Fix me or take me: The ballad of Rob Baker Twenty summers after his blossoming cricket career was forever cut short, the former Australia U19 captain and WA prodigy reveals for the first time the full extent of a decade-long physical and mental battle that almost cost him his life https://www.cricket.com.au/news/fea...ndrome-virus-illness-hussey-katich/2021-12-10
It was a very good piece. So many parts resonated with me: I've always described feeling 'poisoned' or 'hungover'. Similarly, a close friend could always spot when I was really unwell. She said my eyes would become glassy and my skin would be very pale. Sadly, the Australian medical community still can't comprehend it.
James Cook University This is a survey about the time to reaching diagnosis and re-diagnosis of women with chronic conditions in Australia. Contact us: lea.merone@my.jcu.edu.au, lea@doctors.org.uk Project timeline: January-June 2022 https://jcu.syd1.qualtrics.com/jfe/form/SV_9v2dfyqUg3IuuWy
Aquatic therapy is graded exercise in a pool. I was given a sheet of paper that was an exercise plan with time increases. Aquatic therapy only works when the patient is at a place where they can increase their activity. I was beginning to feel like I might live again. I was coming off of medication. I had to become more active at home before I could start aquatic therapy. I was able to comfortably travel to and from the YMCA, before I could begin the exercises. I know some of the patients dropped out of our study because they wasn't at a place where they could handle short term PEM. Starting the therapy to soon can lead to crashes that make MECFS much worse. I'm guessing many people with long covid are going to learn that hard lesson. My heart goes out to the young woman in the video, I hope she waits before trying GET in a pool.
The Australian GP organisation still has a section on GET for CFS. David Tuller has written about it. See this thread: Australia: RACGP: GET for CFS
Another excellent video from Emerge with an interview of an ME/CFS sufferer: Or on social media if you'd like to share it: I found this video particularly heart-breaking.
This is my story. Yet when I used the word hangover recently with a consultant in rehabilitation, she only raised one eyebrow.
I got an eye-roll. "Worst flu of my life combined with a hangover" was used mockingly against me in a specialist's report to my employer.
But that is what it is , isn't it? Mind you, it is perhaps not as serious as unfitness to practice medicine.
From an email: "Emerge Australia’s Online Community Groups pilot project is in its final phase! We are pleased to announce that our final groups are now open for bookings. Now is the time to confirm your place, booking in for a peer support group that suits you. We have groups for people living with ME/CFS as well as their carers. All groups are kicking off in February and March 2022. ... Bookings are essential and are now open for the following groups: Young People Aged 18-24 - starts Tuesday 22 February Regional Folk - starts Monday 21 February Experienced MEEPS (people who live with ME/CFS) - starts Tuesday 15 February Crafting Group for People Living with ME/CFS - starts Tuesday 22 February Carers of Adults Living with ME/CFS - starts Tuesday 8 February Carers of Mostly Bedbound People Living with ME/CFS - starts Thursday 3 March Carers of Young People Living with ME/CFS (two groups scheduled) - Group 1 starts Thursday 10 February, Group 2 starts Tuesday 1 March Full details of the groups, including information about the facilitators and bookings, can be found by clicking the group names, or by visiting our website."
2022 Twitter thread where people express support and sympathy for ME/CFS patients Dr Lea Merone of the University of Queensland notes in a twitter thread She may be a useful ally for some advocates.
The new Emerge CEO has had some good input into this piece on Long Covid. Unfortunately much of the article is about 'fatigue'. I know I sound like a broken record, but this misplaced obsession with fatigue diminishes the hellishness of post-viral illnesses.
weird isn't it - you'd think more of them would admire the Oliver Sacks stuff and have (if they didn't innately have it) learned to look into that. Their attitude seems so backwards looking to decide that insight from the person living in the body is 'irrelevant'. Someone is giving them bum steers during their training and onwards.
In this story on Long Covid, an Australian GP makes the link to ME/CFS and actually admits that medicine has treated patients badly and "we owe these people" (at 3 minutes, 15 seconds): https://twitter.com/user/status/1489144208892043265
Yeah, this made me happy. Quite a bit of the detail was speculative, but the message that there is a biological underpinning, and that there needs to be more research came through really well. Thanks for sharing it @Art Vandelay. The Project is a tv program watched by a lot of people - googling suggests 600,000 to 700,000 people a night. And Waleed, the guy who narrated the piece, has a high profile in Aus media.
Yes, the doctor at the end was excellent. Not so the other person on the panel who made a stupid joke insinuating only doctors were guilty of treating pwME badly. Pity the doctor didn't get a chance to reply because he could have pointed the finger straight back at the media for being just as guilty.
