Lena
@lena16.bsky.social
Carer for my daughter with very severe ME | ME-Myalgic Encephalomyelitis |
Reposted by Lena
New article on Savannah’s case.
Queen Elizabeth Hospital has declined to take up Sonya Chowdhury’s offer to advocate.
Savannah remains without nutrition. Fluids restored after pressure, pain meds reduced, and she is still at serious risk.
www.thecanary.co/uk/analysis/...
Queen Elizabeth Hospital has declined to take up Sonya Chowdhury’s offer to advocate.
Savannah remains without nutrition. Fluids restored after pressure, pain meds reduced, and she is still at serious risk.
www.thecanary.co/uk/analysis/...
January 30, 2026 at 6:24 PM
New article on Savannah’s case.
Queen Elizabeth Hospital has declined to take up Sonya Chowdhury’s offer to advocate.
Savannah remains without nutrition. Fluids restored after pressure, pain meds reduced, and she is still at serious risk.
www.thecanary.co/uk/analysis/...
Queen Elizabeth Hospital has declined to take up Sonya Chowdhury’s offer to advocate.
Savannah remains without nutrition. Fluids restored after pressure, pain meds reduced, and she is still at serious risk.
www.thecanary.co/uk/analysis/...
Reposted by Lena
2/
"I can choose to exceed my limits, but I can’t choose to recover from exceeding them, and telling me to try is like telling a diabetic who’s being forced to eat a box of fudge to “try” not to become hyperglycaemic"
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #PEM
"I can choose to exceed my limits, but I can’t choose to recover from exceeding them, and telling me to try is like telling a diabetic who’s being forced to eat a box of fudge to “try” not to become hyperglycaemic"
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #PEM
January 31, 2026 at 8:30 PM
2/
"I can choose to exceed my limits, but I can’t choose to recover from exceeding them, and telling me to try is like telling a diabetic who’s being forced to eat a box of fudge to “try” not to become hyperglycaemic"
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #PEM
"I can choose to exceed my limits, but I can’t choose to recover from exceeding them, and telling me to try is like telling a diabetic who’s being forced to eat a box of fudge to “try” not to become hyperglycaemic"
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #PEM
Reposted by Lena
Extract from "An Essay on Living with Severe ME"
virology.ws/2026/01/27/t...
Blog post written by someone living with very severe ME but most of the points are pretty general, relevant for people of all severities
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
1/
virology.ws/2026/01/27/t...
Blog post written by someone living with very severe ME but most of the points are pretty general, relevant for people of all severities
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
1/
January 31, 2026 at 7:06 PM
Extract from "An Essay on Living with Severe ME"
virology.ws/2026/01/27/t...
Blog post written by someone living with very severe ME but most of the points are pretty general, relevant for people of all severities
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
1/
virology.ws/2026/01/27/t...
Blog post written by someone living with very severe ME but most of the points are pretty general, relevant for people of all severities
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
1/
Reposted by Lena
CW: assisted suicide, severe ME/CFS
Sadly, Samuel, 21, died on 30 Jan after living with severe ME/CFS.
His doctor warns about the number of patients being failed by the system: “I keep hearing the phrase - I don’t want to live like this anymore”
www.heute.at/s/samuels-ar...
Sadly, Samuel, 21, died on 30 Jan after living with severe ME/CFS.
His doctor warns about the number of patients being failed by the system: “I keep hearing the phrase - I don’t want to live like this anymore”
www.heute.at/s/samuels-ar...
February 1, 2026 at 6:34 AM
CW: assisted suicide, severe ME/CFS
Sadly, Samuel, 21, died on 30 Jan after living with severe ME/CFS.
His doctor warns about the number of patients being failed by the system: “I keep hearing the phrase - I don’t want to live like this anymore”
www.heute.at/s/samuels-ar...
Sadly, Samuel, 21, died on 30 Jan after living with severe ME/CFS.
