Yesterday, The Guardian published one of the most damning, accurate articles about “the greatest medical scandal of the 21st century” – the psychosomatic model of ME/CFS.
Continue reading ““The greatest medical scandal of the 21st century” – ME/CFS in The Guardian”
Cast your mind back to April 2023. The Parliamentary Committee on Long COVID released their report, making 9 recommendations. One of these was to fund ME/CFS research and patient support, in particular, to implement the recommendations of the ME/CFS Advisory Committee’s 2019 report to the National Health and Medical Research Council (NHMRC).
Continue reading “Federal government will not update ME/CFS treatment guidelines”
This is Professor Brendan Murphy being questioned by Senator Jordan Steele-John about the NHMRC clinical guidelines for treating ME/CFS. These guidelines are over 20 years out of date and still recommend the harmful and debunked therapies of graded exercise therapy (GET) and cognitive behavioral therapy (CBT).
Continue reading “ME/CFS Australian Clinical Guidelines denied promised update”
I haven’t shared many personal updates recently, because I am drowning in relapse after relapse. Gasping for air, trying to survive as the waves crash over me again and again and again. I don’t know where it will stop. Every time I think I have reached stasis, the rug is pulled under me and I lose what little remaining functionality I have.
More hours spent prone in bed. More time spent using a wheelchair inside as my legs, which once carried me from couch to couch, on are failing me. Screen time, talking time, upright time, thinking time, fading away.
Following the Australian Parliamentary Inquiry into Long COVID, the Australian Government has committed $50 million in funding to what they term PASC (Post-Acute Sequelae of COVID-19). This funding is for 2023-2024 and comes from the Medical Research Future Fund (MRFF).
Continue reading “Australia’s $50m funding for Long COVID research – another boondoggle?”
This post is for Severe ME Day 2023, 08/08. This day is in honour of Sophia Mirza, who lost her life to Severe ME due to medical abuse. Read more about Sophia at the Severe ME Day website.
Just like poverty and homelessness, the existence of Severe ME is a political choice.
Three years in the making, and I’ve finally finished knitting my Grettir Jumper. A pattern by Jared Flood of Brooklyn Tweed, Grettir is a seamless, bottom up jumper knit in the round with various shaping options and a colourwork yoke.
Now that I’m catching up on all my Muna and Broad makes, I thought I’d share some Hyde T-Shirts I’ve made. The Hyde T-Shirt is “a loose fitting knit top for effortless and easy dressing.” It has a boxy fit with the choice of short or long sleeves.
I’m taking part in Blue Sunday 2023 – a fundraiser for ME organisations.
To join in Blue Sunday, simply have a morning tea at home and donate whatever you would have paid for it to an ME charity as listed on Anna’s @teapartyform.e website.
You don’t need to have the tea party to donate – please chip in via the link in Anna’s blog so she can keep track of donations.
Emerge, the Australian ME party, is listed and is my preferred charity!
Thanks Anna for organising this every year. ❤️
May 12 is International ME Awareness Day. I honestly don’t know what to say, after 13 years with this insidious illness. I know I’m a baby – there are ME elders out there who have been sick for decades, trapped in their rooms or beds while the world passes them by.
Chronically Siobhan 