Nicky
oceandreaming50.bsky.social
Nicky
@oceandreaming50.bsky.social
Former surfer and scuba diver. Lover of the ocean and environment.
24yrs ME, POTS, TN
#pwME #millionsmissing #MEScience
Location: Australia
Reposted by Nicky
"When Journal, Scientific Society, and Community Values Clash" by Hilda Bastian @hildabast.bsky.social

absolutelymaybe.plos.org/2025/01/24/w...

Long, thoughtful blog on the Cochrane Exercise Therapy for CFS review saga.

Nice to get a couple of mentions

#MEcfs #CFS
January 24, 2025 at 10:30 PM
Reposted by Nicky
Yet another example of people in power dicking over ME patients. We need journalists to grab this beast by the horns & connect all these seemingly unrelated incidents that add up to a very big health & human rights scandal #GreatestMEdicalScandal

absolutelymaybe.plos.org/2025/01/24/w...
When Journal, Scientific Society, and Community Values Clash - Absolutely Maybe
A process I’ve been involved with at a journal recently exploded. It was meant to resolve a controversy about a publication, not…
absolutelymaybe.plos.org
January 25, 2025 at 12:27 AM
Reposted by Nicky
"Are you, or is someone you love, living with long Covid symptoms? We want to hear about your experience.

- How is it impacting your life?
- Do you feel that you are receiving appropriate supports?
- Have you come out the other side of it?"
www.thejournal.ie/long-covid-r...

#LongCovid
Have you been affected by Long Covid? We want to hear from you
The Journal wants to hear from readers who are living with or have recovered from long Covid.
www.thejournal.ie
December 31, 2024 at 8:01 PM
Reposted by Nicky
"The Canary: A woman from Canada with severe ME has been approved for MAiD - but she wants to live"

www.thecanary.co/global/world...

Image is from Science for ME weekly update

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
December 23, 2024 at 6:32 PM
Reposted by Nicky
Dec 11: Prof Chris Ponting is #ThereForME! @cgatist.bsky.social leads @decodemestudy.bsky.social, the world’s largest ME genetic study.

“My Christmas wish for people with ME and Long Covid is: Many scientific breakthroughs – a ‘True Dawn’ bringing us much closer to effective therapies. Chris xx”
December 11, 2024 at 9:00 AM
Reposted by Nicky
#UniteToFight, this brilliant patient organised conference on #longcovid and #mecfs happened May 2024.

If you missed it, it's up in full on their youtube channel, with uniformely briliiant speakers and presentations. Well worth a watch if you have the spoons.

These experts are our true allies!
Please publicise

youtube.com/@unitetofigh...

Suscribe to YouTube Channel
@Unite2Fight2024

Talks from 40 plus world experts

explaining the state of research on #LongCovid & #MECFS in May 2024

Including @Sunny_Rae1 @resiapretorius @PutrinoLab
@KraterMartin @VirusesImmunity @Daltmann10
UniteToFight
We envision a world free of Long Covid & ME/CFS stigmatization, where every individual can thrive. Our mission is to create an inclusive, interactive space to address unmet needs and drive societal ch...
youtube.com
December 3, 2024 at 4:00 PM
Reposted by Nicky
So excited to finally see this study out in pre-print! This study is the largest of its kind to date: Using data from 4,244 people with #LongCOVID, #MECFS and other complex chronic illnesses, we took hundreds of thousands of data points across hundreds of
www.researchsquare.com/article/rs-5...
1/
Smartphone-based monitoring of heart rate variability and resting heart rate predicts variability in symptom exacerbations in people with complex chronic illness
Background: Complex chronic conditions like Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome involve energy limitations and changes in heart rate variability (HRV) and resting heart r...
www.researchsquare.com
December 2, 2024 at 9:00 PM
Reposted by Nicky
Strong new evidence for T cell exhaustion in myalgic encephalomyelitis (ME/CFS) reflecting chronic viral infection, relevant to #LongCovid, and possible path to treatment candidates
www.pnas.org/doi/epub/10.... @pnas.org
December 2, 2024 at 8:46 PM
Reposted by Nicky
🎁This paper from the TREATME Survey is a real gift to the community from Dr Ecker & OMF
🤩c. 4000 patients involved

Top treatments
🔹Maraviroc
🔹IVIG
Shows Pacing is vital 1/3
www.medrxiv.org/content/10.1...
December 3, 2024 at 10:06 AM
Reposted by Nicky
@lbc.co.uk presenter @natashadevon.bsky.social is #ThereForME!

Her message: “For people affected by ME and Long Covid, please know that you are in my thoughts this Christmas and I will continue to advocate for you whenever I can. Sending you so much love, Natasha Devon”

#pwME #pwLC
December 3, 2024 at 9:00 AM
Reposted by Nicky
Dec 1: It's Dr William Weir, who has worked with and supported patients with ME for decades.

His message: “Best wishes for Christmas to everyone with ME or Long Covid. You all deserve excellent and appropriate treatment, with a full understanding of its causes. William Weir”
December 1, 2024 at 9:00 AM
Reposted by Nicky
New Video: @georgemonbiot.bsky.social describes the treatment of #MECFS as "The Greatest Medical Scandal of the 21st century". The video explores the impact of ineffective & harmful treatments & how they were defended by the scientific & media establishment.

youtu.be/RiwX9Y0NbiQ?...
ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
YouTube video by Broken Battery
youtu.be
November 21, 2024 at 12:42 PM
Reposted by Nicky
Aussies with #mecfs!