His doctor warns about the number of patients being failed by the system: “I keep hearing the phrase - I don’t want to live like this anymore”
www.heute.at/s/samuels-ar...
Reposted by Lena
Tessa Munt MP highlighted Savannah’s case in Parliament. She said the Government’s ME delivery plan says avoidable deaths should be ‘never events’ but her critical condition was made worse by inadequate treatment and without specialist services cases like this will keep recurring.
February 5, 2026 at 6:12 PM
Tessa Munt MP highlighted Savannah’s case in Parliament. She said the Government’s ME delivery plan says avoidable deaths should be ‘never events’ but her critical condition was made worse by inadequate treatment and without specialist services cases like this will keep recurring.
Reposted by Lena
Är du förberedd inför en större samhällskris och hur förbereder man sig när man är svårt kroniskt sjuk? Om detta handlar dagens inlägg där jag också delar med mig av material från mina egna krisförberedelser.
themeinquiryreport.com/2026/01/20/o...
#mecfs #pem #hemberedskap #kronisksjukdom
themeinquiryreport.com/2026/01/20/o...
#mecfs #pem #hemberedskap #kronisksjukdom
Om krisen eller kriget kommer och du har ME
Med ett osäkert omvärldläge, extrema, väderomslag och (bitvis) dålig krisberedskap på samhällsbasis känns det viktigt att vara förberedd. Särskilt som behoven vid kronisk sjukdom och funktionsnedsä…
themeinquiryreport.com
January 20, 2026 at 11:38 AM
Är du förberedd inför en större samhällskris och hur förbereder man sig när man är svårt kroniskt sjuk? Om detta handlar dagens inlägg där jag också delar med mig av material från mina egna krisförberedelser.
themeinquiryreport.com/2026/01/20/o...
#mecfs #pem #hemberedskap #kronisksjukdom
themeinquiryreport.com/2026/01/20/o...
#mecfs #pem #hemberedskap #kronisksjukdom
Reposted by Lena
Rosie Barrett, writes on #SevereME & hospital care
www.thereforme.uk/p/sensory-he...
"Hospitals should be places of healing – but for people with severe ME, they are often sources of harm."
Screenshot from @chronicliving123.bsky.social
newsletter
chroniclivingtherapy.com/5-elsewhere-...
#MEcfs
www.thereforme.uk/p/sensory-he...
"Hospitals should be places of healing – but for people with severe ME, they are often sources of harm."
Screenshot from @chronicliving123.bsky.social
newsletter
chroniclivingtherapy.com/5-elsewhere-...
#MEcfs
October 31, 2025 at 1:51 AM
Rosie Barrett, writes on #SevereME & hospital care
www.thereforme.uk/p/sensory-he...
"Hospitals should be places of healing – but for people with severe ME, they are often sources of harm."
Screenshot from @chronicliving123.bsky.social
newsletter
chroniclivingtherapy.com/5-elsewhere-...
#MEcfs
www.thereforme.uk/p/sensory-he...
"Hospitals should be places of healing – but for people with severe ME, they are often sources of harm."
Screenshot from @chronicliving123.bsky.social
newsletter
chroniclivingtherapy.com/5-elsewhere-...
#MEcfs
Reposted by Lena
Sioned Williams in Welsh Parliament talking about severe and very severe ME/CFS. It can be “as disabling as late-stage MS or advanced cancer but doesn't get a fraction of the acknowledgement, understanding or funding”.
December 13, 2025 at 6:39 AM
Sioned Williams in Welsh Parliament talking about severe and very severe ME/CFS. It can be “as disabling as late-stage MS or advanced cancer but doesn't get a fraction of the acknowledgement, understanding or funding”.
Reposted by Lena
Today's Post : "Maeve's Story"
We MUST talk about ME. And start treating it as the deadly illness it can be.
open.substack.com/pub/undercla...
Please read, RT and subscribe.
We MUST talk about ME. And start treating it as the deadly illness it can be.
open.substack.com/pub/undercla...
