#elci — Public Fediverse posts

#PEM #LeonardJason #DSQPEM2 #Questionnaire

#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI #ELC

Via Tom Kindlon's ME CFS & related page: News, Research and more on Facebook, @tomkindlon here.

Link to explorationpub.com:

https://www.explorationpub.com/Journals/ent/Article/1004116?fbclid=IwdGRleAOT9H9leHRuA2FlbQIxMQBzcnRjBmFwcF9pZA8xNzM4NDc2NDI2NzAzNzAAAR476-toqBdRCVEFXatvHemS9Da2SvmcK6S2r_TY13sSQ_YUt8m_n5pD1OM1Zg_aem__CMSqSImOPkVVo2i70V_xA

#PEM #LeonardJason #DSQPEM2 #Questionnaire

#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI #ELC

Via Tom Kindlon's ME CFS & related page: News, Research and more on Facebook, @tomkindlon here.

Link to explorationpub.com:

https://www.explorationpub.com/Journals/ent/Article/1004116?fbclid=IwdGRleAOT9H9leHRuA2FlbQIxMQBzcnRjBmFwcF9pZA8xNzM4NDc2NDI2NzAzNzAAAR476-toqBdRCVEFXatvHemS9Da2SvmcK6S2r_TY13sSQ_YUt8m_n5pD1OM1Zg_aem__CMSqSImOPkVVo2i70V_xA

#PEM #LeonardJason #DSQPEM2 #Questionnaire

#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI #ELC

Via Tom Kindlon's ME CFS & related page: News, Research and more on Facebook, @tomkindlon here.

Link to explorationpub.com:

https://www.explorationpub.com/Journals/ent/Article/1004116?fbclid=IwdGRleAOT9H9leHRuA2FlbQIxMQBzcnRjBmFwcF9pZA8xNzM4NDc2NDI2NzAzNzAAAR476-toqBdRCVEFXatvHemS9Da2SvmcK6S2r_TY13sSQ_YUt8m_n5pD1OM1Zg_aem__CMSqSImOPkVVo2i70V_xA

#PEM #LeonardJason #DSQPEM2 #Questionnaire

#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI #ELC

Via Tom Kindlon's ME CFS & related page: News, Research and more on Facebook, @tomkindlon here.

Link to explorationpub.com:

https://www.explorationpub.com/Journals/ent/Article/1004116?fbclid=IwdGRleAOT9H9leHRuA2FlbQIxMQBzcnRjBmFwcF9pZA8xNzM4NDc2NDI2NzAzNzAAAR476-toqBdRCVEFXatvHemS9Da2SvmcK6S2r_TY13sSQ_YUt8m_n5pD1OM1Zg_aem__CMSqSImOPkVVo2i70V_xA

2/
Introducing “Energy Limiting Conditions”: The Emergence and Evolution of a New Impairment Concept

https://www.scienceopen.com/hosted-document?doi=10.13169/intljofdissocjus.5.2.0001

Screenshot from latest Science for ME weekly update

#EnergyLimitingConditions #Spoonie #chronicillness #Spoonies #ELCI #MEcfs #LongCovid #ChronicFatigue @mecfs @longcovid @pots

2/
Introducing “Energy Limiting Conditions”: The Emergence and Evolution of a New Impairment Concept

https://www.scienceopen.com/hosted-document?doi=10.13169/intljofdissocjus.5.2.0001

Screenshot from latest Science for ME weekly update

#EnergyLimitingConditions #Spoonie #chronicillness #Spoonies #ELCI #MEcfs #LongCovid #ChronicFatigue @mecfs @longcovid @pots

New:
Introducing “Energy Limiting Conditions”: The Emergence and Evolution of a New Impairment Concept

Free
https://www.scienceopen.com/hosted-document?doi=10.13169/intljofdissocjus.5.2.0001

Sympathetic exploration of topic

#EnergyLimitingConditions #Spoonie #Fatigue #chronicillness #Spoonies #ELCI @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid @longcovid #POTS @pots

New:
Introducing “Energy Limiting Conditions”: The Emergence and Evolution of a New Impairment Concept

Free
https://www.scienceopen.com/hosted-document?doi=10.13169/intljofdissocjus.5.2.0001

Sympathetic exploration of topic

#EnergyLimitingConditions #Spoonie #Fatigue #chronicillness #Spoonies #ELCI @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid @longcovid #POTS @pots

The Coroner of the #MaeveInquest has issued a REGULATION 28: REPORT TO PREVENT FUTURE DEATHS sent to inter alia the representative of #UKgov & #NHSEngland. The link is to the three-page document, which is succinct and clear.

