For people with severe #ME, even speaking can risk post-exertional mailaise, and they often need carers to speak for them.
#SevereMEWeek
#SevereMEWeek
August 6, 2025 at 10:13 AM
For people with severe #ME, even speaking can risk post-exertional mailaise, and they often need carers to speak for them.
#SevereMEWeek
#SevereMEWeek
#SevereME can result in the loss of two incomes in a household: that of the patient and that of the carer.
#SevereMEWeek
#SevereMEWeek
August 5, 2025 at 8:33 AM
#SevereME can result in the loss of two incomes in a household: that of the patient and that of the carer.
#SevereMEWeek
#SevereMEWeek
Merryn had Very Severe ME for 6 years. She was totally bedbound, tube fed intravenously (TPN) due to gastro intestinal failure, unable to bear light, noise, touch or movement She suffered with horrific pain but never lost her big beautiful smile.
Merryn died just 10 days after her 21st birthday.
Merryn died just 10 days after her 21st birthday.
August 5, 2025 at 9:10 PM
#SevereMEweek
Was ich in den vergangenen Tagen bzgl. MECFS lesen musste, geht weit über Geschmacklosigkeit hinaus.
Ärzt*innen posteten Folgendes:
"Aggressives, unangenehmes Pack, ihr habt eure Erkrankung doch verdient. Kennt man einen, kennt man alle...
Was ich in den vergangenen Tagen bzgl. MECFS lesen musste, geht weit über Geschmacklosigkeit hinaus.
Ärzt*innen posteten Folgendes:
"Aggressives, unangenehmes Pack, ihr habt eure Erkrankung doch verdient. Kennt man einen, kennt man alle...
August 6, 2026 at 8:55 AM
#SevereMEweek
Was ich in den vergangenen Tagen bzgl. MECFS lesen musste, geht weit über Geschmacklosigkeit hinaus.
Ärzt*innen posteten Folgendes:
"Aggressives, unangenehmes Pack, ihr habt eure Erkrankung doch verdient. Kennt man einen, kennt man alle...
Was ich in den vergangenen Tagen bzgl. MECFS lesen musste, geht weit über Geschmacklosigkeit hinaus.
Ärzt*innen posteten Folgendes:
"Aggressives, unangenehmes Pack, ihr habt eure Erkrankung doch verdient. Kennt man einen, kennt man alle...
In severe #ME, everyday activities such as washing, eating, and talking can cause post-exertional malaise (PEM) which can cause flare ups or relapses.
#SevereMEWeek
#SevereMEWeek
August 5, 2025 at 3:38 PM
In severe #ME, everyday activities such as washing, eating, and talking can cause post-exertional malaise (PEM) which can cause flare ups or relapses.
#SevereMEWeek
#SevereMEWeek
Apparently it’s #SevereMEWeek
Rather than producing loads of content showing how ill we are, yet again, maybe this year the ME orgs could call out those responsible for our continued dismissal, gaslighting, and abuse. By name preferably. Maybe we could all do the same?
Rather than producing loads of content showing how ill we are, yet again, maybe this year the ME orgs could call out those responsible for our continued dismissal, gaslighting, and abuse. By name preferably. Maybe we could all do the same?
August 3, 2026 at 1:36 PM
Apparently it’s #SevereMEWeek
Rather than producing loads of content showing how ill we are, yet again, maybe this year the ME orgs could call out those responsible for our continued dismissal, gaslighting, and abuse. By name preferably. Maybe we could all do the same?
Rather than producing loads of content showing how ill we are, yet again, maybe this year the ME orgs could call out those responsible for our continued dismissal, gaslighting, and abuse. By name preferably. Maybe we could all do the same?
#SevereMEweek
@yvettecooper-mp.bsky.social @andyburnham.bsky.social please educate yourselves on Severe M.E.
Hundreds of thousands of people of working age have been left barely getting by because of this horrific disease.
You can change that, by funding research, by finalising the delivery plan.
@yvettecooper-mp.bsky.social @andyburnham.bsky.social please educate yourselves on Severe M.E.
Hundreds of thousands of people of working age have been left barely getting by because of this horrific disease.
You can change that, by funding research, by finalising the delivery plan.
August 4, 2026 at 10:31 PM
#SevereMEweek
@yvettecooper-mp.bsky.social @andyburnham.bsky.social please educate yourselves on Severe M.E.
Hundreds of thousands of people of working age have been left barely getting by because of this horrific disease.