Please read, RT and subscribe.
Maeve's Story
"I was hungry and thirsty, were you there? Were you there?"
open.substack.com
December 19, 2025 at 10:31 AM
Today's Post : "Maeve's Story"
We MUST talk about ME. And start treating it as the deadly illness it can be.
open.substack.com/pub/undercla...
Please read, RT and subscribe.
We MUST talk about ME. And start treating it as the deadly illness it can be.
open.substack.com/pub/undercla...
Please read, RT and subscribe.
Reposted by Lena
URGENT:
An NHS hospital is starving a severe ME patient & has now stopped giving her fluids. Savannah has now lived with severe ME for several years - but the Queen Elizabeth Hospital in South London is putting her life at risk. @h-sharland.bsky.social has the story
www.thecanary.co/uk/analysis/...
An NHS hospital is starving a severe ME patient & has now stopped giving her fluids. Savannah has now lived with severe ME for several years - but the Queen Elizabeth Hospital in South London is putting her life at risk. @h-sharland.bsky.social has the story
www.thecanary.co/uk/analysis/...
An NHS hospital is starving a severe ME patient and has now stopped giving her fluids
Savannah has now lived with severe ME for several years - but the Queen Elizabeth Hospital in South London is putting her life at risk
www.thecanary.co
January 22, 2026 at 3:44 PM
URGENT:
An NHS hospital is starving a severe ME patient & has now stopped giving her fluids. Savannah has now lived with severe ME for several years - but the Queen Elizabeth Hospital in South London is putting her life at risk. @h-sharland.bsky.social has the story
www.thecanary.co/uk/analysis/...
An NHS hospital is starving a severe ME patient & has now stopped giving her fluids. Savannah has now lived with severe ME for several years - but the Queen Elizabeth Hospital in South London is putting her life at risk. @h-sharland.bsky.social has the story
www.thecanary.co/uk/analysis/...
Reposted by Lena
I started eating again in 2024. After 11 years not eating a crumb of food or a drop of water.
In 2025 I have started ‼️ TALKING ‼️ again after 12 years of not saying a word to anyone!
What will 2026 bring❓
👀 Watch, Listen and Read the whole post in my blog:
www.whitneydafoe.com/mecfs/?post=...
In 2025 I have started ‼️ TALKING ‼️ again after 12 years of not saying a word to anyone!
What will 2026 bring❓
👀 Watch, Listen and Read the whole post in my blog:
www.whitneydafoe.com/mecfs/?post=...
December 19, 2025 at 1:55 PM
I started eating again in 2024. After 11 years not eating a crumb of food or a drop of water.
In 2025 I have started ‼️ TALKING ‼️ again after 12 years of not saying a word to anyone!
What will 2026 bring❓
👀 Watch, Listen and Read the whole post in my blog:
www.whitneydafoe.com/mecfs/?post=...
In 2025 I have started ‼️ TALKING ‼️ again after 12 years of not saying a word to anyone!
What will 2026 bring❓
👀 Watch, Listen and Read the whole post in my blog:
www.whitneydafoe.com/mecfs/?post=...
Reposted by Lena
To avoid risking flare ups and relapse in people with #severeME, NICE recommends conducting a risk assessment for each interaction.
#EndMalnutritionInME
#EndMalnutritionInME
December 22, 2025 at 9:29 AM
To avoid risking flare ups and relapse in people with #severeME, NICE recommends conducting a risk assessment for each interaction.
#EndMalnutritionInME
#EndMalnutritionInME
Reposted by Lena
Medscape: 'Multiple Abnormal Responses to Exertion Seen in ME/CFS'
'The new plasma profiling study focused on PEM..6361 unique proteins with patient-reported symptom data gathered before, during & after 2 days of maximal cardiopulmonary exercise testing..'
www.medscape.com/viewarticle/...
'The new plasma profiling study focused on PEM..6361 unique proteins with patient-reported symptom data gathered before, during & after 2 days of maximal cardiopulmonary exercise testing..'
www.medscape.com/viewarticle/...
