A short interview with David Coventry about his book Performance and MECFS. I’m sold after reading this. Ordering the book now. https://www.thepost.co.nz/culture/350299897/writing-unrelenting-painful-experience-chronic-fatigue
The Press: "Young father with chronic fatigue desperate to get well for his family" "Tyrone Hauraki’s limbs feel like they have ropes tied around them. He’s exhausted every day. He has brain fog, and a tickle in his throat that does not go away. Bright lights hurt his eyes, conversations are tiring, and for long periods of time even part-time work has been impossible. For four years, the 28-year-old father of two has tried to get answers for his symptoms. No treatment has worked. His 4-year-old daughter Mila has only known a sick dad, not the vibrant, “life of the party” and “class clown” his friends knew before. Hauraki has been diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). His diagnosis was a process of elimination, something he felt doctors often defaulted to if nothing else made sense. It’s not a diagnosis he completely accepts." "About four years ago, Hauraki was out for a run when his lungs started to burn. He was the fittest he had been, so it was unusual, he said. “By the time I got home something felt really wrong. The burning in my lungs stayed there all day. When I woke up in the morning it actually felt worse.” He developed a sore chest and the tickle in his throat. He went to his GP, who gave him antibiotics for a chest infection. When that didn’t work, he was given more antibiotics for a sinus infection. For over a year, he went back to the GP about every two weeks with the same symptoms. Nothing worked." "His family and friends fundraised $13,000 for a type of stem cell treatment, which Hauraki had last week. It is not yet known if it will have any effect. A haematology specialist doctor urged caution over pursuing stem cell treatment for chronic fatigue, citing a lack of research into its efficacy. There was no published case of using blood stem cell transplant for chronic fatigue, the doctor said. But Hauraki was willing to try anything, he said, as he just wants to get well for his family."
I haven't noticed any reports of stem cell research for ME. I barely know what it is except for its use after chemotherapy in lymphoma and leukaemia. What would be the rationale for it in ME? I wrote my usual letter about using 'chronic fatigue' in the headline. Edit: The headline has now been changed to include 'syndrome'. I even got a nice email to let me know
NZ research project seeking (anonymous) stories from people who have given up on seeking healthcare due to bad experiences due to biases against race, gender, disability etc (closes 1 August 24). Not ME specific so I don't think it needs its own thread. Just posting in case some members here have stories they want to share. I haven't looked at the project in detail so do your own due diligence first. A quick skim shows there are a couple of ME/CFS already Article about the project: https://theconversation.com/i-felt-...f-shame-stop-people-seeking-healthcare-231683 Link to project itself: https://wahikorero.co.nz/projects/i-felt-too-whakama-to-go-to-the-doctor/
An article in the Royal Australia and New Zealand College of Psychiatrists journal equating Long Covid to hysteria, by New Zealand psychiatrists: Long COVID – Can we deny a diagnosis without denying a person’s reality?, 2024, Little et al.
A similarly framed article — The Conversation: Success in treating persistent pain now offers hope for those with Long COVID
I just saw an ad on Twitter from BMJ promoting their Best Practice guidelines being available to Te Whatu Ora staff until end of Sep 2024. https://twitter.com/user/status/1807549684279570624 It required no registration despite what it said and I was able to access the page for ME/CFS easily. At a quick glance it appears to align with Nice Guidelines. https://bestpractice.bmj.com/topics/en-gb/277
In-depth interview with David https://volume.nz/ellipsis/enacting-the-illness-a-conversation-with-david-coventry-ellipsis Also an introduction https://volume.nz/volumebooks/book-of-the-week-performance-by-david-coventry
And another review for David's book... https://alysontheblog.com/2024/06/22/performance-by-david-coventry-2024/
From Dan the LC Kiwi : "Check out http://dysimmune.nz for the latest #LongCovid #MECFS #PostViralIllness research happening in Aotearoa NZ. If you are based in Auckland, consider signing up to be part of a study." https://dysimmune.nz/our-team/
Critical Reforms Needed For ME/CFS Patients In Aotearoa: Coalition Calls On HDC For Action https://www.scoop.co.nz/stories/GE2...otearoa-coalition-calls-on-hdc-for-action.htm
Grant Illingworth KC appointed as Commissioner to the NZ Covid-19 Royal Commission. https://www.youtube.com/watch?v=kknj6u1C04g "[My wife and I] experienced lockdown in almost privileged circumstances, but we experienced Covid in a way that affected me personally quite badly. I had a period of illness which I attribute to Long Covid."
Thanks for posting about Grant Illingworth, SNT. Dr Richard Webby was just on Radio New Zealand Sunday Morning The recording isn't up yet, but I will update the post when it is. (Link since updated) https://www.rnz.co.nz/news/covid-19/525469/covid-19-will-be-with-us-forever-flu-expert Professor Webby is part of the International Advisory Group of One Health Aotearoa, and has a WHO role The reason I'm posting about this is that Long Covid is briefly discussed as part of the conversation about Covid-19. The interviewer asked if there is any doubt about Long Covid not being psychological and Professor Webby was very definitive, no doubt at all, it's not psychological. He noted that SARS-CoV-2 is not the only disease that causes post-infection syndromes. Professor Webby and One Health Aotearoa are worth keeping in mind as possible collaborators - e.g. with Webby's WHO connection and One Health Aotearoa's capacity in health economics, epidemiology and more
ME Association · New Zealand: Radio station run from CFS/ME sufferer’s bed "The 46-year-old creates a 90-minute show every few weeks full of gags, fun banter about television shows and movies, quotes and music centred on his favourite decades the 80s and 90s. The show plays across 50 stations throughout New Zealand, Australia, the United Kingdom, the United States, Ireland and even in the Caribbean, Chile and Cook Islands. #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #Radio https://www.nzherald.co.nz/bay-of-p...sme-sufferers-bed/YYW6KEQD3FB4RKYPDPFWTYQL2M/
https://www.stuff.co.nz/nz-news/350...thers-condition-saw-her-daughter-starve-death This is an article about a young woman who starved to death after developing gastroparesis. It seems that this was triggered by having her appendix removed.
NZ Public Health Communication Centre — Long Covid: High economic burden justifies further preventive efforts Amanda Kvalsvig, John Kerr, Paula Lorgelly, Nick Wilson, Michael Baker
Prof Tate is moving department. I'm somewhat relieved it's only a move. Otago University has been on a ruthless cost cutting mission for a while and I've been worried they'd be kicking him out altogether https://www.otago.ac.nz/news/newsro...stry-bids-farewell-to-highly-valued-academics Chatterjee's profile: https://www.otago.ac.nz/healthsciences/expertise/profile?id=1735 Has published with Tate before: https://www.s4me.info/threads/prepr...le-in-me-cfs-helliwell-tate-et-al-2022.24771/ https://www.s4me.info/threads/chang...emic-dysfunctions-helliwell-et-al-2020.17624/
Marc Daalder — Senior Political Reporter at newsroom.co.nz covering climate change, health, violent extremism & misinfo, tech and energy https://twitter.com/user/status/1843207366994739394 https://bsky.app/profile/marcdaalder.bsky.social/post/3l5vvizllfa27