A reminder that the next Parliamentary Friends of ME/CFS meeting will be held in Canberra tomorrow, 11am-1pm AEDT. The Minister for Health will open the meeting, which is a huge coup!

It’s not too late to register to watch: https://www.emerge.org.au/parliamentary-friends
November 17, 2024 at 1:16 AM
Reposted by Nicky
Thanks for following if you don't know me.

I've just passed the 10 year anniversary of when I began running marathons for ME research.

I'm aiming to raise funds for biomedical projects whilst connecting and highlighting the stories of people with ME that I meet

🇨🇿🇫🇮🇮🇪🇬🇷🇱🇺🇸🇪🇵🇱🇧🇪🇫🇷🇪🇸🇱🇹🇲🇹🇪🇪🇸🇰🇳🇱🇸🇮🇨🇾🇱🇻🇭🇺🇷🇴🇵🇹🇩🇪🇭🇷🇮🇹🇦🇹🇬🇷🇧🇬🇳🇴🇱🇮🇨🇭🇷🇸🇲🇪
November 16, 2024 at 8:43 PM
Reposted by Nicky
Adding a thank you to Workwell Foundation and Long Covid Physio that have signed on as well!

Keep those signatures coming!

TODAY is the last day add your name. Let's speak with a strong unified voice!

US signers: bit.ly/FundRoadmapUS

International signers: bit.ly/FundRoadmapG...

#pwME #MECFS
Thank you for signing our letter to NIH!
Open Medicine Foundation
Solve ME
Patient-Led Research Collaborative
ACT UP New York
Strategies for High Impact
Long COVID Justice
Body Politic
Long COVID Moonshot
Mass ME
Bateman Horne Center
ME International
CFS/ME Associazione Italiana od
World ME Alliance
November 15, 2024 at 5:36 PM
Reposted by Nicky
If there’s anyone looking for starter pack so they can connect with or listen to disabled voice, let me know and I can add you. The list is heavily skewed toward MECFS patients, many of whom are bedbound.

go.bsky.app/VPRy2ML
November 14, 2024 at 7:24 PM
Reposted by Nicky
📌 ME/CFS Feed pinned post 📌

Finds keywords of #mecfs #cfs #MEScience ME/CFS and #MEAwareness

bsky.app/profile/did:...
August 24, 2023 at 12:40 PM
Reposted by Nicky
TODAY is the last day to sign letter calling on the NIH to fund the ME/CFS Research Roadmap! Right now, we have over 8,000 signers. It will take ALL OF US to show that we are united in support of the roadmap.
US: bit.ly/FundRoadmapUS

International: bit.ly/FundRoadmapGlobal

#pwME #MECFS #LongCovid
November 15, 2024 at 8:14 PM
Reposted by Nicky
Aussies with #mecfs!

The next Parliamentary Friends of ME/CFS meeting will be held in Canberra on Monday (11am-1pm AEDT). The focus of the meeting will be: clinical guidelines and education, access to the NDIS, research funding, and chronic illness items under Medicare.

Register to watch via Zoom
Welcome! You are invited to join a webinar: Parliamentary Friends of ME/CFS Group Meeting. After registering, you will receive a confirmation email about joining the webinar.
Australian Parliament House Canberra
us02web.zoom.us
November 15, 2024 at 4:50 AM
Reposted by Nicky
Thanks Julie just trying to work it all out. I might have to focus on twitter and only fully move over if we are forced to do it. Not sure I can do both atm! I'll try to post on both platforms.
October 16, 2023 at 7:58 PM
Reposted by Nicky
My column this week is about how even the most basic Covid precautions have been stood down, leaving clinically vulnerable people trapped in their homes and accelerating what threatens to become a major surge this autumn. TL;DR: they couldn't give a damn about us. www.theguardian.com/commentisfre...
October 16, 2023 at 5:45 AM
Reposted by Nicky
Overjoyed to announce my Concise Clinical Review of ME/CFS in Mayo Clinic Proceedings (with updated diagrams!) Very glad to have worked with
Stephanie Grach, and Ravi Ganesh and Tony Chon on this! #MedEd #MedTwitter 🧵 www.mayoclinicproceedings.org/article/S002...
Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease often preceded by infection. There has been increased interest in ME/CFS recently because of its significant...
www.mayoclinicproceedings.org
October 7, 2023 at 4:03 PM
Reposted by Nicky
Excellent free CME on #MECFS & #LongCovid
Bateman Horne Center:
📘🩺Updated Medscape #CME on #MECFS in the age of #LC with Drs. Bateman, Komaroff, and Systrom.
Share especially with #physician and #nurse colleagues who may obtain CME for watching the webinar!

www.medscape.org/viewarticle/...
October 9, 2023 at 10:22 PM
Reposted by Nicky
Great to see Dr Asad Khan on here: @doctorasadkhan.bsky.social !

A wonderfully intelligent and compassionate advocate for #LongCovid, #MECFS and associated illnesses.

Follow 100%!
October 9, 2023 at 10:45 PM