Patients with severe ME/CFS need hope in the form of evidence-based interventions, not opinions.
Our evidence-based rebuttal to *that* BMJ opinion piece published last week.
This has been authored by a coalition of 19 doctors, scientists and patient advocates from around the world, with now 80+ signatures of support from the scientific community.
www.bmj.com/content/389/...
21.05.2025 13:14
π 180
π 73
π¬ 9
π 7
ME/Chronic fatigue syndrome: The mysterious illness trapping people in their bodies
YouTube video by Re: News
Today is #InternationalMEawarenessDay recognising the #MillionsMissing with #MECFS.
One story from NZ documenting how families have to create their own health system.
www.youtube.com/watch?v=DsOA...
12.05.2025 01:21
π 33
π 21
π¬ 1
π 1
NZ's Long Covid blind spot nothing short of a crisis
Analysis: Post-infection syndromes like Long Covid are nothing new β but pandemic-scale waves of a novel virus exposed just how ill-prepared we are to handle them.
"Both #LongCovid and #MECFS are under-recognised, not because they are rare, but because clinicians lack the tools and training to adequately detect the systemic dysfunction they reflect"
@drannanz.bsky.social on how New Zealandβs Long Covid blind spot has now reached crisis levels
#pwME π³πΏ
28.04.2025 21:00
π 87
π 30
π¬ 1
π 0
Honoured to represent Aotearoa NZ π³πΏ on the π stage as part of the lead authorship team behind this global #LongCovid consensus
28 countries, 179 experts representing clinicians, researchers & lived experience.
An important step toward better care, research & recognition
doi.org/10.1186/s129...
22.04.2025 02:11
π 17
π 4
π¬ 3
π 1
π£ Itβs finally out out - initial guidance to address the spectrum of LC as a disease & reinforces the need for translational research & large-scale treatment trials for treatment protocols.
π π«ΆπΌ π to the 179 exerts who collaborated from 28 countries
ann-clinmicrob.biomedcentral.com/articles/10....
21.04.2025 06:11
π 70
π 38
π¬ 1
π 4
Clear immune markers remain a challenge, & is a core focus of our research. Ie we are looking at 40+ markers using high dimensional cytometry approaches and 'exhaustion' markers are not as clear-cut as it might seem... immune 'signatures' may be more informative & we focus on both adaptive & innate
02.12.2024 00:05
π 16
π 3
π¬ 3
π 0
Is NZ the worst country to have Long Covid?
Rohan Botica and Dr Anna Brooks have been researching how toΒ diagnose, treat post-acute infection syndromes like Long Covid in NZ.
My co-founders of dysimmune.nz on Radio NZ.
"Rohan Botica and @drannanz.bsky.social are two of the founders of DysImmune Research Aotearoa focusing on immune dysfunction research to help understand, diagnose, treat post-acute infection syndromes."
#LongCovid #MECFS
www.rnz.co.nz/national/pro...
30.11.2024 00:31
π 29
π 10
π¬ 2
π 2
The impact of long Covid will be huge. So why is New Zealand doing nothing about it?
'You think it wonβt be you, then after your next inevitable Covid-19 reinfection, it is, and youβre left to wonder why nobody stepped up.'
Co-founder of www.dysimmune.nz writing an opinion piece in The Spinoff β
"almost five years into the pandemic, not only are there still no treatments for #LongCovid, there arenβt even any diagnostic tools β and we donβt seem overly interested in finding them."
thespinoff.co.nz/science/30-1...
29.10.2024 21:06
π 30
π 17
π¬ 1
π 0
Fantastic interview with @edyong209.bsky.social β more timely with today's publication of one of the first major #LongCovid papers for 2024.
The psychosomatic model for #MECFS has caused immense harm to patients, families, medicine itself and society generally.
www.nature.com/articles/s41...
05.01.2024 00:06
π 126
π 50
π¬ 3
π 2
Applications for this @salivadirect.bsky.social role are still possible by sending a CV, cover letter, and salary requirements to brittany@salivadirectinc.org.
This is an exciting role to help guide future scientific activities and collaboration in the saliva space!
docs.google.com/document/d/1...
18.11.2023 13:12
π 6
π 11
π¬ 1
π 1
Please share! Non-profit SalivaDirect, Inc. is seeking a Scientific Director to lead all things research, development, and collaboration. This remote role will work closely with and be supported by some truly incredible colleagues.
www.linkedin.com/jobs/view/37...
12.09.2023 21:45
π 10
π 11
π¬ 0
π 1
Hi Karyn our study is for 16yrs+ sorry & still a bit tricky to recruit out of our region at the moment. I'm hoping there will be interest to also do <16yrs/children, however funding for biomed research has never been a priority. All the best with your 14yo + do check-out
www.longcovidkids.org
20.11.2023 06:46
π 3
π 0
π¬ 1
π 0
Studies β Post-Viral Research Aotearoa
#LongCovid & #MECFS biomed research π³πΏ
π¨Reminder for those in Ao/NZ. We are still recruiting for our biomarker discovery study
π¨We have exciting intl collaborations to explore immunometobolic dysfunction, but just lack π° support to operate at pace
π¨To sign up or find more info: www.pvra.nz/donate
28.10.2023 01:40
π 37
π 37
π¬ 4
π 0
We did meet a few months back to discuss working together, yes. I'm just juggling a lot, so thanks for the reminder to touch base with them again! I'm aiming to visit Melbourne soon for colab purposes
28.10.2023 02:37
π 4
π 0
π¬ 1
π 0
It's mostly Auckland (UoA) at the moment due to funding constraints and logistics. We need blood samples processed back in my lab relatively quickly. We are working on doing fly-in-fly out day visits to other areas once π° allows ππ½
28.10.2023 01:54
π 5
π 0
π¬ 1
π 0
Studies β Post-Viral Research Aotearoa
#LongCovid & #MECFS biomed research π³πΏ
π¨Reminder for those in Ao/NZ. We are still recruiting for our biomarker discovery study
π¨We have exciting intl collaborations to explore immunometobolic dysfunction, but just lack π° support to operate at pace
π¨To sign up or find more info: www.pvra.nz/donate
28.10.2023 01:40
π 37
π 37
π¬ 4
π 0
Long COVID research risks losing momentum β we need a moonshot
Investing US$1 billion every year for the next ten years into long COVID research could improve the lives of millions and save trillions in economic costs. Investing US$1 billion every year for the ne...
Long Covid research:
"We call for a moonshot for long COVID, a commitment β from the US govt - to invest at least US$1 billion annually over the next 10 years to address the problem..."
NZ govts investment in #LongCovid biomed research to date? Approx $0
www.nature.com/articles/d41...
18.10.2023 17:14
π 29
π 15
π¬ 0
π 0
Just getting started over here! Hi bluesky peeps! ππΌ
16.10.2023 19:20
π 24
π 2
π¬ 2
π 0
Scientists Offer a New Explanation for Long Covid
In some patients, remnants of the coronavirus in the gut may stifle production of serotonin, an important neurotransmitter, researchers suggest.
A new study suggests people with long covid are experiencing a serotonin reduction triggered by remnants of the virus lingering in the gut, which could explain memory problems and some neurological and cognitive issues. π°
16.10.2023 17:43
π 90
π 33
π¬ 3
π 1