#me-cfs — Public Fediverse posts

7/
What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@mecfs

7/
What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@mecfs

7/
What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@mecfs

7/
What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@mecfs

7/
What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@mecfs

7/
Impact of sleep dysfunction in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@mecfs

7/
Impact of sleep dysfunction in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@mecfs

7/
Impact of sleep dysfunction in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@mecfs

7/
Impact of sleep dysfunction in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@mecfs

7/
Impact of sleep dysfunction in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@mecfs

6/
What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

6/
What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

6/
What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

6/
What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

6/
What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

5/
What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

5/
What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

5/
What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

5/
What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

5/
What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

Thanks so much everyone for a massive response. I've now had as many emails as I can cope with, so no more please - thank you. They paint a really grim and heatbreaking picture. The neglect and abuse of patients goes on and on. I hope to try to do the issue justice.
#ME/CFS

RE: https://bsky.app/profile/did:plc:codfx2epdduamfycuyi5fjpb/post/3mvzbogxbcs24

Thanks so much everyone for a massive response. I've now had as many emails as I can cope with, so no more please - thank you. They paint a really grim and heatbreaking picture. The neglect and abuse of patients goes on and on. I hope to try to do the issue justice.
#ME/CFS

RE: https://bsky.app/profile/did:plc:codfx2epdduamfycuyi5fjpb/post/3mvzbogxbcs24

Thanks so much everyone for a massive response. I've now had as many emails as I can cope with, so no more please - thank you. They paint a really grim and heatbreaking picture. The neglect and abuse of patients goes on and on. I hope to try to do the issue justice.
#ME/CFS

RE: https://bsky.app/profile/did:plc:codfx2epdduamfycuyi5fjpb/post/3mvzbogxbcs24

Thanks so much everyone for a massive response. I've now had as many emails as I can cope with, so no more please - thank you. They paint a really grim and heatbreaking picture. The neglect and abuse of patients goes on and on. I hope to try to do the issue justice.
#ME/CFS

RE: https://bsky.app/profile/did:plc:codfx2epdduamfycuyi5fjpb/post/3mvzbogxbcs24

Thanks so much everyone for a massive response. I've now had as many emails as I can cope with, so no more please - thank you. They paint a really grim and heatbreaking picture. The neglect and abuse of patients goes on and on. I hope to try to do the issue justice.
#ME/CFS

RE: https://bsky.app/profile/did:plc:codfx2epdduamfycuyi5fjpb/post/3mvzbogxbcs24

People with ME/CFS are harmed not only by the disease itself, but also by the repeated demand to justify and defend their lived experience of the physical illness, and emotionally manage other people’s disbelief, finds paper by Sven Walter.

Read more: https://bit.ly/4h5GsH5

#mecfs #cfs #pwme @mecfs

People with ME/CFS are harmed not only by the disease itself, but also by the repeated demand to justify and defend their lived experience of the physical illness, and emotionally manage other people’s disbelief, finds paper by Sven Walter.

Read more: https://bit.ly/4h5GsH5

#mecfs #cfs #pwme @mecfs

People with ME/CFS are harmed not only by the disease itself, but also by the repeated demand to justify and defend their lived experience of the physical illness, and emotionally manage other people’s disbelief, finds paper by Sven Walter.

Read more: https://bit.ly/4h5GsH5

#mecfs #cfs #pwme @mecfs

People with ME/CFS are harmed not only by the disease itself, but also by the repeated demand to justify and defend their lived experience of the physical illness, and emotionally manage other people’s disbelief, finds paper by Sven Walter.

Read more: https://bit.ly/4h5GsH5

#mecfs #cfs #pwme @mecfs

People with ME/CFS are harmed not only by the disease itself, but also by the repeated demand to justify and defend their lived experience of the physical illness, and emotionally manage other people’s disbelief, finds paper by Sven Walter.

Read more: https://bit.ly/4h5GsH5

#mecfs #cfs #pwme @mecfs

Zoe Sirotiak – a person with ME/CFS, researcher, and physical therapist – has published a paper on how the societal expectation for people who are unwell to “get better” can create harm for people with chronic diseases, like ME/CFS.