Multiple Abnormal Responses to Exertion Seen in ME/CFS
Findings underscore the risk for graded exercise in people with post-exertional malaise and point to careful activity pacing as a safer approach.
www.medscape.com
January 9, 2026 at 2:30 PM
Medscape: 'Multiple Abnormal Responses to Exertion Seen in ME/CFS'
'The new plasma profiling study focused on PEM..6361 unique proteins with patient-reported symptom data gathered before, during & after 2 days of maximal cardiopulmonary exercise testing..'
www.medscape.com/viewarticle/...
'The new plasma profiling study focused on PEM..6361 unique proteins with patient-reported symptom data gathered before, during & after 2 days of maximal cardiopulmonary exercise testing..'
www.medscape.com/viewarticle/...
Reposted by Lena
Riksrevisionen har granskat regeringens och skolmyndigheternas arbete med kunskapsstöd till lärare och konstaterar stora brister. Bristerna har intressant nog stora likheter med vårdmyndgheternas arbete med kunskapsstödet för postinfektiösa tillstånd.
themeinquiryreport.com/2025/11/14/s...
themeinquiryreport.com/2025/11/14/s...
Stöd innehåller inte bästa tillgängliga kunskap
Idag tänkte jag bara berätta om en intressant parallell. Vid det här laget har förhoppningsvis de flesta av er snappat upp att Socialstyrelsens nationella kunskapsstöd för postinfektiösa tillstånd …
themeinquiryreport.com
November 14, 2025 at 7:25 AM
Riksrevisionen har granskat regeringens och skolmyndigheternas arbete med kunskapsstöd till lärare och konstaterar stora brister. Bristerna har intressant nog stora likheter med vårdmyndgheternas arbete med kunskapsstödet för postinfektiösa tillstånd.
themeinquiryreport.com/2025/11/14/s...
themeinquiryreport.com/2025/11/14/s...
Reposted by Lena
Läkartidningen har tagit in en debattartikel som argumenterar mot den tidigare publicerade medicinska kommentaren som argumenterar för att postcovid och ME ska ses som funktionella symtom.
themeinquiryreport.com/2025/11/16/l...
themeinquiryreport.com/2025/11/16/l...
Lästips: Bör inte klassas som funktionella tillstånd
I slutet av september skrev jag om att Läkartidningen publicerat en artikel om funktionella symtom. Det var en medicinsk kommentar och alltså ingen debattartikel. I artikeln gjorde författarna (Car…
themeinquiryreport.com
November 16, 2025 at 11:28 AM
Läkartidningen har tagit in en debattartikel som argumenterar mot den tidigare publicerade medicinska kommentaren som argumenterar för att postcovid och ME ska ses som funktionella symtom.
themeinquiryreport.com/2025/11/16/l...
themeinquiryreport.com/2025/11/16/l...
Reposted by Lena
Det är alltid kul när någon facktidskrift skriver om biomedicinsk ME-forskning, speciellt nu när SFAM mfl trycker hårt på funktionella symtom och menar att ME ingår där.
Otippat dock att det var tandhälsoförbundet! Eller kanske inte, mtp att tandläkare ofta haft större förståelse än läkare.
Otippat dock att det var tandhälsoförbundet! Eller kanske inte, mtp att tandläkare ofta haft större förståelse än läkare.
Nytt blodtest ger hopp för ME-patienter | Tandhälsoförbundet
<p>Ett nytt blodtest kan snart göra det möjligt att ställa diagnosen ME/CFS – kroniskt trötthetssyndrom – med betydligt större träffsäkerhet än tidigare. Forskare vid University of Oxford har utveckla...
www.tf.nu
October 27, 2025 at 2:46 PM
Det är alltid kul när någon facktidskrift skriver om biomedicinsk ME-forskning, speciellt nu när SFAM mfl trycker hårt på funktionella symtom och menar att ME ingår där.
