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Beth F W

@omfcharitymugs.bsky.social
219 followers 815 following 36 posts

Severe ME/CFS patient since 2006, fundraising for the Open Medicine Foundation, all proceeds from all sales go directly to OMF, Worldwide shipping🩵 omfcharitymugs.teemill.com

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Reposted by Beth F W
George Monbiot @georgemonbiot.bsky.social · 24/09/2026
Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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sarah boothby @swastrosarah.bsky.social · 10/08/2026
petitions.senedd.wales/signatures/2... Please sign and share. You do not have to be resident in Wales to show your support. #pwME #LongCovidME
petitions.senedd.wales
Petition: Take urgent action so those with Severe Myalgic Encephalomyelitis in Wales are no longer left without vital medical care
Service provision for people with Myalgic Encephalomyelitis (ME) remains inconsistent across Wales. In particular, major concerns persist regarding access for those with the severe form of the conditi...
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Beth F W @omfcharitymugs.bsky.social · 08/08/2026
My 20th year with #SevereME, no wisdom just surviving, a few days ago I sold one mug for OMF, first one this year,a weirdly fitting metaphor of how little I can do but still stubbornly holding on
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Bateman Horne Center @batemanhornecenter.bsky.social · 24/07/2026
In Their Words This August, we're inviting people living with severe ME/CFS and caregivers to share their stories. Video, audio, written, or an image with a reflection, whatever feels possible. Submissions close Wednesday, August 5. Share your voice: bit.ly/4ftJXq5
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Open Medicine Foundation (OMF) @openmedf.bsky.social · 28/05/2026
As May Momentum comes to a close, we want to leave you with a taste of why our researchers do what they do. Watch the full conversation here: youtu.be/FPhECAf7gz0
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Adam @abrokenbattery.bsky.social · 30/05/2026
“I don’t think I can think of another condition that would be treated this way.” Dr Anna Brooks, Liggins Institute. A powerful opening to Zoe Madden-Smith’s award-winning RE:News documentary on #MECFS
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Anil van der Zee @anilvanderzee.bsky.social · 01/05/2026
‼️ BURIED ALIVE WITH M.E.‼️ For #MEAwarenessMonth I made a severe ME body‑bag “dance” film about death within the ME community. youtu.be/XhrAhGkrGuQ?... I also joined the online expo ME Kills by A Quiet Storm, which goes live on May 12th, 1/ #pwme #myalgicE #millionsmissing
youtu.be
Buried Alive with M.E. (with subtitles)
YouTube video by Anil about ME
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Tessa Munt MP 🔶 @tessamunt.bsky.social · 10/04/2026
Initial results from the Big Survey of >5000 pwME are deeply disturbing… disbelief by NHS healthcare professionals, made to feel their ME was their fault, traumatic encounters with clinicians. This can not continue. More on 11 May👇🏽. Thanks @kacheston.bsky.social and @actionforme.bsky.social.
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Anna Wood @annakwood.bsky.social · 09/04/2026
Help! I'm looking for people with ME/long covid or similar who do something creative (eg painting, photography) that is inspired by nature to feature in my book. Ideally people more severely affected than me, so bed bound or partially bed bound #mecfs
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Open Medicine Foundation (OMF) @openmedf.bsky.social · 26/03/2026
Nearly 20 years ago, Donni opened her own kindergarten. Four years in, everything changed. 🤝 She now supports OMF to find real answers for #MECFS & #LongCOVID. 🔗 Read Donni's story and join Hope Builders: www.omf.ngo/donni-beyond-the-glass ART: “BEYOND THE GLASS” by Donni
In "Beyond the Glass," Donni is reclined in an armchair, wrapped in a yellow blanket, facing a large window. Outside, life goes on — lush, bright, and just out of reach.
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Open Medicine Foundation (OMF) @openmedf.bsky.social · 15/03/2026
Today is #LongCOVIDAwarenessDay — a moment to recognize the reality facing hundreds of millions worldwide. 🌎 #LongCOVID is not a disease fading into the past. For many, it is a daily struggle with no clear end and no approved treatment in sight. 🔗 www.omf.ngo/2026-long-covid-awarene…
Graphic marking Long COVID Awareness Day on March 15, featuring a teal and gray awareness ribbon labeled "LONG COVID" on a dark-to-gray gradient background.
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Open Medicine Foundation (OMF) @openmedf.bsky.social · 15/03/2026
To honor #LongCOVIDAwarenessDay, Open Medicine Foundation (OMF) #MEAction Network Solve M.E. & Bateman Horne Center once again joined forces as #UnitedForME. We gathered a set of resources from our orgs to inform & empower:https://bit.ly/3Na4mX4
bit.ly
Long COVID Resources Hub 2026
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Open Medicine Foundation (OMF) @openmedf.bsky.social · 13/03/2026
From the OMF-supported MERC with @BatemanHorne: During a crash, #pwME may struggle to think or communicate clearly. Communication cards help patients point to needs like water, pain, light sensitivity, or emergencies. Find these cards in our Crash Survival Guide: bit.ly/44MgSS9
Printable “Critical Needs” communication cards. The sheet includes illustrated cards labeled Food, Hydration, Medicine, Toilet, Bathe, Brush Teeth, Fresh Clothes, Hygiene Wipes, and Change Sheets, plus two blank cards.Printable “Symptoms & Sensitivities” communication cards. Illustrated cards labeled I Can’t Speak, I Can’t Think, I Am Hot, I Am Cold/Chills, In Pain, Nausea, Cramps, Touch Sensitivity, Sound Sensitivity, Light Sensitivity, and Smell Sensitivity.
Printable “Comfort” cards with icons for Do Not Disturb, TV Remote, Phone/Computer/Tablet, Decide For Me, hot pack, cold pack, pillows, blanket, wash cloth, and eye masknine labeled icons: Severe Reaction (911), Call Doctor, Emergency Room, Can't Eat/Drink, Can't Sit Up, Can't Move Body, Can't Swallow, Difficulty Breathing, and Chest Pain. Two blank cards are included for custom use.
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Lucibee @lucibee.bsky.social · 04/03/2026
wtaf is Alastair Miller doing ANYWHERE NEAR an education session for GPs on ME???? 😱 www.pulsetoday.co.uk/news/clinica...
ME/CFS diagnosis and management among topics at free Pulse virtual event for GPs 

