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 โ ๐ 179 ๐ 74 ๐ฌ 9 ๐ 7
YouTube video by Re: News
ME/Chronic fatigue syndrome: The mysterious illness trapping people in their bodies
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 โ ๐ 33 ๐ 20 ๐ฌ 1 ๐ 1
NZ's Long Covid blind spot nothing short of a crisis
Analysis: Post-infection syndromes like Long Covid are nothing new โ 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 Zealandโs Long Covid blind spot has now reached crisis levels
#pwME ๐ณ๐ฟ
28.04.2025 21:00 โ ๐ 87 ๐ 30 ๐ฌ 1 ๐ 0
Honoured to represent Aotearoa NZ ๐ณ๐ฟ on the ๐ 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 โ ๐ 17 ๐ 4 ๐ฌ 3 ๐ 1
๐ฃ Itโs 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.
๐ ๐ซถ๐ผ ๐ to the 179 exerts who collaborated from 28 countries
ann-clinmicrob.biomedcentral.com/articles/10....
21.04.2025 06:11 โ ๐ 69 ๐ 38 ๐ฌ 1 ๐ 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 โ ๐ 16 ๐ 3 ๐ฌ 3 ๐ 0
Is NZ the worst country to have Long Covid?
Rohan Botica and Dr Anna Brooks have been researching how toย diagnose, treat post-acute infection syndromes like Long Covid in NZ.
2/
This week Dr Anna Brooks @drannanz.bsky.social and Rohan Botica from DysImmune Research Aotearoa followed up in response.
www.rnz.co.nz/national/pro...
#longcovid #MEcfs #PwME #CFS
01.12.2024 15:30 โ ๐ 5 ๐ 2 ๐ฌ 0 ๐ 0
Is NZ the worst country to have Long Covid?
Rohan Botica and Dr Anna Brooks have been researching how toย 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 โ ๐ 29 ๐ 10 ๐ฌ 2 ๐ 2
The impact of long Covid will be huge. So why is New Zealand doing nothing about it?
'You think it wonโt be you, then after your next inevitable Covid-19 reinfection, it is, and youโre left to wonder why nobody stepped up.'
Co-founder of www.dysimmune.nz writing an opinion piece in The Spinoff โ
"almost five years into the pandemic, not only are there still no treatments for #LongCovid, there arenโt even any diagnostic tools โ and we donโt seem overly interested in finding them."
thespinoff.co.nz/science/30-1...
29.10.2024 21:06 โ ๐ 30 ๐ 17 ๐ฌ 1 ๐ 0
Fantastic interview with @edyong209.bsky.social โ 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 โ ๐ 126 ๐ 50 ๐ฌ 3 ๐ 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 โ ๐ 6 ๐ 11 ๐ฌ 1 ๐ 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 โ ๐ 10 ๐ 11 ๐ฌ 0 ๐ 0
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 โ ๐ 3 ๐ 0 ๐ฌ 1 ๐ 0
Studies โ Post-Viral Research Aotearoa
#LongCovid & #MECFS biomed research ๐ณ๐ฟ
๐จReminder for those in Ao/NZ. We are still recruiting for our biomarker discovery study
๐จWe have exciting intl collaborations to explore immunometobolic dysfunction, but just lack ๐ฐ support to operate at pace
๐จTo sign up or find more info: www.pvra.nz/donate
28.10.2023 01:40 โ ๐ 38 ๐ 38 ๐ฌ 4 ๐ 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 โ ๐ 4 ๐ 0 ๐ฌ 1 ๐ 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 ๐ฐ allows ๐๐ฝ
28.10.2023 01:54 โ ๐ 5 ๐ 0 ๐ฌ 1 ๐ 0
Studies โ Post-Viral Research Aotearoa
#LongCovid & #MECFS biomed research ๐ณ๐ฟ
๐จReminder for those in Ao/NZ. We are still recruiting for our biomarker discovery study
๐จWe have exciting intl collaborations to explore immunometobolic dysfunction, but just lack ๐ฐ support to operate at pace
๐จTo sign up or find more info: www.pvra.nz/donate
28.10.2023 01:40 โ ๐ 38 ๐ 38 ๐ฌ 4 ๐ 0
Long COVID research risks losing momentum โ 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 โ 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 โ ๐ 29 ๐ 15 ๐ฌ 0 ๐ 0
Just getting started over here! Hi bluesky peeps! ๐๐ผ
16.10.2023 19:20 โ ๐ 24 ๐ 2 ๐ฌ 2 ๐ 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. ๐ฐ
16.10.2023 17:43 โ ๐ 90 ๐ 33 ๐ฌ 3 ๐ 2
Independent global health news written by experienced journalists. Non-profit media company with HQ in Geneva, Switzerland.
Sign-up for daily email news alerts: http://healthpolicy-watch.news
Discover the #ImmuneSystem with #StructuralBiology. We ๐ powerful #Tcells and #viruses. From one of my student โthe GRAS is greener in our labโ. #scienceIsFun
๐งฌ The worldโs biggest study of genetic causes of #MECFS. Launched September 2022. ๐งฌ decodeme.ed.ac.uk
Cofounder @dreamwidth.org / disabled queer cat lady / running social media since before it was "social media" and Trust & Safety since the dawn of time / do not cite the deep magic to me, I wrote it / no, I'm allergic to that, too
The Lancet Regional Health-Europe publishes #OpenAccess research that advocates change in clinical practice & health policy in Europe.
๐ https://www.thelancet.com/journals/lanepe/home
A global network for infectious disease clinical studies.
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๐๐ณ๏ธโ๐๐ณ๏ธโโง๏ธ โฟ๏ธ ๐ท๐จ๐ฆ AuDHD #ActuallyAutistic, MG. Shepherd mason bees. Love animals/kids. General musings, rants, politics site for a Cdn artist and writer with 10 books. Basic sourpuss. Happy to see resisters here. (I block if you block GFMs.)
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MitoAmbassador, metabolism enthusiast. Thriving to solve mechanisms of diseases and use the knowledge to benefit the patients. Interested in science politics and communication. Academy professor in University of Helsinki, Faculty of Medicine.
Assistant professor @WUSTLmed Biochemistry & Molecular Biophysics. Mitochondria, metabolism, and cell signaling. Mom of 2. Advocate for women in science. www.niemilab.com
Assistant Professor at the Van Andel Institute. Alum of: Rutter Lab, UT Austin, Carleton College. Love mitochondria, my girls, running, good food & good friends.
Mitochondriac ๐ฌ Postdoc @EPFL Manley lab of Experimental Biophysics ๐งช Ph.D. @HelsinkiUni ๐ฆ๐ท๐ซ๐ฎ๐ช๐บ๐จ๐ญ๐ณ๏ธโ๐ (he/รฉl)
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Hopeless mitochondriak. Professor at McGill Neuro_MNI. Opinions my own.
Assistant Professor at Uni Birmingham, ๐ฌ๐ง working on mitochondrial diseases, stress signalling, metabolism and ferroptosis.
Hobby science artist ๐จ
http://www.sofiaahola.com
PhD ๐ซ๐ฎ @helsinkiuni | Postdoc ๐ฉ๐ช @mpiage @cecad
I still like small data but I'm not opposed to big data. We study #metabolism, #genetics, #pediatric inborn errors & cancer.
Professor @hhu_de Mitochondrial Biology ๐งฌ | Institute of Biochemistry and Molecular Biology I | mitochondria, mtDNA and mitophagy http://bit.ly/bumb1