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y0ur-neighb0ur.bsky.social
Y0ur-Neighb0ur
@y0ur-neighb0ur.bsky.social
19 followers 43 following 7 posts
Very severe #MyalgicEncephalomyelitis in #LongTermCare w/ #Gtube. #MGUS.
Dad, 🏍 enthusiast, former hobby 🚜 and tradesman 🔧
Future GRAMPA!
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y0ur-neighb0ur.bsky.social
Y0ur-Neighb0ur @y0ur-neighb0ur.bsky.social · Aug 18
From riding enduro with my son in 2018 to being bedbound with very severe #MECFS in 2025 - 7 years in, I’ve lost everything.

#MillionsMissing #NEISvoid
#MyalgicEncephalomyelitis
#severeME #pwME
y0ur-neighb0ur.bsky.social
From riding enduro with my son in 2018 to being bedbound with very severe #MECFS in 2025 - 7 years in, I’ve lost everything.

#MillionsMissing #NEISvoid
#MyalgicEncephalomyelitis
#severeME #pwME
August 18, 2025 at 9:47 PM
Reposted by Y0ur-Neighb0ur
jackamatica.bsky.social
3 Biological Neuroimmune Subtypes in Post-COVID & ME/CFS 🔬❕

We mapped our @amaticahealth post-COVID + ME patients into three distinct biological clusters using Neuroimmune markers

Cluster 1; mitochondrial stress
Cluster 2; Non inflammatory
Cluster 3; Neuro inflammatory

🧵 👇🏻
June 24, 2025 at 3:28 PM
Reposted by Y0ur-Neighb0ur
exceedhergrasp1.bsky.social
Everyone needs to read this

This is extremely bad
propublica.org ProPublica @propublica.org · Aug 12
NEW: In June, ProPublica reported that the FDA has given more than 20 foreign factories a special pass to send drugs to the U.S. even though they were made at plants the agency had banned.

Today, we’re publishing a list of those exempted drugs.
The FDA Let Substandard Factories Ship These Medications to the U.S.
ProPublica identified more than 150 products that were exempted from import bans since 2013. Our list provides the names of the drugs or ingredients and their manufacturers, many of which are no longe...
www.propublica.org
August 12, 2025 at 2:33 PM
Reposted by Y0ur-Neighb0ur
exceedhergrasp1.bsky.social
Huge congrats to Chris Ponting and the whole Decode ME team on their preprint on #genetics of people with #MECFS!

Pre-print plus li'l video before we get into a deeper dive.

Vid: www.youtube.com/watch?v=0S5u...

Preprint: www.pure.ed.ac.uk/ws/portalfil... 🧪 🧵
www.pure.ed.ac.uk
August 7, 2025 at 3:15 PM
Reposted by Y0ur-Neighb0ur
bhanlon15.bsky.social
The Times: 'Lack of ME research because of ‘medical misogyny’, says top scientist'

'Professor Chris Ponting, who led a groundbreaking study into the disease, says it is ‘highly stigmatised and incredibly female-biased’'

#DecodeME

www.thetimes.com/uk/scotland/...
Lack of ME research because of ‘medical misogyny’, says top scientist
Professor Chris Ponting, who led a groundbreaking study into the disease, says it is ‘highly stigmatised and incredibly female-biased’
www.thetimes.com
August 7, 2025 at 7:49 PM
Reposted by Y0ur-Neighb0ur
tomkindlon.bsky.social
New blog post from DecodeME team explaining new findings and discussing them in a bit more detail:

"X marks the spot where ME/CFS biology can be discovered"

www.decodeme.org.uk/x-marks-the-...

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
DecodeME logo Home > X marks the spot where ME/CFS biology can be discovered X marks the spot where ME/CFS biology can be discovered 06 August 2025 Scientists, people with ME/CFS, and their charities came together to create DecodeME, the world's biggest ME/CFS study – and its results are striking. 18,000 people with ME/CFS gave their DNA, enabling DecodeME to reveal eightgenetic signals for the illness. These signals indicate that immune and neurological processes play a significant role in ME/CFS.
August 7, 2025 at 12:44 AM
Reposted by Y0ur-Neighb0ur
tomkindlon.bsky.social
The #DecodeME study only looked at a subset of the total DNA. The same research team would like to deeper with a study called #SequenceME but unfortunately need significant funds to do this. Fingers crossed it happens. 🤞 #MEcfs #CFS #PwME
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · Dec 23
SequenceME: first of a kind genetic study

www.actionforme.org.uk/news/sequenc...

Image is from Science for ME weekly update

#MEcfs #CFS #pwme
UK SequenceME: first of a kind genetic study "SequenceME will bring together experts from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME, to uncover the root causes of ME ... The project builds on the DecodeME study, the world’s largest genetic study of ME led by the University of Edinburgh and Action for ME, which investigated whether common genetic variants were more likely to appear in those with ME than those without the condition. Over 17,000 participants who donated saliva samples to DecodeME have consented to further analysis and he SequenceME partners will seek to analyse them all." The project team are seeking £7 million to analyse the first 10,000 samples.
August 6, 2025 at 7:52 PM
y0ur-neighb0ur.bsky.social
@exceedhergrasp1.bsky.social I was wondering if you'd consider trying to reach out to @billgates.bsky.social & the Gates Foundation to convey the med neglect people w/ #MyalgicEncephalomyelitis face. A clear, evidence-based appeal could drive vital research funding.

www.nbcnews.com/health/women...
Gates Foundation commits $2.5 billion to 'ignored' women's health
The investment is among its first big commitments since Gates announced this year that he would give away his $200 billion fortune by 2045.
www.nbcnews.com
August 6, 2025 at 2:01 AM