You can change that, by funding research, by finalising the delivery plan.
@yvettecooper-mp.bsky.social @andyburnham.bsky.social please educate yourselves on Severe M.E.
Hundreds of thousands of people of working age have been left barely getting by because of this horrific disease.
You can change that, by funding research, by finalising the delivery plan.
Sensory stimuli can cause a flare up or relapse in people with #severeME, so they require a low sensory environment—minimal light, noise, touch, movement, chemicals, and odours.
#SevereMEWeek
www.mdpi.com/2227-9032/9/...
#SevereMEWeek
www.mdpi.com/2227-9032/9/...
www.mdpi.com
August 6, 2025 at 7:30 AM
Sensory stimuli can cause a flare up or relapse in people with #severeME, so they require a low sensory environment—minimal light, noise, touch, movement, chemicals, and odours.
#SevereMEWeek
www.mdpi.com/2227-9032/9/...
#SevereMEWeek
www.mdpi.com/2227-9032/9/...
Some people with severe #ME need to be fed because they are unable to prepare meals, hold cutlery, or cut up food.
#SevereMEWeek
#EndMalnutritionInME
@bapen.bsky.social @mnpathway.bsky.social
#SevereMEWeek
#EndMalnutritionInME
@bapen.bsky.social @mnpathway.bsky.social
August 7, 2025 at 11:59 AM
Some people with severe #ME need to be fed because they are unable to prepare meals, hold cutlery, or cut up food.
#SevereMEWeek
#EndMalnutritionInME
@bapen.bsky.social @mnpathway.bsky.social
#SevereMEWeek
#EndMalnutritionInME
@bapen.bsky.social @mnpathway.bsky.social
August 4, 2026 at 9:20 PM
To reduce the risk of a flare up or relapse, people with #ME need to be able to set parameters around when, where, and for how long they interact with other people, including health and social care professionals.
#SevereMEWeek
www.mdpi.com/2227-9032/8/...
#SevereMEWeek
www.mdpi.com/2227-9032/8/...
www.mdpi.com
August 6, 2025 at 1:37 PM
To reduce the risk of a flare up or relapse, people with #ME need to be able to set parameters around when, where, and for how long they interact with other people, including health and social care professionals.
#SevereMEWeek
www.mdpi.com/2227-9032/8/...
#SevereMEWeek
www.mdpi.com/2227-9032/8/...
GP again begged my family/abusers to mask bc #Covid is slowing killing me & they still refused.
Help me escape these arseholes.
I can’t return so I need enough $ to be stable.
DSP not much.
#MutualAid #FDV #SevereMEWeek #SevereMEDay
#SevereME
@meactnet.bsky.social
chuffed.org/project/1619...
Help me escape these arseholes.
I can’t return so I need enough $ to be stable.
DSP not much.
#MutualAid #FDV #SevereMEWeek #SevereMEDay
#SevereME
@meactnet.bsky.social
chuffed.org/project/1619...
### Urgent Appeal: Help Anna Escape Abuse – Time is Running Out!
🚨EMERGENCY: Anna's Life Hangs in the Balance – Act NOW to Rescue Her from Abuse and Neglect!
chuffed.org
August 7, 2026 at 11:59 PM
GP again begged my family/abusers to mask bc #Covid is slowing killing me & they still refused.
Help me escape these arseholes.
I can’t return so I need enough $ to be stable.
DSP not much.
#MutualAid #FDV #SevereMEWeek #SevereMEDay
#SevereME
@meactnet.bsky.social
chuffed.org/project/1619...
Help me escape these arseholes.
I can’t return so I need enough $ to be stable.
DSP not much.
#MutualAid #FDV #SevereMEWeek #SevereMEDay
#SevereME
@meactnet.bsky.social
chuffed.org/project/1619...
People with severe #ME may need food to be pureed or in small pieces to avoid the need for chewing. Some may eat little and often, up to six meals a day. Others may only be able to eat one or two meals per day.
#SevereMEWeek
#EndMalnutritionInME
#SevereMEWeek
#EndMalnutritionInME
August 7, 2025 at 6:26 PM
People with severe #ME may need food to be pureed or in small pieces to avoid the need for chewing. Some may eat little and often, up to six meals a day. Others may only be able to eat one or two meals per day.
#SevereMEWeek
#EndMalnutritionInME
#SevereMEWeek
#EndMalnutritionInME
During Severe ME Week 2026 (3–9 Aug), we're sharing artwork, poems & stories from people with Severe or Very Severe ME to raise awareness.
