Nicky

When Journal, Scientific Society, and Community Values Clash January 24, 2025 Hilda Bastian Science Communication Image with 3 young people in current times are watching a medieval castle pulling up a drawbridge. One is saying, "Well, that was certainly a choice!" A process I’ve been involved with at a journal recently exploded. It was meant to resolve a controversy about a publication, not make a new public conflict unavoidable. So I wanted to understand how it happened, and what it would take to resolve the problems we now face. At the heart of this rupture lie questions about unacknowledged competing values when a scientific society’s journal is struggling with openness and post-publication criticism. It’s hard to see how things can improve if they remain unspoken.

"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

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…

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...

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.

"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

Canada The Canary: A woman from Canada with severe ME has been approved for MAiD - but she wants to live About Marcia Doherty who has battled severe ME/CFS for decades which is under-recognised in British Columbia's medical system, leaving her without critical care. She therefore has to rely on crowdfunding to survive. Now she has been approved for Medical Assistance in Dying (MAiD), despite desperately wanting to live. She has launched a petition titled: Prevent Marcia's Avoidable Death.

"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

A pretend polaroid shows a very Christmassy Chris Ponting posing for a photo holding a #ThereForME Christmas card. He is wearing a very fetching Santa hat and a tinsel garland The image on the card shows two presents, one labelled "patient safety", the other "research". The photo is labelled "11". The design is in the #ThereForME colours.

This second image displays Chris’s handwritten message. It reads “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”

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”

#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!

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/

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

Table showing treatments and their effectiveness for Long Covid and ME

🎁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...

A pretend polaroid shows Natasha Devon posing for a photo holding a #ThereForME Christmas card. The image on the card shows two presents, one labelled "patient safety", the other "research". The photo is labelled "X". The design is in the #ThereForME colours.

This second image displays Natasha Devon’s handwritten message. It reads “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”

@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

A pretend polaroid shows Dr William Weir posing for a photo holding a #ThereForME Christmas card. The design shows two presents, one labelled "patient safety", the other "research". The photo is labelled "1".

This second image displays Dr Weir's handwritten message. It reads “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”

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”

YouTube video by Broken Battery ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

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?...

A travesty that this paragraph was included in the article. Cell phones weren’t t even around 20+ decades ago when many hundreds of thousands of people developed ME.

Parliamentary Friends of ME/CFS 11am for 11.15am start Monday 18 November 2024 Australian Parliament House Canberra Committee Room 154 Join by Zoom: https://www.emerge.org.au/parliamentary-friends Agenda Welcome & Context, introduce Minister for Health and Aged Care, The Hon Mark Butler MP Anne Wilson, CEO, Emerge Australia Minister for Health and Aged Care Opening Remarks The Hon Mark Butler MP Introduction & Housekeeping Peta Lange, Chief Counsel, Public Affairs, Ogilvy PRANZ Video Presentation Megan and Angus, with thanks to ME/CFS South Australia Welcome from Friends of ME/CFS Committee Chair Senator Jordon Steele-John Clinical Guidelines Update Alan Singh, Executive Director, Research Quality Advice, NHMRC Call for Government Investment in ME/CFS Clinical Education Peta Lange Video Presentation Nicola & Bruce, with thanks to ME/CFS South Australia The case for Clinical Education Dr Richard Schloeffel OAM, Medical Director, Emerge Australia Call for Government Investment in Patient/Health Services Peta Lange Address from ME/CFS Australia Penelope McMillan, Spokesperson, ME/CFS Australia Address from ME Advocacy Network Australia Carla, ME Advocacy Network Australia Call for Government Investment in ME/CFS Research Peta Lange The case for ME/CFS Research Funding Professor Paul Fisher, Chair, Emerge Australia MSAC Closing Remarks Dr Mike Freelander MP, Member for Macarthur Reflections and Wrap Up Anne Wilson, CEO, Emerge Australia Closing & Invitation to Light Lunch for Attendees at Parliament House Please note: Order of topics may change to accommodate MPs' availability. Q&A will occur between speakers.

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

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

🇨🇿🇫🇮🇮🇪🇬🇷🇱🇺🇸🇪🇵🇱🇧🇪🇫🇷🇪🇸🇱🇹🇲🇹🇪🇪🇸🇰🇳🇱🇸🇮🇨🇾🇱🇻🇭🇺🇷🇴🇵🇹🇩🇪🇭🇷🇮🇹🇦🇹🇬🇷🇧🇬🇳🇴🇱🇮🇨🇭🇷🇸🇲🇪

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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

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

📌 ME/CFS Feed pinned post 📌

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

bsky.app/profile/did:...

A lightbulb that is turned on and the inner workings of the bulb spell our the word "roadmap." Text underneath: Tell the NIH to fund the ME/CFS Research Roadmap now!

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

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

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

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.

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...

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...

Excellent free CME on #MECFS & #LongCovid

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%!

Horrible history of #MyalgicEncephalomyelitis - How medical misogyny & decades of medical malfeasance by a faction of psychiatry led to no treatments for #MECFS & #LongCOVID

My story here: illustratorinterrupted.blogspot.com/2021/05/i-caug…

#MEAwarenessWeek #MillionsMissing #12May #VeryLongHauler

While not believed to be the cause of #MECFS, #WASF3 could be a factor in muscles not working properly for at least a subset of those with the disease, Hwang said. Researchers are now looking at how to reduce WASF3 levels in patients. #PwME

Hello! We're so glad that you've joined us here. If you're new to us, we are Open Medicine Foundation (OMF). We're driving ME/CFS and Long COVID research forward with the end goal of finding effective treatments and a cure. Learn more about us at www.omf.ngo.