#MEnotCFS
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pipsminitwee.bsky.social
I have been missing from life since 2000. So many #PwME are just existing, not living.
It is a much misunderstood, cruel, often mocked illness.
#MEawarenessDay #LearnFromME #BelieveME #MyalgicE #PwME #MillionsMissing
#StillTheSaME #WorldMEday #MEawarenessWeek #MEnotCFS
May 11, 2025 at 11:14 PM
pipsminitwee.bsky.social
I have been missing from life since 2000. So many #PwME are just existing, not living.
It is a much misunderstood, cruel, often mocked illness.
#MEawarenessDay #LearnFromME #BelieveME #MyalgicE #PwME #MillionsMissing
#StillTheSaME #WorldMEday #MEawarenessWeek #MEnotCFS
May 12, 2025 at 10:11 PM
pipsminitwee.bsky.social
Long COVID patients show brain swelling linked to memory and concentration problems, study finds - ABC News
#MyalgicE #LongCovid #MoreThanFatigue #MEnotCFS #PwME
www.abc.net.au/news/2025-02...
Long COVID patients show brain swelling linked to memory problems, study finds
Brain scans shows patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) share similar issues in a part of the brain known as the hippocampus.
www.abc.net.au
February 11, 2025 at 1:57 AM
pipsminitwee.bsky.social
Griffith University: Larger than normal hippocampus in Long Covid and ME/CFS patients #MyalgicE #LongCovid #MEnotCFS #PwME meassociation.org.uk/2025/02/grif...
Griffith University: Larger than normal hippocampus in Long Covid and ME/CFS patients - The ME Association
Griffith University reports on research findings that suggests ‘the MRI […]
meassociation.org.uk
February 15, 2025 at 1:53 PM
pipsminitwee.bsky.social
This week is #SevereMEawarenessWeek
Those with SME are hidden from view,often abandoned,left to struggle.
Severe ME can mean being trapped,you are housebound(like me) &/or bedbound,no escaping.
Yet, so many don’t even believe ME is real.
#SevereMEAwarenessWeek #SME2025
#PwME #MEnotCFS #MyalgicE
August 7, 2025 at 10:07 PM
pipsminitwee.bsky.social
Petition: Provide more funding for further biomedical research and education on CFS/ME
petition.parliament.uk/petitions/72...

#MEnotCFS #PwME #MEresearch #MyalgicE #MoreThanFatigue #BelieveME
Petition: Provide more funding for further biomedical research and education on CFS/ME
We want the government to provide more funding for further biomedical research and education on myalgic encephalomyelitis (ME)/chronic fatigue syndrome. ME Association UK estimates there are currently...
petition.parliament.uk
July 17, 2025 at 11:29 AM
pipsminitwee.bsky.social
People with ME have key genetic differences to other people, study finds #PwME #MEnotCFS #MEresearch #MyalgicE
@decodemestudy.bsky.social

uk.news.yahoo.com/people-key-g...
People with ME have key genetic differences to other people, study finds
The DecodeME study is described the largest of its kind in the world.
uk.news.yahoo.com
August 6, 2025 at 7:35 PM
pipsminitwee.bsky.social
Plan to help ME sufferers will not include extra funding 🙄🙄😡🤬😤
#MEnotCFS #MyalgicE #PwME
www.thetimes.com/uk/healthcar...
Plan to help ME sufferers will not include extra funding
Charities and MPs ‘incredibly disappointed’ at government’s decision, which they say will make it harder to support patients and find new treatments
www.thetimes.com
February 18, 2025 at 11:12 PM
pipsminitwee.bsky.social
The key genetic difference ME sufferers have from others – and what it means | The Independent

#PwME #MEnotCFS #MEresearch #MyalgicE

@decodemestudy.bsky.social

www.independent.co.uk/life-style/h...
The key genetic difference ME sufferers have from others – and what it means
Scientists said the findings offer the first robust evidence that genes contribute to a person’s chance of developing the disease
www.independent.co.uk
August 6, 2025 at 7:40 PM
pipsminitwee.bsky.social
Scientists find link between genes and ME/chronic fatigue syndrome | ME / Chronic fatigue syndrome | The Guardian

#PwME #MEnotCFS #MEresearch #MyalgicE

@decodemestudy.bsky.social

www.theguardian.com/society/2025...
Scientists find link between genes and ME/chronic fatigue syndrome
Large study suggests people’s genetics could ‘tip the balance’ on whether they would develop the illness
www.theguardian.com
August 6, 2025 at 7:52 PM
pipsminitwee.bsky.social
Petition · Save Savannah Victora-May - Prevent Another ME/CFS Tragedy - United Kingdom · Change.org
#SevereME #MEnotCFS #PwME #BelieveME #MyalgicE
www.change.org/p/save-savan...
Sign the Petition
Save Savannah Victora-May - Prevent Another ME/CFS Tragedy
www.change.org
July 23, 2025 at 11:03 AM
pipsminitwee.bsky.social
Key genetic differences found in people with chronic fatigue syndrome | New Scientist

#PwME #MEnotCFS #MEresearch #MyalgicE

@decodemestudy.bsky.social

www.newscientist.com/article/2491...
Key genetic differences found in people with chronic fatigue syndrome
People with chronic fatigue syndrome, also known as myalgic encephalomyelitis, appear to have eight genetic signals that differ from those without the condition
www.newscientist.com
August 6, 2025 at 9:06 PM
pipsminitwee.bsky.social
ME linked to your genetics – early study indicates – Channel 4 News

