#pwme — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #pwme, aggregated by home.social.
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What cognitive dysfunction (brain fog) in ME/CFS feels like#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME
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Check out the latest News in Brief (Aug. 31 - Sept. 6) from the Science for ME forum, a weekly summary of ME/CFS & Long Covid news including research, advocacy, and coming events.
https://s4me.info/threads/news-in-brief-september-2026.52320/#post-719398
Public posts on the forum can be read by anyone, but if you'd like to join the discussion then you'll need to become a forum member. It's free 😁
https://
s4me.info/threads/welcome.38181/ -
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Impact of cognitive dysfunction in ME/CFS from ME Research UKCareers are impacted, cherished hobbies become exhausting, and relationships grow strained.
https://www.meresearch.org.uk/the-experience-and-impact-of-cognitive-dysfunction-in-me-cfs/
#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME @mecfs -
The union news site Arbetsvärlden in Sweden writes about the hardship patients with ME face when assessed for being fit to work
Google translation links
https://translate.google.com/translate?sl=se&tl=en&u=https://www.arbetsvarlden.se/efter-sex-ar-med-sjukpenning-drogs-allt-in-mitt-batteri-ar-standigt-pa-10-procent/Screenshot from latest Science for ME weekly update
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What cognitive dysfunction (brain fog) in ME/CFS feels like#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME
@mecfs -
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Impact of cognitive dysfunction in ME/CFS from ME Research UKCareers are impacted, cherished hobbies become exhausting, and relationships grow strained.
https://www.meresearch.org.uk/the-experience-and-impact-of-cognitive-dysfunction-in-me-cfs/
#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME -
ME/CFS Tube Feeding Survey Report by the British Association of Clinicians in ME/CFS
Screenshot from latest Science for ME weekly update
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What cognitive dysfunction (brain fog) in ME/CFS feels like#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME -
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Impact of cognitive dysfunction in ME/CFS from ME Research UKCareers are impacted, cherished hobbies become exhausting, and relationships grow strained.
https://www.meresearch.org.uk/the-experience-and-impact-of-cognitive-dysfunction-in-me-cfs/
#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME
@mecfs -
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What cognitive dysfunction (brain fog) in ME/CFS feels like#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME -
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Impact of cognitive dysfunction in ME/CFS from ME Research UKCareers are impacted, cherished hobbies become exhausting, and relationships grow strained.
https://www.meresearch.org.uk/the-experience-and-impact-of-cognitive-dysfunction-in-me-cfs/
#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME -
A German petition states people with ME/CFS should not be obliged to undergo rehabilitation against their will.Refusal or non-participation in rehabilitation must not lead to disadvantages under social law. It has been signed more than 3000 times & has a 30000-signature target
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“No person with a serious disability should have to fight the very systems that are supposed to provide care and protection.”#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@mecfs -
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Impact of cognitive dysfunction in ME/CFS from ME Research UKCareers are impacted, cherished hobbies become exhausting, and relationships grow strained.
https://www.meresearch.org.uk/the-experience-and-impact-of-cognitive-dysfunction-in-me-cfs/
#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME -
Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of Aug. 31 - Sept. 6.
https://s4me.info/threads/news-in-brief-september-2026.52320/#post-719398
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Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of Aug. 31 - Sept. 6.
https://s4me.info/threads/news-in-brief-september-2026.52320/#post-719398
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Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of Aug. 31 - Sept. 6.
https://s4me.info/threads/news-in-brief-september-2026.52320/#post-719398
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Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of Aug. 31 - Sept. 6.
https://s4me.info/threads/news-in-brief-september-2026.52320/#post-719398
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Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of Aug. 31 - Sept. 6.
https://s4me.info/threads/news-in-brief-september-2026.52320/#post-719398
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“In countries with fewer resources, the problem may be limited access to care. But even in countries with well-developed healthcare and social systems, many people with ME continue to experience harm because outdated beliefs, lack of training and poor implementation of current knowledge persist. Resources alone are not enough if the system does not recognise the disease and protect the patient.”#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
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“rest is rarely respected as the critical & often sole medical intervention it is. For this reason, even those who mean us no harm may actively encourage us to push through dangerous symptoms, believing our mindset to be, at least in part, playing a role.”