Submit yours here: https://meassociation.org.uk/about-the-mea/campaigns/severe-me-week/
#SevereME #MECFS #SevereMEWeek
Submit yours here: https://meassociation.org.uk/about-the-mea/campaigns/severe-me-week/
#SevereME #MECFS #SevereMEWeek
June 29, 2026 at 12:42 PM
During Severe ME Week 2026 (3–9 Aug), we're sharing artwork, poems & stories from people with Severe or Very Severe ME to raise awareness.
Submit yours here: https://meassociation.org.uk/about-the-mea/campaigns/severe-me-week/
#SevereME #MECFS #SevereMEWeek
Submit yours here: https://meassociation.org.uk/about-the-mea/campaigns/severe-me-week/
#SevereME #MECFS #SevereMEWeek
During Severe ME Week 2026 (3–9 Aug), we're sharing artwork, poems and stories by people with Severe or Very Severe ME to raise awareness.
Submit yours here: https://meassociation.org.uk/.../campaigns/severe-me-week/
#SevereME #MECFS #SevereMEWeek
Submit yours here: https://meassociation.org.uk/.../campaigns/severe-me-week/
#SevereME #MECFS #SevereMEWeek
July 9, 2026 at 9:39 AM
During Severe ME Week 2026 (3–9 Aug), we're sharing artwork, poems and stories by people with Severe or Very Severe ME to raise awareness.
Submit yours here: https://meassociation.org.uk/.../campaigns/severe-me-week/
#SevereME #MECFS #SevereMEWeek
Submit yours here: https://meassociation.org.uk/.../campaigns/severe-me-week/
#SevereME #MECFS #SevereMEWeek
It is estimated that 25% of people with #ME have severe or very severe ME. This means they are housebound (severe) or bedbound (very severe) and need support with activities of daily living.
#SevereMEWeek
#SevereMEWeek
August 4, 2025 at 8:30 AM
It is estimated that 25% of people with #ME have severe or very severe ME. This means they are housebound (severe) or bedbound (very severe) and need support with activities of daily living.
#SevereMEWeek
#SevereMEWeek
Because ME is an energy-limiting condition, people with ME may have to rely on ready meals, but may be intolerant of the preservatives and additives in those meals.
#SevereMEWeek
#EndMalnutritionInME
#SevereMEWeek
#EndMalnutritionInME
August 6, 2025 at 6:42 PM
Because ME is an energy-limiting condition, people with ME may have to rely on ready meals, but may be intolerant of the preservatives and additives in those meals.
#SevereMEWeek
#EndMalnutritionInME
#SevereMEWeek
#EndMalnutritionInME
In people with #severeME, repetitive movement such as lifting a cup or cutlery causes post-exertional malaise, and they may need to be given food and drinks by a carer.
#SevereMEWeek
#EndMalnutritionInME
#SevereMEWeek
#EndMalnutritionInME
August 7, 2025 at 8:59 AM
In people with #severeME, repetitive movement such as lifting a cup or cutlery causes post-exertional malaise, and they may need to be given food and drinks by a carer.
#SevereMEWeek
#EndMalnutritionInME
#SevereMEWeek
#EndMalnutritionInME
Unpaid #carers of people with #severeME are eligible for a carer's assessment. This assesses the impact of caring on the unpaid carer.
#SevereMEWeek
www.nhs.uk/social-care-...
#SevereMEWeek
www.nhs.uk/social-care-...
Carer's assessments - Social care and support guide
See if you can get support from your council, such as extra money or a break from caring.
www.nhs.uk
August 5, 2025 at 8:35 AM
Unpaid #carers of people with #severeME are eligible for a carer's assessment. This assesses the impact of caring on the unpaid carer.
#SevereMEWeek
www.nhs.uk/social-care-...
#SevereMEWeek
www.nhs.uk/social-care-...
Dialogues for a neglected illness: A video about Severe and Very Severe ME
You can watch the videos, created by Natalie Boulton and Josh Biggs, on their website: https://www.dialogues-mecfs.co.uk/films/severeme/
#SevereMEWeek #SevereME
You can watch the videos, created by Natalie Boulton and Josh Biggs, on their website: https://www.dialogues-mecfs.co.uk/films/severeme/
#SevereMEWeek #SevereME
August 9, 2025 at 9:11 AM
Dialogues for a neglected illness: A video about Severe and Very Severe ME
You can watch the videos, created by Natalie Boulton and Josh Biggs, on their website: https://www.dialogues-mecfs.co.uk/films/severeme/
#SevereMEWeek #SevereME
You can watch the videos, created by Natalie Boulton and Josh Biggs, on their website: https://www.dialogues-mecfs.co.uk/films/severeme/
#SevereMEWeek #SevereME
Danke fürs Mitdenken!
