Beth F W
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omfcharitymugs.bsky.social
Beth F W
@omfcharitymugs.bsky.social
190 followers 790 following 34 posts
Severe ME/CFS patient since 2006, fundraising for the Open Medicine Foundation, all proceeds from all sales go directly to OMF, Worldwide shipping🩵

https://omfcharitymugs.teemill.com
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omfcharitymugs.bsky.social
Beth F W @omfcharitymugs.bsky.social · Nov 17
A brief introduction for anyone who hasn't seen on other social media, mainly post on Instagram (when I can)
Reposted by Beth F W
katybrc.bsky.social
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
December 2, 2025 at 4:11 PM
Reposted by Beth F W
scienceforme.bsky.social
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...
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.
www.s4me.info
October 5, 2025 at 11:07 PM
Reposted by Beth F W
abrokenbattery.bsky.social
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?...
Natasha Devon - Long-term sickness call in
YouTube video by Broken Battery
youtu.be
October 5, 2025 at 8:32 AM
Reposted by Beth F W
nikosuvisto.com
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.
September 20, 2025 at 4:26 PM
Reposted by Beth F W
openmedf.bsky.social
This is the first strong evidence of a genetic contribution to #PEM in #MECFS.

Full publication: translational-medicine.biomedcentral.com/articles/10....
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...
translational-medicine.biomedcentral.com
September 16, 2025 at 4:46 PM
Reposted by Beth F W
openmedf.bsky.social
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)
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.
www.omf.ngo
September 16, 2025 at 4:45 PM
Reposted by Beth F W
swastrosarah.bsky.social
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
swastrosarah.bsky.social sarah boothby @swastrosarah.bsky.social · Sep 9
#Savannah #vsME update. A good MDT which ran over to twice the length of time allocated. Dr Weir and I were both invited, spoke at length and were heard. The absence of NHS ME specialists _anywhere_ in the UK is the biggest probem for every ICB, including Lewisham and Greenwich.
September 13, 2025 at 6:20 PM
Reposted by Beth F W
speckle48.bsky.social
petition.parliament.uk/petitions/73...

Please save lives by signing and reposting thank you.
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...
petition.parliament.uk
September 8, 2025 at 6:27 AM
Reposted by Beth F W
cvcev.bsky.social
🚨 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
August 27, 2025 at 4:23 PM
Reposted by Beth F W
openmedf.bsky.social
From our friends at @meactnet.bsky.social:

📢 Help Us Save Telehealth
meactnet.bsky.social #MEAction Network @meactnet.bsky.social · Aug 26
Essential telehealth provisions are set to expire on September 30th 2025. Congress needs to hear from all of us that telehealth saves lives.

Sample script and call instructions: www.meactions.org/telehealth

#pwME #telehealth #disability #MyalgicE #LongCovid #congress #MECFS
blue square image with a white frame. On the left side is a white hand holding a red phone with a cord wrapped around the wrist. MEAction logo at top right. Text in white font: help us save telehealth! Make a call or send an email
August 27, 2025 at 12:54 PM
Reposted by Beth F W
openmedf.bsky.social
ICYMI: OMF's research centers in Uppsala and Melbourne published a study of steroid hormones. The study identified changes in steroid-steroid relationships that indicate there is a dysfunction in HPA axis function and progestogen pathways.

👉 ow.ly/Hh1z50WvrLb
On the left is a photo of Dr. Jonas Bergquist. On the right is a photo of Dr. Chris Armstrong, smiling and dressed in a blue shirt. Text below the images reads: “New publication: Steroid Dynamics in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Case-Control Study using Ultra Performance Supercritical Fluid Chromatography Tandem Mass Spectrometry.”
August 25, 2025 at 2:45 PM
Reposted by Beth F W
openmedf.bsky.social
Please join the Community Symposium on the Molecular Basis of ME/CFS with opening remarks by Ronald W. Davis, PhD, Stanford University, followed by a welcome from Linda Tannenbaum, OMF CEO.

🗓️ September 5, 2025
⏲️ 8:00 am – 2:30 pm PST

👉 Register here: ow.ly/9zRg50WIbO3.
Community Symposium on the Molecular Basis of ME/CFS Agenda
August 22, 2025 at 3:27 PM
Reposted by Beth F W
openmedf.bsky.social
From Ronald W. Davis, PhD: Community Symposium on the Molecular Basis of ME/CFS returns!

👉 Register for the Community Symposium: ow.ly/vm1S50WIbO2.

#pwME #MECFS
I am pleased to announce that this year’s 9th Annual Stanford Working Group Meeting on the Molecular Basis of ME/CFS will include a Community Symposium again, in which patients, caregivers, doctors, and any other interested parties are invited to attend. The meeting will be held September 2 - 5, and the last day, September 5, will be open to the public. It will be held on zoom from 8 am to 1 pm PST, and you must register to be sent a link to gain entrance to the meeting.
August 19, 2025 at 4:05 PM
Reposted by Beth F W
nelehelena.bsky.social
A Dutch #pwME urgently needs TPN (Total Parenteral Nutrition) because she has gastroparesis and cannot tolerate food or any other form of tube feeding. But the hospital refuses, saying they don’t provide this to pw ME.

