News from Aotearoa/New Zealand and the Pacific Islands

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/

 

A similarly framed article — The Conversation: Success in treating persistent pain now offers hope for those with Long COVID