Ich hab es mal zusätzlich aufgenommen. Ich kann leider gar nicht mehr alle gesuchten Hashtags in der Beschreibung des Feeds erwähnen; dazu hab ich zu wenige Zeichen.
Ich habe z.B. auch noch #SevereME aufgenommen, und #SevereMEWeek.
Ich hab es mal zusätzlich aufgenommen. Ich kann leider gar nicht mehr alle gesuchten Hashtags in der Beschreibung des Feeds erwähnen; dazu hab ich zu wenige Zeichen.
Ich habe z.B. auch noch #SevereME aufgenommen, und #SevereMEWeek.
August 26, 2023 at 12:42 PM
Danke fürs Mitdenken!
Ich hab es mal zusätzlich aufgenommen. Ich kann leider gar nicht mehr alle gesuchten Hashtags in der Beschreibung des Feeds erwähnen; dazu hab ich zu wenige Zeichen.
Ich habe z.B. auch noch #SevereME aufgenommen, und #SevereMEWeek.
Ich hab es mal zusätzlich aufgenommen. Ich kann leider gar nicht mehr alle gesuchten Hashtags in der Beschreibung des Feeds erwähnen; dazu hab ich zu wenige Zeichen.
Ich habe z.B. auch noch #SevereME aufgenommen, und #SevereMEWeek.
1/4: Severe ME Survey - CLOSING DATE 18.08.25
Please complete via the following link:
https://meassociation.org.uk/sme2025
#MECFS #pwME #SevereME #SevereMEWeek
Please complete via the following link:
https://meassociation.org.uk/sme2025
#MECFS #pwME #SevereME #SevereMEWeek
August 6, 2025 at 2:17 PM
1/4: Severe ME Survey - CLOSING DATE 18.08.25
Please complete via the following link:
https://meassociation.org.uk/sme2025
#MECFS #pwME #SevereME #SevereMEWeek
Please complete via the following link:
https://meassociation.org.uk/sme2025
#MECFS #pwME #SevereME #SevereMEWeek
For Severe ME Awareness Week 2025, The 25% ME Group is shining a light on unpaid carers of people with #severeME.
#SevereMEWeek.
#SevereMEWeek.
August 4, 2025 at 8:44 AM
For Severe ME Awareness Week 2025, The 25% ME Group is shining a light on unpaid carers of people with #severeME.
#SevereMEWeek.
#SevereMEWeek.
Thank you to everyone who has shared our posts and helped to raise awareness of ME/CFS during #SevereMEWeek.
Due to your support, we can continue the vital work we do. We are grateful to be able to work together with the community to help bring awareness to this debilitating disease.
#SevereME
Due to your support, we can continue the vital work we do. We are grateful to be able to work together with the community to help bring awareness to this debilitating disease.
#SevereME
August 10, 2025 at 11:30 AM
Thank you to everyone who has shared our posts and helped to raise awareness of ME/CFS during #SevereMEWeek.
Due to your support, we can continue the vital work we do. We are grateful to be able to work together with the community to help bring awareness to this debilitating disease.
#SevereME
Due to your support, we can continue the vital work we do. We are grateful to be able to work together with the community to help bring awareness to this debilitating disease.
#SevereME
Also do let us know, if you'd like to be credited and tagged on social media OR whether it is to be posted anonymously.
Thank you in advance for helping to raise awareness with your wonderfully creative artwork.
#pwME #MECFS #SevereME #pwSevereME #SevereMEWeek
Thank you in advance for helping to raise awareness with your wonderfully creative artwork.
#pwME #MECFS #SevereME #pwSevereME #SevereMEWeek
July 21, 2025 at 9:15 AM
Also do let us know, if you'd like to be credited and tagged on social media OR whether it is to be posted anonymously.
Thank you in advance for helping to raise awareness with your wonderfully creative artwork.
#pwME #MECFS #SevereME #pwSevereME #SevereMEWeek
Thank you in advance for helping to raise awareness with your wonderfully creative artwork.
#pwME #MECFS #SevereME #pwSevereME #SevereMEWeek