#SevereME #pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI

Link to #Virology blog:

https://virology.ws/wp-content/uploads/2024/10/Maeve-Boothby-ONeill-regulation-28-report.pdf

The Coroner of the #MaeveInquest has issued a REGULATION 28: REPORT TO PREVENT FUTURE DEATHS sent to inter alia the representative of #UKgov & #NHSEngland. The link is to the three-page document, which is succinct and clear.

#SevereME #pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI

Link to #Virology blog:

https://virology.ws/wp-content/uploads/2024/10/Maeve-Boothby-ONeill-regulation-28-report.pdf

The Coroner of the #MaeveInquest has issued a REGULATION 28: REPORT TO PREVENT FUTURE DEATHS sent to inter alia the representative of #UKgov & #NHSEngland. The link is to the three-page document, which is succinct and clear.

#SevereME #pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI

Link to #Virology blog:

https://virology.ws/wp-content/uploads/2024/10/Maeve-Boothby-ONeill-regulation-28-report.pdf

The Coroner of the #MaeveInquest has issued a REGULATION 28: REPORT TO PREVENT FUTURE DEATHS sent to inter alia the representative of #UKgov & #NHSEngland. The link is to the three-page document, which is succinct and clear.

#SevereME #pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI

Link to #Virology blog:

https://virology.ws/wp-content/uploads/2024/10/Maeve-Boothby-ONeill-regulation-28-report.pdf

The Coroner of the #MaeveInquest has issued a REGULATION 28: REPORT TO PREVENT FUTURE DEATHS sent to inter alia the representative of #UKgov & #NHSEngland. The link is to the three-page document, which is succinct and clear.

#SevereME #pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI

Link to #Virology blog:

https://virology.ws/wp-content/uploads/2024/10/Maeve-Boothby-ONeill-regulation-28-report.pdf

It is difficult to believe that #neoliberal #Labour, that is #UKgov, will listen let alone take action needed within the #NHS!

#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #Covid #LongCovid #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI

Link to #BMJ :

https://ebn.bmj.com/content/early/2024/08/29/ebnurs-2024-104177

It is difficult to believe that #neoliberal #Labour, that is #UKgov, will listen let alone take action needed within the #NHS!

#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #Covid #LongCovid #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI

Link to #BMJ :

https://ebn.bmj.com/content/early/2024/08/29/ebnurs-2024-104177

It is difficult to believe that #neoliberal #Labour, that is #UKgov, will listen let alone take action needed within the #NHS!

#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #Covid #LongCovid #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI

Link to #BMJ :

https://ebn.bmj.com/content/early/2024/08/29/ebnurs-2024-104177

It is difficult to believe that #neoliberal #Labour, that is #UKgov, will listen let alone take action needed within the #NHS!

#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #Covid #LongCovid #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI

Link to #BMJ :

https://ebn.bmj.com/content/early/2024/08/29/ebnurs-2024-104177

It is difficult to believe that #neoliberal #Labour, that is #UKgov, will listen let alone take action needed within the #NHS!

#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #Covid #LongCovid #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI

Link to #BMJ :

https://ebn.bmj.com/content/early/2024/08/29/ebnurs-2024-104177

Please consider signing this petition to force #Cochrane to fulfil their promises and to stop delaying & obfuscating.

#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI

https://chng.it/bNj7W9bhst

Please consider signing this petition to force #Cochrane to fulfil their promises and to stop delaying & obfuscating.

#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI

https://chng.it/bNj7W9bhst

Please consider signing this petition to force #Cochrane to fulfil their promises and to stop delaying & obfuscating.

#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI

https://chng.it/bNj7W9bhst

Please consider signing this petition to force #Cochrane to fulfil their promises and to stop delaying & obfuscating.

#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI

https://chng.it/bNj7W9bhst

Please consider signing this petition to force #Cochrane to fulfil their promises and to stop delaying & obfuscating.

#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI

https://chng.it/bNj7W9bhst

New US research:
Defining fatigue from the experiences of patients living with chronic fatigue

https://www.frontiersin.org/journals/medicine/articles/10.3389/fmed.2024.1429275/full

From what I can see, this does not refer to CFS specifically but CFS wasn't an exclusion either

#chronicfatigue #Spoonies #Spoonie #Spoonielife #ELCI
#chronicillness @chronicillness
@spoonies
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

New US research:
Defining fatigue from the experiences of patients living with chronic fatigue

https://www.frontiersin.org/journals/medicine/articles/10.3389/fmed.2024.1429275/full

From what I can see, this does not refer to CFS specifically but CFS wasn't an exclusion either

#chronicfatigue #Spoonies #Spoonie #Spoonielife #ELCI
#chronicillness @chronicillness
@spoonies
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