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“rest is rarely respected as the critical & often sole medical intervention it is. For this reason, even those who mean us no harm may actively encourage us to push through dangerous symptoms, believing our mindset to be, at least in part, playing a role.”
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3/
“rest is rarely respected as the critical & often sole medical intervention it is. For this reason, even those who mean us no harm may actively encourage us to push through dangerous symptoms, believing our mindset to be, at least in part, playing a role.”
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3/
“rest is rarely respected as the critical & often sole medical intervention it is. For this reason, even those who mean us no harm may actively encourage us to push through dangerous symptoms, believing our mindset to be, at least in part, playing a role.”
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3/
“rest is rarely respected as the critical & often sole medical intervention it is. For this reason, even those who mean us no harm may actively encourage us to push through dangerous symptoms, believing our mindset to be, at least in part, playing a role.”
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Headings (contd):
4. The Brick Wall of Welfare
5. The Social Toll - Relentless Interrogation
6. Worn Out Carers
7. The Gagged Target of Vitriol
8. Conclusion -
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Headings (contd):
4. The Brick Wall of Welfare
5. The Social Toll - Relentless Interrogation
6. Worn Out Carers
7. The Gagged Target of Vitriol
8. Conclusion -
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Headings (contd):
4. The Brick Wall of Welfare
5. The Social Toll - Relentless Interrogation
6. Worn Out Carers
7. The Gagged Target of Vitriol
8. Conclusion -
2/
Headings (contd):
4. The Brick Wall of Welfare
5. The Social Toll - Relentless Interrogation
6. Worn Out Carers
7. The Gagged Target of Vitriol
8. Conclusion -
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Headings (contd):
4. The Brick Wall of Welfare
5. The Social Toll - Relentless Interrogation
6. Worn Out Carers
7. The Gagged Target of Vitriol
8. Conclusion -
🧵
Impact of cognitive dysfunction in ME/CFS from ME Research UKCareers are impacted, cherished hobbies become exhausting, and relationships grow strained.
https://www.meresearch.org.uk/the-experience-and-impact-of-cognitive-dysfunction-in-me-cfs/
#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME @mecfs
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“Research is essential, and we need investment in it. But recognition, education, appropriate accommodations and respectful treatment are measures that can be implemented now. They can prevent additional suffering while science continues to advance.”
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Focuses on ME and other related conditions (dysautonomia, MCAS & long COVID)
https://pollypauthor.substack.com/p/the-hidden-burdens-of-unacceptable
Author is in the UK and discusses the situation in the UK but many people in other countries will be able to resonate with what is discussed
Headings:
1. The Diagnostic Battle
2. “It’s A Trap!” - Diagnoses of Exclusion
3. Unpaid NHS Admin Duties(Continues)
@mecfs @longcovid #mecfs #pwme #MyalgicEncephalomyelitis #longcovid #cfs
#mcas1/
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Focuses on ME and other related conditions (dysautonomia, MCAS & long COVID)
https://pollypauthor.substack.com/p/the-hidden-burdens-of-unacceptable
Author is in the UK and discusses the situation in the UK but many people in other countries will be able to resonate with what is discussed
Headings:
1. The Diagnostic Battle
2. “It’s A Trap!” - Diagnoses of Exclusion
3. Unpaid NHS Admin Duties(Continues)
@mecfs @longcovid #mecfs #pwme #MyalgicEncephalomyelitis #longcovid #cfs
#mcas1/
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Focuses on ME and other related conditions (dysautonomia, MCAS & long COVID)
https://pollypauthor.substack.com/p/the-hidden-burdens-of-unacceptable
Author is in the UK and discusses the situation in the UK but many people in other countries will be able to resonate with what is discussed
Headings:
1. The Diagnostic Battle
2. “It’s A Trap!” - Diagnoses of Exclusion
3. Unpaid NHS Admin Duties(Continues)
@mecfs @longcovid #mecfs #pwme #MyalgicEncephalomyelitis #longcovid #cfs
#mcas1/
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Focuses on ME and other related conditions (dysautonomia, MCAS & long COVID)
https://pollypauthor.substack.com/p/the-hidden-burdens-of-unacceptable
Author is in the UK and discusses the situation in the UK but many people in other countries will be able to resonate with what is discussed
Headings:
1. The Diagnostic Battle
2. “It’s A Trap!” - Diagnoses of Exclusion
3. Unpaid NHS Admin Duties(Continues)
@mecfs @longcovid #mecfs #pwme #MyalgicEncephalomyelitis #longcovid #cfs
#mcas1/
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Focuses on ME and other related conditions (dysautonomia, MCAS & long COVID)
https://pollypauthor.substack.com/p/the-hidden-burdens-of-unacceptable
Author is in the UK and discusses the situation in the UK but many people in other countries will be able to resonate with what is discussed
Headings:
1. The Diagnostic Battle
2. “It’s A Trap!” - Diagnoses of Exclusion
3. Unpaid NHS Admin Duties(Continues)
@mecfs @longcovid #mecfs #pwme #MyalgicEncephalomyelitis #longcovid #cfs
#mcas1/
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ME Research UKWe are deeply appreciative that the community has shared their experiences with us. Those detailing the devastation of cognitive dysfunction in ME/CFS are both moving and profoundly informative.