Otippat dock att det var tandhälsoförbundet! Eller kanske inte, mtp att tandläkare ofta haft större förståelse än läkare.
Otippat dock att det var tandhälsoförbundet! Eller kanske inte, mtp att tandläkare ofta haft större förståelse än läkare.
Reposted by Lena
Every activity has its price. And for each one I have to pay with my health
I have to decide anew every day: talk to a friend on the phone or make the home visit of my occupational therapist; fill out the document for the lawyer or heat the food pre-cooked by others, empty the dishwasher or have
I have to decide anew every day: talk to a friend on the phone or make the home visit of my occupational therapist; fill out the document for the lawyer or heat the food pre-cooked by others, empty the dishwasher or have
Leben mit ME/CFS – eine Betroffene erzählt: „Ich vermisse mich“
Nach Corona kam der Crash – Erfahrungsbericht ME/CFS: Eine von ME Betroffene erzählt aus ihrem Alltag mit Schmerz, Erschöpfung, Mutlosigkeit
www.psychologie-heute.de
October 27, 2025 at 8:56 PM
Every activity has its price. And for each one I have to pay with my health
I have to decide anew every day: talk to a friend on the phone or make the home visit of my occupational therapist; fill out the document for the lawyer or heat the food pre-cooked by others, empty the dishwasher or have
I have to decide anew every day: talk to a friend on the phone or make the home visit of my occupational therapist; fill out the document for the lawyer or heat the food pre-cooked by others, empty the dishwasher or have
Reposted by Lena
One of the good guys in #ME research. Please give to this crowdfunded if you can.
Please Help David Tuller @davetuller1.bsky.social , Our Champion!
crowdfund.berkeley.edu/project/47768
From the October 2025 AMMES Newsletter
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
crowdfund.berkeley.edu/project/47768
From the October 2025 AMMES Newsletter
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
October 27, 2025 at 10:50 PM
One of the good guys in #ME research. Please give to this crowdfunded if you can.
Reposted by Lena
On this day twenty-seven years ago.
The Burton Trader, England. 28th October 1998.
#mecfs #myalgicencephalomyelitis #cfsme #myalgice
Refers to the then recent story of the thirteen year-old boy at the centre of a court case in the midlands of England.
The Burton Trader, England. 28th October 1998.
#mecfs #myalgicencephalomyelitis #cfsme #myalgice
Refers to the then recent story of the thirteen year-old boy at the centre of a court case in the midlands of England.
October 28, 2025 at 12:57 AM
On this day twenty-seven years ago.
The Burton Trader, England. 28th October 1998.
#mecfs #myalgicencephalomyelitis #cfsme #myalgice
Refers to the then recent story of the thirteen year-old boy at the centre of a court case in the midlands of England.
The Burton Trader, England. 28th October 1998.
#mecfs #myalgicencephalomyelitis #cfsme #myalgice
Refers to the then recent story of the thirteen year-old boy at the centre of a court case in the midlands of England.
Reposted by Lena
Justitieombudsmannen kritiserar Socialstyrelsen för att inte ha diariefört patientföreningarnas synpunkter i arbetet med kunskapsstödet.
Läs beslutet i sin helhet 👇
themeinquiryreport.com/2025/10/28/j...
Läs beslutet i sin helhet 👇
themeinquiryreport.com/2025/10/28/j...
JO kritiserar Socialstyrelsen!
Svenska Covidföreningen (SCF) anmälde Socialstyrelsen till Justitieombudsmannen (JO) i januari i år. Nu har JO:s beslut kommit och de konstaterar att Socialstyrelsen brutit mot lagen i arbetet med …
themeinquiryreport.com
October 28, 2025 at 10:21 AM
Justitieombudsmannen kritiserar Socialstyrelsen för att inte ha diariefört patientföreningarnas synpunkter i arbetet med kunskapsstödet.
Läs beslutet i sin helhet 👇
themeinquiryreport.com/2025/10/28/j...