Is there anyone in the international community who can help?
August 19, 2025 at 8:07 AM
Reposted by Beth F W
swastrosarah.bsky.social
no paywall full story full story archive.is/2025.08.09-2...
August 10, 2025 at 12:58 PM
Reposted by Beth F W
decodemestudy.bsky.social
The Management Team are delighted to announce DecodeME’s initial DNA results & discuss what this means for #pwME & future research.

A huge thanks to all our participants for giving their time, energy & DNA to the project.

Learn more about our findings: shorturl.at/XOVJ1
August 7, 2025 at 9:20 AM
Reposted by Beth F W
decodemestudy.bsky.social
Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population.
-
Summary of our results: shorturl.at/pgsjk
Check out our full preprint paper: shorturl.at/VwN3s
DecodeME: The Results announcement post. The graphic has a blue background with a DNA helix. In the centre of the graphic it says ‘We have released our initial DNA results! We have discovered that your genes contribute to your chances of developing ME/CFS.’ At the bottom left of the graphic is an image of a research paper.
August 6, 2025 at 6:24 PM
Reposted by Beth F W
decodemestudy.bsky.social
(1/2) Key genetic differences found in people with ME/CFS > Swipe to find out more.

These findings reflect the lived experience of thousands of #pwME.

Thanks to all our participants & supporters who made this possible!

Read a summary of our results: shorturl.at/pgsjk
Graphic 1 of 4. DecodeME: The Results graphic. At the top in bold lettering, it says ‘Main Findings’. Beneath this it says ‘Your genes contribute to your chances of developing ME/CFS. Other key findings are on the following slides. Graphic 2 of 4. DecodeME: The Results graphic. The slide says ‘People with an ME/CFS diagnosis have significant genetic differences in their DNA compared to the general population’. Beneath this is an image of a DNA helix and a magnifying glass. Graphic 3 of 4. DecodeME: The Results graphic. The slide says ‘These lie in many places across the genome, and do not impact just one gene’. Beneath this is an image of a DNA helix and graphs. Graphic 4 of 4. DecodeME: The Results graphic. The slide says ‘Eight genetic signals have been identified. As DNA doesn’t change with ME/CFS onset, these findings reflect causes rather than effects of ME/CFS’. Beneath this is a blue magnifying glass with a DNA helix.
August 6, 2025 at 7:03 PM
Reposted by Beth F W
binitakane.bsky.social
DECODE ME has published its results.

Massive congratulations to @cgatist.bsky.social and team in Edinburgh.

Let’s hope this is the start of a paradigm shift in how we view, research and treat this dreadful illness.

www.decodeme.org.uk/initial-dna-...
Initial DecodeME DNA Results - DecodeME
06 August 2025 The DecodeME team is delighted to announce that the initial analysis of 15,579 DNA samples is complete, and we have important news to share. Main findings from our analysis  Your genes ...
www.decodeme.org.uk
August 6, 2025 at 6:50 PM
Reposted by Beth F W
decodemestudy.bsky.social
The initial DNA results from DecodeME are coming this week! We will release them on our website on Wednesday 6th August at 7pm (approx).

We're letting you know the timing in advance so you can pace beforehand.

Thank you to our participants & supporters.
Dark blue background with image of DNA helix. At the top of the DecodeME ‘the results’ logo. Two spotlights shine on a speech bubble that says ‘Initial DNA results’. To the right of this is an image of a research paper. At the bottom of the graphic it says ‘Wednesday 7pm BST’.
August 4, 2025 at 5:23 PM
Reposted by Beth F W
d2p.bsky.social
On the outdated, flawed and harmful 'current' review on exercise in #MECFS. From one of Cochrane's founder members:

"Given the Cochrane Collaboration’s reliance on their exceptional status and members, that is untenable. Not retiring influential out-of-date reviews is a ticking time bomb."
August 1, 2025 at 2:56 AM
Reposted by Beth F W
unrealarthur.bsky.social
Update from Isla’s mother @swiftsandswallows.bsky.social , “We are very grateful for the overwhelming support from the ME community, it honestly means such a lot. For now though we need time to digest what's happened, to regroup and to catch up on sleep.”
Swiftsandswallows Isla’s mother post on Twitter, “We are very grateful for the overwhelming support from the ME community, it honestly means such a lot. For now though we need time to digest what's happened, to regroup and to catch up on sleep.”
August 1, 2025 at 4:57 AM
Reposted by Beth F W
murtoz.bsky.social
www.change.org/p/save-savan...

www.change.org/p/the-nhs-mu...

www.change.org/p/save-karen...
Sign the Petition
Save Savannah Victora-May - Prevent Another ME/CFS Tragedy
www.change.org
July 31, 2025 at 1:40 PM
Reposted by Beth F W
murtoz.bsky.social
Within a week of the plan being published, There were three petitions for people with severe ME being held against their will by the NHS. And now this mother of a child with ME being *arrested* for her death despite the harms caused by THE NHS!!!
July 31, 2025 at 1:38 PM