https://www.meresearch.org.uk/the-experience-and-impact-of-cognitive-dysfunction-in-me-cfs/
#MEcfs #PwME #CFS #BrainFog @mecfs
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ME Research UK:
ME Research UK's August e-newsletter was sent to inboxes throughout the world earlier today.
Not on our list?
Sign up - https://tinyurl.com/5n94u488 or read online - https://tinyurl.com/4n4rnpmu -
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“And this leads to the third harm: the physical damage caused by the system’s response to the illness.” -
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“But the second harm comes from disbelief and invalidation. Instead of receiving understanding and support, many of us encounter questioning, doubt and dismissal. This is not only something that happened in the past. It continues today. My symptoms are still questioned, my limitations are still doubted, and I still have to justify that I am genuinely ill.” -
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“The first harm is the disease itself: the biological damage caused by a serious, disabling illness. This is the harm that research is trying to address. We urgently need better diagnosis, effective treatments and, ultimately, a cure.” -
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“Listening also means paying attention to the environment. Light, sound, touch, temperature, conversation, upright positioning, movement, even other people being in or near the room – all of it can be a physiologic stressor. The environment itself can determine whether a healthcare visit is accessible or harmful.”
#severeme #mecfs #pwme #cfs
@mecfs -
6/
“Listening also means paying attention to the environment. Light, sound, touch, temperature, conversation, upright positioning, movement, even other people being in or near the room – all of it can be a physiologic stressor. The environment itself can determine whether a healthcare visit is accessible or harmful.”
#severeme #mecfs #pwme #cfs
@mecfs -
6/
“Listening also means paying attention to the environment. Light, sound, touch, temperature, conversation, upright positioning, movement, even other people being in or near the room – all of it can be a physiologic stressor. The environment itself can determine whether a healthcare visit is accessible or harmful.”
#severeme #mecfs #pwme #cfs
@mecfs -
6/
“Listening also means paying attention to the environment. Light, sound, touch, temperature, conversation, upright positioning, movement, even other people being in or near the room – all of it can be a physiologic stressor. The environment itself can determine whether a healthcare visit is accessible or harmful.”
#severeme #mecfs #pwme #cfs
@mecfs -
6/
“Listening also means paying attention to the environment. Light, sound, touch, temperature, conversation, upright positioning, movement, even other people being in or near the room – all of it can be a physiologic stressor. The environment itself can determine whether a healthcare visit is accessible or harmful.”
#severeme #mecfs #pwme #cfs
@mecfs -
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“Documentation is part of that advocacy: clearly recording functional limitations, symptom exacerbation, environmental barriers, and necessary supports can make the difference in whether a patient can receive equipment, home-based services, disability benefits, or appropriate care.” -
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“Living with ME has moved them from being defined by what they do toward being, in their words, more of a human being than a human doing” -
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“Living with ME has moved them from being defined by what they do toward being, in their words, more of a human being than a human doing”