2 March 2026

GPs are invited to a free virtual event this month featuring sessions across a variety of clinical topics across public health and chronic conditions, including how to best support patients with ME/CFS.

The Pulse 365 event, on 24 March, is designed to support GPs in confident decision-marking as well as highlighting strategies for earlier diagnosis and management. Tickets can be found here.

‘ME/Chronic Fatigue Syndrome – not just tired all the time’ will be presented by Dr Alastair Miller consultant physician at the Royal Liverpool University Hospital.

This comes following the Department of Health and Social Care’s announcement last summer that GPs will play a key role in delivering care for people with mild and moderate ME/CFS under a new delivery plan.
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Cort Johnson @cortjohnson.bsky.social · 28/02/2026
Is the OMF’s ME/CFS BioQuest Study the Study We’ve All Been Waiting For? #MECFS www.healthrising.org/blog/2026/02...
healthrising.org
Is the OMF's ME/CFS BioQuest Study the Study We've All Been Waiting For? - Health Rising
The Open Medicine Foundation's huge Bioquest project has the potential to transform ME/CFS patients experience with doctors, dramatically enhance research and get drug companies finally interested in ...
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Nicky Proctor @nickyproctor.bsky.social · 26/02/2026
@ashleydaltonmp.bsky.social Your words “these must become never events” PLEASE INTERVENE TO SAVE LIFE Savannah has not eaten for 9 weeks. There are no NHS services for severe ME - 7 months since publication of the Delivery Plan for ME/CFS www.meresearch.org.uk/claims-of-nh...
meresearch.org.uk
Claims of NHS inaction over specialist services for severe ME cases – Savannah Victora-May
* Caution - This article contains a report of the medical condition and treatment of a person with severe ME* My body cannot take even a shred more of this. I’m not physically able to continue, I am s...
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Michiel @murtoz.bsky.social · 26/02/2026
#SaveSavannah #SevereMErgency #pwME please repost and boost the below. Nobody is willing to intervene. The health minister must step in and prevent a tragedy
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Michiel @murtoz.bsky.social · 24/02/2026
#pwME URGENT - looking for someone ME literate who can sit with Savannah in hospital in London from 4:30pm TODAY for a few hours. Travel will be reimbursed. Please share widely #SaveSavannah #SevereMErgency @tomkindlon.bsky.social @abrokenbattery.bsky.social @drelke.bsky.social
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Niko Suvisto @nikosuvisto.com · 12/02/2026
Hi! Our online art gallery, A Quiet Storm, will host an open call group exhibition on International ME/CFS Awareness Day, May 12, 2026. The submissions will open on March 12th. Our website is currently updated to a dark theme. Full statement below! 1/9 #MECFS #pwME #OpenCall #OnlineExhibition
A text: ‘Open call!’

Below it a hand-written text reads ‘Myalgic Encephalomyelitis Kills’.

