kcl.ac.uk/news/new-study-shows-fibromyalgia-likely-the-result-of-autoimmune-problems?fbclid=IwAR2LUxETpBBJr5evs23FYF6guiKgD5TQoSmC3vhtrOQbGn_HIuvm-rQmahk

 

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

https://valerieeliotsmith.com/2021/09/24/whats-wrong-with-the-nice-process-what-can-be-done-about-it/?fbclid=IwAR0BA7wWn_AoyDRv1jOOvcQ1VT2yKCVXl1gF4Q5dNucBE_CIYQL9hnuNTv4

 

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?”

https://twitter.com/lunettaporchett/status/1441693985622405122?s=20&fbclid=IwAR28bN7QzlPFDHsFtpfl3nRx2xVD1JpZvY5rmOMsjyp_ODzmDDGfWG9sZ98

 

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

https://www.sheffieldmegroup.co.uk/post/online-talk-with-prof-ron-davis-progress-and-challenges-for-a-me-cfs-diagnostic?fbclid=IwAR3WJIf9n0HKve7vli9K9oSCo_mljBYSiHWVvfMucdVdopHJQVNnYkliS8M