Läs beslutet i sin helhet 👇
themeinquiryreport.com/2025/10/28/j...
Reposted by Lena
Tillsammans med alla andra problem som kunskapsstödet har, t ex att det aldrig gick på remiss och är märkligt upplagt så är det enda rimliga att skriva under namninsamlingen för att dra tillbaks kunskapsstödet så att det kan göras om.
www.mittskifte.org/petitions/dr...
www.mittskifte.org/petitions/dr...
Dra tillbaka kunskapsstödet för postinfektiösa tillstånd nu!
Sverige har antagit en nationell handlingsplan för patientsäkerhet. Där framgår att ”ingen patient ska behöva drabbas av en vårdskada”. Denna nollvision måste självklart även omfatta personer med post...
www.mittskifte.org
October 28, 2025 at 10:30 AM
Tillsammans med alla andra problem som kunskapsstödet har, t ex att det aldrig gick på remiss och är märkligt upplagt så är det enda rimliga att skriva under namninsamlingen för att dra tillbaks kunskapsstödet så att det kan göras om.
www.mittskifte.org/petitions/dr...
www.mittskifte.org/petitions/dr...
Reposted by Lena
Socialstyrelsen bröt mot lagen i arbetet med kunkapsstödet för postinfektuösa sjukdomar.
covidforeningen.se/jo-kritisera...
covidforeningen.se/jo-kritisera...
JO kritiserar Socialstyrelsen - bröt mot lagen när synpunkter inte diariefördes - Svenska Covidföreningen
Socialstyrelsen bröt mot lagen när myndigheten inte diarieförde viktiga synpunkter gällande ett nytt kunskapsstöd till vården om postcovid. Det konstaterar
covidforeningen.se
October 28, 2025 at 10:28 AM
Socialstyrelsen bröt mot lagen i arbetet med kunkapsstödet för postinfektuösa sjukdomar.
covidforeningen.se/jo-kritisera...
covidforeningen.se/jo-kritisera...
Reposted by Lena
Fler och fler ställer sig bakom namninsamlingen - har du skrivit under än?
themeinquiryreport.com/2025/10/24/a...
#namninsamling #socialstyrelsen #patientsäkerhet
themeinquiryreport.com/2025/10/24/a...
#namninsamling #socialstyrelsen #patientsäkerhet
Även RME ställer sig bakom namninsamlingen
Namninsamlingen mot Socialstyrelsens patientosäkra kunskapsstöd är inne på elfte dagen och börjar närma sig 2500 namnunderskrifter. Det glädjer mig att se att även Riksförbundet för ME-patienter st…
themeinquiryreport.com
October 24, 2025 at 6:20 AM
Fler och fler ställer sig bakom namninsamlingen - har du skrivit under än?
themeinquiryreport.com/2025/10/24/a...
#namninsamling #socialstyrelsen #patientsäkerhet
themeinquiryreport.com/2025/10/24/a...
#namninsamling #socialstyrelsen #patientsäkerhet
Reposted by Lena
Det här inlägget handlar om en viktig anmälan gällande bristande patientsäkerhet från det danska patientnätverket ”ME-patienters stemmer” och varför det också har med oss i Sverige att göra.
themeinquiryreport.com/2025/10/24/a...
themeinquiryreport.com/2025/10/24/a...
Att kalla postcovid och ME funktionellt är kontroversiellt
”Det förefaller vara ett nästintill okontroversiellt påstående bland många av de experter som jobbar med dessa tillstånd att ME/CFS, fibromyalgi, postcovid med flera, är olika manifestationer av de…
themeinquiryreport.com
October 24, 2025 at 1:24 PM
Det här inlägget handlar om en viktig anmälan gällande bristande patientsäkerhet från det danska patientnätverket ”ME-patienters stemmer” och varför det också har med oss i Sverige att göra.
themeinquiryreport.com/2025/10/24/a...
themeinquiryreport.com/2025/10/24/a...