A text: ‘An online Group Exhibition’.
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MEAction UK @meactionuk.bsky.social · 07/02/2026
MEAction UK is working on a survey of #pwME with the University of East Anglia (UEA) Medical School to assist in developing a research application. For more Info & take part: meaction.org.uk/news/2026/02... #MyalgicEncephalomyelitis
Help Us Advance ME Research move a blue and red strand of DNA.  Your input could lead to a blood test for ME.  Survey closes 27th February 2026. Blue background with MEAction UK and UEA logos in black.
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Adam @abrokenbattery.bsky.social · 05/02/2026
Tessa Munt MP highlighted Savannah’s case in Parliament. She said the Government’s ME delivery plan says avoidable deaths should be ‘never events’ but her critical condition was made worse by inadequate treatment and without specialist services cases like this will keep recurring.
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The Canary @thecanaryuk.bsky.social · 30/01/2026
NEW 🚨 A South London hospital is still putting severe ME patient Savannah's life at risk and a clinician who psychologises ME might be why. www.thecanary.co/uk/analysis/...
thecanary.co
London hospital STILL starving severe ME patient, Savannah — bias medical approach to blame
A South London hospital is still putting severe ME patient Savannah's life at risk and a clinician who psychologises ME might be why.
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Adam @abrokenbattery.bsky.social · 28/01/2026
Update shared by Action for ME: their Chief Executive, Sonya Chowdhury, is personally advocating for Savannah and supporting her case.
Reply from action for ME on Facebook
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David Tuller @davetuller1.bsky.social · 27/01/2026
I've taken three weeks of medical leave because of bruised ribs sustained in a fall on the pavement. I'm slowly trying to get back to work and catch up. Here's an insightful and moving piece someone sent me about living with severe ME. virology.ws/2026/01/27/t...
virology.ws
Trial By Error: An Essay on Living with Severe ME | Virology Blog
By David Tuller, DrPH I’ve been totally out of commission for three weeks while recovering from bruised ribs sustained in a fall. I have devoted most of my ...
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Open Medicine Foundation (OMF) @openmedf.bsky.social · 22/01/2026
A newly published protocol in npj Women's Health introduces the MELLOW study, a global collaboration between OMF’s Melbourne and Uppsala teams. 🔗 Read the full protocol: www.nature.com/articles/s44294-025-…. #WomensHealth #MECFS #LongCOVID #CircadianRhythm #HormoneResearch
Graphic showing three researcher portraits: Dr. Christopher Armstrong, Dr. Natalie Thomas, and Dr. Jonas Bergquist, with the title “A chronobiology-based protocol for multi-omic mapping of menstrual cycle and diurnal rhythms in ME/CFS and long COVID.”
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Open Medicine Foundation (OMF) @openmedf.bsky.social · 20/01/2026
OMF is proud to partner with Vumedi, a global education platform for healthcare professionals, to bridge research and clinical practice. Our expert-led content on #MECFS, #LongCOVID, and related diseases is now live—helping clinicians worldwide stay up to date with evidence-based learning.
Vumedi and Open Medicine Foundation (OMF) logos on a white background with an abstract network of connected dots and lines, representing collaboration and scientific research.
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The Canary @thecanaryuk.bsky.social · 22/01/2026
URGENT: An NHS hospital is starving a severe ME patient & has now stopped giving her fluids. Savannah has now lived with severe ME for several years - but the Queen Elizabeth Hospital in South London is putting her life at risk. @h-sharland.bsky.social has the story www.thecanary.co/uk/analysis/...
thecanary.co
An NHS hospital is starving a severe ME patient and has now stopped giving her fluids
Savannah has now lived with severe ME for several years - but the Queen Elizabeth Hospital in South London is putting her life at risk
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MEAction UK @meactionuk.bsky.social · 19/01/2026
Remember to sign up for our mailing list to keep informed about work. meaction.org.uk/contact #MyalgicEncephalomyelitis
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MEAction UK @meactionuk.bsky.social · 15/01/2026
#MEActionUK emailed @NHSEngland about incorrect info on its ME/CFS webpage. Our request will be 'added to their backlog for a member of the website team to pick up when there is capacity' bit.ly/3NoAFRF #MyalgicEncephalomyelitis #HealthEquality
bit.ly
Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS)
Read about myalgic encephalomyelitis (chronic fatigue syndrome or ME/CFS). It’s a long-term condition with a wide range of symptoms including extreme tiredness.
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Beth F W @omfcharitymugs.bsky.social · 19/01/2026
Petition on twitter I couldn’t quickly find on here so posting link, for those in UK, ‘Amend the 28-day rule for the Carer’s Allowance for carers giving hospital care’ petition.parliament.uk/petitions/75...
petition.parliament.uk
Petition: Amend the 28-day rule for the Carer’s Allowance for carers giving hospital care
Amend the Carer’s Allowance rules so unpaid carers continue to be paid their allowance after 28 days if they are still providing essential care in the hospital and require NHS trusts to confirm in wri...
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Adam @abrokenbattery.bsky.social · 19/01/2026
My #MECFS scandal explainer video has just passed 200,000 views. Given the level of interest, I’ve written a follow-up article covering key examples I didn’t include, as well as some developments since. medium.com/@abrokenbatt...
medium.com
ME/CFS Scandal Follow up
The ME/CFS scandal goes much deeper than my 27-minute explainer video. That was just an introduction — how for decades patients were told…
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Long Covid Advocacy @longcovidadvoc.com · 18/01/2026
“Wessely read a version of the writing & threatened to sue me if it didn’t include the other side.” - Mendenhall This raises serious questions about academic pressure, power, and whose voices shape the narrative around ME and Long Covid.
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The Sick Times @thesicktimes.org · 14/01/2026
People with the most severe #LongCOVID symptoms represent the most clinically urgent population, yet they remain absent from the evidence base that guides care. They are not beyond the reach of science; they are where real progress begins. Read more from @neurologistmom.bsky.social: bit.ly/49TMXdz
A young person lies in bed in a dark room, with an eye mask over their face and earplugs in. The text reads, "The Sick Times. Severe people may hold answers to Long COVID. They must be included in research. By Sevda Sarıkaya." "The most severely affected are not on the margins of Long COVID; they represent its truest and most revealing form. The future of Long COVID research will be measured not by how many trials are launched, but by how many lives they truly represent." - Sevda Sarıkaya, Severe people may hold answers to Long COVID. They must be included in research.
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rthm_health @rthm.bsky.social · 15/01/2026
Recent research shows blood from people with ME/CFS and Long COVID directly harms healthy muscle, reducing force, stressing mitochondria, and causing structural breakdown. Results implicate blood-borne drivers of muscle weakness, exertion intolerance, and PEM. 🔗 doi.org/10.1088/1758...
Recent Study: Muscle tissue exposed to blood from ME/CFS & Long COVID patients leads to severe muscular and mitochondrial deterioration