#LadyShambles’ take on the #MaeveInquest result, per her worthy comment to @DavidTuller1 & @ValeriEliotSmit’s overview & commentary:

1. M.E. Is a ‘physical’ (as opposed to psychological) disease;

2. M.E. can cause death;

3. #MEKills

Link to #Virology blog:

https://virology.ws/2024/08/12/trial-by-error-valerie-eliot-smith-on-the-inquest-findings/?sfnsn=scwspwa

#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI

#LadyShambles’ take on the #MaeveInquest result, per her worthy comment to @DavidTuller1 & @ValeriEliotSmit’s overview & commentary:

1. M.E. Is a ‘physical’ (as opposed to psychological) disease;

2. M.E. can cause death;

3. #MEKills

Link to #Virology blog:

https://virology.ws/2024/08/12/trial-by-error-valerie-eliot-smith-on-the-inquest-findings/?sfnsn=scwspwa

#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI

#LadyShambles’ take on the #MaeveInquest result, per her worthy comment to @DavidTuller1 & @ValeriEliotSmit’s overview & commentary:

1. M.E. Is a ‘physical’ (as opposed to psychological) disease;

2. M.E. can cause death;

3. #MEKills

Link to #Virology blog:

https://virology.ws/2024/08/12/trial-by-error-valerie-eliot-smith-on-the-inquest-findings/?sfnsn=scwspwa

#pwME #MyalgicEncephalomyelitis #MECFS #ChronicFatigueSyndrome #CFS #PostViralFatigueSyndrome #PVFS #PostViralDisorder #ELCI

Ongoing failures by #NHS towards #pwME, especially those of us with #SevereME or #VerySevereME, really do need the UK ME charities to step up their game. My suggestion is a national #BuddySystem.

Link to #Blogger: https://crippledqueeranglo-europeanranter.blogspot.com/2023/05/pink-triangles-blue-triangles.html

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #CFS #MECFS
#PostViralFatigueSyndrome #PVFS #PostViralDisorder
#ELCI

Ongoing failures by #NHS towards #pwME, especially those of us with #SevereME or #VerySevereME, really do need the UK ME charities to step up their game. My suggestion is a national #BuddySystem.

Link to #Blogger: https://crippledqueeranglo-europeanranter.blogspot.com/2023/05/pink-triangles-blue-triangles.html

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #CFS #MECFS
#PostViralFatigueSyndrome #PVFS #PostViralDisorder
#ELCI

Today, 8th August, is #SevereMEDay aka #SevereMEAwarenessDay.

I have actually managed to write a blog-post this year!

#pwME #SevereME #VerySevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralFatigueSyndrome #MECFS #ELCI #PostViralDisorder

Link to Blogger:

https://crippledqueeranglo-europeanranter.blogspot.com/2024/08/severe-me-day-2024-funcap55.html

Today, 8th August, is #SevereMEDay aka #SevereMEAwarenessDay.

I have actually managed to write a blog-post this year!

#pwME #SevereME #VerySevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralFatigueSyndrome #MECFS #ELCI #PostViralDisorder

Link to Blogger:

https://crippledqueeranglo-europeanranter.blogspot.com/2024/08/severe-me-day-2024-funcap55.html

Recognised by #WHO since 1969 as a #DiseaseOfTheNervousSystem:

#ICD10 #G93point3

#ICD11 #8E49

Despite efforts of the #BioPsychoSocial brigade to have it reclassified, it remains categorised as a neurological illness.

#pwME #MyalgicEncephalomyelitis #MECFS #CFS #ChronicFatigueSyndrome #PVFS #PostViralFatigueSyndrome #ELCI #PostViralDisorder

Recognised by #WHO since 1969 as a #DiseaseOfTheNervousSystem:

#ICD10 #G93point3

#ICD11 #8E49

Despite efforts of the #BioPsychoSocial brigade to have it reclassified, it remains categorised as a neurological illness.

#pwME #MyalgicEncephalomyelitis #MECFS #CFS #ChronicFatigueSyndrome #PVFS #PostViralFatigueSyndrome #ELCI #PostViralDisorder

Recognised by #WHO since 1969 as a #DiseaseOfTheNervousSystem:

#ICD10 #G93point3

#ICD11 #8E49

Despite efforts of the #BioPsychoSocial brigade to have it reclassified, it remains categorised as a neurological illness.

#pwME #MyalgicEncephalomyelitis #MECFS #CFS #ChronicFatigueSyndrome #PVFS #PostViralFatigueSyndrome #ELCI #PostViralDisorder

Recognised by #WHO since 1969 as a #DiseaseOfTheNervousSystem:

#ICD10 #G93point3

#ICD11 #8E49

Despite efforts of the #BioPsychoSocial brigade to have it reclassified, it remains categorised as a neurological illness.