#PwME #MEnotCFS #MEresearch #MyalgicE

@decodemestudy.bsky.social

www.channel4.com/news/me-link...
ME linked to your genetics – early study indicates
Scientists said the findings offer the first robust evidence that genes contribute to a person’s chance of developing the disease.
www.channel4.com
August 6, 2025 at 7:37 PM
pipsminitwee.bsky.social
Today,May 12th, is International ME Awareness Day & Fibromyalgia Awareness Day. These are cruel,misunderstood,often mocked conditions💙💜
#MENotCFS #PwME #MEawarenessDay #StillTheSaME #MillionsMissing #FibroAwarenessDay

www.daysoftheyear.com/days/fibromy...

www.daysoftheyear.com/days/interna...
International ME/CFS Awareness Day
Imagine waking up feeling like you ran a marathon in your sleep. Your muscles ache, your mind feels foggy, and even small tasks drain every bit of energy.
www.daysoftheyear.com
May 12, 2025 at 12:13 PM
pipsminitwee.bsky.social
Sister of ME sufferer from Devon urges more government funding - BBC News
#PwME #MEnotCFS #BelieveME #MyalgicE
www.bbc.co.uk/news/article...
Sister of ME sufferer from Devon urges more government funding
Rosie Barrett, who cares for her sister Alice, says a plan to overhaul care needs financial backing.
www.bbc.co.uk
April 11, 2025 at 12:29 PM
pipsminitwee.bsky.social
The Times: Plan to help ME sufferers will not include extra funding - The ME Association
#MEnotCFS #MyalgicE #PwME
meassociation.org.uk/2025/02/the-...
The Times: Plan to help ME sufferers will not include extra funding - The ME Association
Charities and MPs ‘incredibly disappointed’ at government’s decision, which they […]
meassociation.org.uk
February 19, 2025 at 12:37 PM
pipsminitwee.bsky.social
People with ME have key genetic differences to other people, study finds

#SevereMEAwarenessWeek #SME2025
#PwME #MEnotCFS #MEresearch #MyalgicE

www.msn.com/en-gb/health...
MSN
www.msn.com
August 7, 2025 at 10:23 PM
pipsminitwee.bsky.social
Petition · The NHS must take measures to STOP Dill deteriorating ✍️ 🙏 -
#PwME #SevereME #MEawareness #SevereMEawarenessWeek #MyalgicE #MEnotCFS
Another person with ME being mistreated by the NHS, this is a shockingly sad situation, happening too often😡 www.change.org/p/the-nhs-mu...
Sign the Petition
The NHS must take measures to STOP Dill deteriorating
www.change.org
August 5, 2025 at 3:01 PM
pipsminitwee.bsky.social
Chronic fatigue is not in your head, it's in your blood - experts - BBC News ~ typical ME related stuff - they can’t agree on anything & just argue or say it’s not as it seems etc 🫩🖕 #PwME #MEnotCFS #MyalgicE www.bbc.co.uk/news/article...
Chronic fatigue is not in your head, it's in your blood - experts
The University of Edinburgh says its findings on ME/CFS could pave the way for a
www.bbc.co.uk
June 21, 2025 at 8:06 PM
pipsminitwee.bsky.social
Living with ME: Russell Fleming's journey from banker to ME advocate | thepost.uk.com
#MEnotCFS #MyalgicE #LongME #PwME #BelieveME
www.thepost.uk.com/news/health/...
One man's journey from banker to ME advocate
25 years ago, Russell Fleming’s life was changed instantly.
www.thepost.uk.com
April 4, 2025 at 4:21 PM
pipsminitwee.bsky.social
Initial DecodeME DNA Results - DecodeME #PwME #MEresearch #MyalgicE #MEnotCFS
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 7:16 PM
pipsminitwee.bsky.social
Government pledges to ‘transform care’ for people with ME - ITV News

apple.news/AK7aW38X-Rsu...
I’ll believe it when I see it! 😣
#MEnotCFS #PwME #MyalgicE #BelieveME 💙🕯️
Government pledges to ‘transform care’ for people with ME — ITV News
The Government has pledged to give hundreds of thousands of people living with chronic fatigue syndrome “improved care closer to home” as it acknowledged that many patients with the condition “struggl...
apple.news
July 22, 2025 at 12:49 AM
pipsminitwee.bsky.social
Maybe I’m being over sensitive etc but, is this article suggesting that because the lady felt she should/needed to move more(instead of ‘rotting’ in bed)she was able to?(however gradually). So again, are we being made to think we can, if we just try? #PwME #MEnotCFS
www.bbc.co.uk/news/article...
Shropshire woman who struggled to leave house eyes charity walk
Caroline Murphy is to undertake a 22-mile course after spending years of her life indoors due to illness.
www.bbc.co.uk
April 24, 2026 at 6:08 AM
pipsminitwee.bsky.social
Can science crack the mystery of ME? – podcast | ME / Chronic fatigue syndrome | The Guardian #MEnotCFS #MEResearch #PwME #MyalgicE www.theguardian.com/science/audi...
Can science crack the mystery of ME? – podcast
Madeleine Finlay speaks to science editor Ian Sample about a new study of how genes affect people’s chances of developing ME/CFS, and to Nicky Proctor who has ME and took part in the research. She als...
www.theguardian.com
August 21, 2025 at 9:41 PM
pipsminitwee.bsky.social
@meassociation.org.uk

#SevereMEAwarenessWeek #SME2025 #BelieveME
#PwME #MEnotCFS #MyalgicE
pipsminitwee.bsky.social Hannah @pipsminitwee.bsky.social · Aug 7
This week is #SevereMEawarenessWeek
Those with SME are hidden from view,often abandoned,left to struggle.
Severe ME can mean being trapped,you are housebound(like me) &/or bedbound,no escaping.
Yet, so many don’t even believe ME is real.
#SevereMEAwarenessWeek #SME2025
#PwME #MEnotCFS #MyalgicE
August 7, 2025 at 10:08 PM