Source citation and arrow pointing right

Images of muscle tissue deteriorating in the background.
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Open Medicine Foundation (OMF) @openmedf.bsky.social · 15/01/2026
🛍️ Imagine if every item you added to your cart could help fuel OMF's vital #MECFS and #LongCOVID research. With iGive, you can shop online at 1,700+ stores, and a percentage of your purchase will go to OMF, at no extra cost to you. Shop & Support 👉 www.igive.com/welcome/lp19....
Graphic with the title “Shop with Purpose!” showing a phone with a shopping cart image and OMF logo. Steps on the right: Visit iGive (bit.ly/iGiveOMF), Sign up for a free account, Shop online — a percentage goes to OMF.
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#MEAction Network @meactnet.bsky.social · 08/01/2026
Take action today! Please sign our letter to the HHS Secretary urging him to recognize people with ME/CFS and Long COVID as “medically frail” so that their access to Medicaid is protected. freakinfrail.org This petition is the 1st step. #Medicaid #PwME #MECFS #LongCovid
Graphic with black background urging you to take action for the Freakin' Frail campaign. Text in center points you to www.freakinfrail.org. Text at bottom:" Sign today to help Protect Medicaid access for people with ME/CFS and Long COVID.
This petition is the first step in #MEAction's Freakin' Frail campaign to protect our community’s access to Medicaid."
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Open Medicine Foundation (OMF) @openmedf.bsky.social · 13/01/2026
On January 21 at 1:00pm ET, Linda Tannenbaum (CEO and Founder) and Danielle Meadows, PhD (VP of Research Programs) will host a webinar with the objective of answering your questions about OMF and its research. Register for the webinar: ow.ly/IyGz50XWboB Submit question: ow.ly/81OM50XWboA
Large text reads, 'INSIDE OMF: YOUR QUESTIONS, OUR ANSWERS.' There are two photos: on the left is Linda Tannenbaum smiling, and on the right is Danielle Meadows, also smiling.
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ThereForME @thereforme.bsky.social · 13/01/2026
Our #ThereForME blog is back! Today, Dr Katharine Cheston writes about her collaboration with @actionforme.bsky.social on the 2025 Big Survey. Katharine explains why large-scale charity surveys are so important for ME research and treatment, and how you can get involved. Link in next post 👇
"Working with Action for ME on the Big Survey, I've been struck by the important role that large-scale, charity-led surveys like this can play in building a clearer picture of what life with ME is really like - and in providing the evidence that can drive change." Dr Katharine Cheston. New #ThereForME Substack post.
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Katy B @katybrc.bsky.social · 02/12/2025
Utterly heartbreaking to hear that 20yr old #pwME Ella Copley has died Deepest condolences to her incredible Mother Jo who couldnt have fought harder for her @tessamunt.bsky.social @joplatt.bsky.social @ashleydaltonmp.bsky.social unless measures are taken urgently this will continue to happen 2 pwME
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Science for ME (S4ME) @s4me.info · 06/10/2025
Our latest News in Brief post has headlines and links to further reading for #MECFS and #LongCovid news, advocacy and research for the week of Sep 29-Oct 5. Topics: News, advocacy and articles Coming events Research news and commentary & Published research www.s4me.info/threads/news...
s4me.info
News in Brief - October 2025
This thread has a Science for ME 'News in Brief' post for each week in October 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
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Adam @abrokenbattery.bsky.social · 05/10/2025