#pwME #MyalgicEncephalomyelitis #MECFS #CFS #ChronicFatigueSyndrome #PVFS #PostViralFatigueSyndrome #ELCI #PostViralDisorder

Re #MaeveInquest :

I should have anticipated that all involved would have mentioned how they had since done various courses etc. in order to raise their awareness, knowledge & expertise of #MyalgicEncephalomyelitis #MECFS. If they did, I missed mention… 😡

#pwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralFatigueSyndrome #MECFS #ELCI #PostViralDisorder

Re #MaeveInquest :

I should have anticipated that all involved would have mentioned how they had since done various courses etc. in order to raise their awareness, knowledge & expertise of #MyalgicEncephalomyelitis #MECFS. If they did, I missed mention… 😡

#pwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralFatigueSyndrome #MECFS #ELCI #PostViralDisorder

@MorganXAmethyst

Not a recommendation because I have not tried it. However there is a subscription-service that apparently 80,000 folk with #ELCI s such as #pwME & #FMS use.

Here is the link: https://www.makevisible.com/

@MorganXAmethyst

Not a recommendation because I have not tried it. However there is a subscription-service that apparently 80,000 folk with #ELCI s such as #pwME & #FMS use.

Here is the link: https://www.makevisible.com/

May has been #InternationalMEAwarenessMonth #MEAwarenessMonth, but, alas, I have not been well enough to post nor share much this year. Here is a #poem from a decade ago. Matters have ameliorated slightly in that time, in that awareness has been raised and the issues are within the sights of politicos across the Globe due to #LongCovid.

#pwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralFatigueSyndrome #MECFS #ELCI #PostViralDisorder

May has been #InternationalMEAwarenessMonth #MEAwarenessMonth, but, alas, I have not been well enough to post nor share much this year. Here is a #poem from a decade ago. Matters have ameliorated slightly in that time, in that awareness has been raised and the issues are within the sights of politicos across the Globe due to #LongCovid.

#pwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralFatigueSyndrome #MECFS #ELCI #PostViralDisorder

Couldn’t find #TheChronicCollaboration are on here, but this is an urgent letter - action prior to 30th April for a UK Parliamentary debate. If you are a #pwME or a carer or an ally, please consider signing the letter - and recall to send the email confirmation!

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralFatigueSyndrome #MECFS #ELCI #PostViralDisorder

https://openletter.earth/sajid-javid-please-raise-very-severe-and-severe-me-cases-in-your-westminster-hall-debate-a0d1b905

Couldn’t find #TheChronicCollaboration are on here, but this is an urgent letter - action prior to 30th April for a UK Parliamentary debate. If you are a #pwME or a carer or an ally, please consider signing the letter - and recall to send the email confirmation!

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralFatigueSyndrome #MECFS #ELCI #PostViralDisorder

https://openletter.earth/sajid-javid-please-raise-very-severe-and-severe-me-cases-in-your-westminster-hall-debate-a0d1b905

What are energy-limiting conditions? An introduction to chronic illness at work

http://www.catherinehale.net/2024/02/what-are-energy-limiting-conditions.html

#chronicillness #Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll #ELCI #MEcfs #LongCovid @chronicillness
@spoonies
@longcovid @mecfs

What are energy-limiting conditions? An introduction to chronic illness at work

http://www.catherinehale.net/2024/02/what-are-energy-limiting-conditions.html

#chronicillness #Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll #ELCI #MEcfs #LongCovid @chronicillness
@spoonies
@longcovid @mecfs

Just finished sorting through the last of the stuff removed from my bed-cell one year ago in order to deep-cleanse my room.

And thus a reminder it’s time to re-do! 😂

#pwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralFatigueSyndrome #MECFS #ELCI #PostViralDisorder

Just finished sorting through the last of the stuff removed from my bed-cell one year ago in order to deep-cleanse my room.

And thus a reminder it’s time to re-do! 😂

#pwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PostViralFatigueSyndrome #MECFS #ELCI #PostViralDisorder

2/

“Isolation is a way of life in the wastelands. You are too exhausted to go anywhere, to do anything, to meet anyone. The possibility of holding down a job is consigned to history. Travel is a privilege which others enjoy.”

#Spoonie #PwME #MEcfs #ELCI #homebound #housebound @spoonies @chronicillness

2/

“Isolation is a way of life in the wastelands. You are too exhausted to go anywhere, to do anything, to meet anyone. The possibility of holding down a job is consigned to history. Travel is a privilege which others enjoy.”

#Spoonie #PwME #MEcfs #ELCI #homebound #housebound @spoonies @chronicillness