On LBC, callers Ann and Annie told Natasha Devon that the rise in long-term sickness is linked to long Covid — and compared the lack of support to what people with #MECFS have faced for decades (10 mins) youtu.be/BoVpKmsTNFY?...
youtu.be
Natasha Devon - Long-term sickness call in
YouTube video by Broken Battery
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Niko Suvisto @nikosuvisto.com · 20/09/2025
Today is my birthday, and I’m turning 34. Do I feel my age? No. The perception of age vanished at some point while I became chronically ill. Still, there are fleeting moments when I’m reminded of it. 1/9 #MECFS #pwME #Photography @openmedf.bsky.social
A black and white photo inside a white frame: Niko, a white man with dark buzz cut hair and a beard, lying in bed. His head is resting on a pillow, and he’s looking at the distance. He’s wearing a grey sweatshirt.
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Open Medicine Foundation (OMF) @openmedf.bsky.social · 16/09/2025
This is the first strong evidence of a genetic contribution to #PEM in #MECFS. Full publication: translational-medicine.biomedcentral.com/articles/10....
translational-medicine.biomedcentral.com
Haptoglobin phenotypes and structural variants associate with post-exertional malaise and cognitive dysfunction in myalgic encephalomyelitis - Journal of Translational Medicine
Background Myalgic encephalomyelitis (ME) is a chronic, multisystem illness characterized by post-exertional malaise (PEM) and cognitive dysfunction, yet the molecular mechanisms driving these hallmar...
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Open Medicine Foundation (OMF) @openmedf.bsky.social · 16/09/2025
OMF Collaboration Investigates Molecular Basis of Post-Exertional Malaise (PEM) 👉 Read more from Dr. Moreau: www.omf.ngo/haptoglobin-.... Key findings: ➡️ After a mild stress challenge, #pwME showed a sharp drop in haptoglobin (Hp) levels, while healthy controls did not. (1/2)
omf.ngo
New Publication from OMF Collaboration Investigates Molecular Basis of PEM - Open Medicine Foundation
New publication reveals first strong evidence of a genetic contribution to post-exertional malaise (PEM) in ME/CFS.
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sarah boothby @swastrosarah.bsky.social · 13/09/2025
Visited for 3 minutes today. A NHS London hospital doing everything it can. The contrast with how it was before #MaeveInquest made me weep. Staff are protecting Savannah from visitors, without intruding on her autonomy. Very high bar. Strain could learn much from them. @ashleydaltonmp.bsky.social
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speckle48.bsky.social @speckle48.bsky.social · 08/09/2025
petition.parliament.uk/petitions/73... Please save lives by signing and reposting thank you.
petition.parliament.uk
Petition: Fund NHS COVID boosters for Clinically Vulnerable people – keep covid boosters
'Protect the NHS' and 'Save Lives' by continuing to fund NHS COVID boosters for Clinically Vulnerable people, including most previously shielded as CEV, rather than limiting them to over-75s, care hom...
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Clinically Vulnerable Families 💙💜💗 @cvcev.bsky.social · 27/08/2025
🚨 MILLIONS at higher risk will lose NHS Covid vaccines this autumn. Lives will be at risk. The NHS will face more pressure. Covid is as serious as 'flu and also requires updated seasonal vaccines. We can stop this! Sign + share our petition (on next post) 1/ #KeepCovidBoosters
Green petition background and government portcullis 

Sign our UK government petition

KEEP COVID BOOSTERS
for clinically vulnerable people

Images:
vaccine syringe, stick person, heart with cross in

SAVE LIVES

Clinically Vulnerable Families logo
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