Read more: https://bit.ly/4irwxOp

#mecfs #cfs #pwme @mecfs

Zoe Sirotiak – a person with ME/CFS, researcher, and physical therapist – has published a paper on how the societal expectation for people who are unwell to “get better” can create harm for people with chronic diseases, like ME/CFS.

Read more: https://bit.ly/4irwxOp

#mecfs #cfs #pwme @mecfs

Zoe Sirotiak – a person with ME/CFS, researcher, and physical therapist – has published a paper on how the societal expectation for people who are unwell to “get better” can create harm for people with chronic diseases, like ME/CFS.

Read more: https://bit.ly/4irwxOp

#mecfs #cfs #pwme @mecfs

Zoe Sirotiak – a person with ME/CFS, researcher, and physical therapist – has published a paper on how the societal expectation for people who are unwell to “get better” can create harm for people with chronic diseases, like ME/CFS.

Read more: https://bit.ly/4irwxOp

#mecfs #cfs #pwme @mecfs

Zoe Sirotiak – a person with ME/CFS, researcher, and physical therapist – has published a paper on how the societal expectation for people who are unwell to “get better” can create harm for people with chronic diseases, like ME/CFS.

Read more: https://bit.ly/4irwxOp

#mecfs #cfs #pwme @mecfs

6/
Impact of sleep dysfunction in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

6/
Impact of sleep dysfunction in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

6/
Impact of sleep dysfunction in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

6/
Impact of sleep dysfunction in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

6/
Impact of sleep dysfunction in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

4/
What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

4/
What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

4/
What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

4/
What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

4/
What sleep dysfunction in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

ME Research UK:

In the third deep-dive of our Symptom Saturday series, we explored sleep dysfunction in ME/CFS – including lived experience, patterns of sleep disruption, and research suggesting challenges across the brain and nervous system. https://tinyurl.com/sleepdyssymptomsat

Survey: https://tinyurl.com/sleepdyssurveyME

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

ME Research UK:

In the third deep-dive of our Symptom Saturday series, we explored sleep dysfunction in ME/CFS – including lived experience, patterns of sleep disruption, and research suggesting challenges across the brain and nervous system. https://tinyurl.com/sleepdyssymptomsat

Survey: https://tinyurl.com/sleepdyssurveyME

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

ME Research UK:

In the third deep-dive of our Symptom Saturday series, we explored sleep dysfunction in ME/CFS – including lived experience, patterns of sleep disruption, and research suggesting challenges across the brain and nervous system. https://tinyurl.com/sleepdyssymptomsat

Survey: https://tinyurl.com/sleepdyssurveyME

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

ME Research UK:

In the third deep-dive of our Symptom Saturday series, we explored sleep dysfunction in ME/CFS – including lived experience, patterns of sleep disruption, and research suggesting challenges across the brain and nervous system. https://tinyurl.com/sleepdyssymptomsat

Survey: https://tinyurl.com/sleepdyssurveyME

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

ME Research UK:

In the third deep-dive of our Symptom Saturday series, we explored sleep dysfunction in ME/CFS – including lived experience, patterns of sleep disruption, and research suggesting challenges across the brain and nervous system. https://tinyurl.com/sleepdyssymptomsat

Survey: https://tinyurl.com/sleepdyssurveyME

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

Intending to write another column about the treatment of #ME/CFS patients this week, pegged to new research findings on the biological basis. My question for sufferers:
Are any of you still being offered inappropriate (psych/GET etc) "treatments"?
Please email george at monbiot dot info. Thanks.

Intending to write another column about the treatment of #ME/CFS patients this week, pegged to new research findings on the biological basis. My question for sufferers:
Are any of you still being offered inappropriate (psych/GET etc) "treatments"?
Please email george at monbiot dot info. Thanks.

Intending to write another column about the treatment of #ME/CFS patients this week, pegged to new research findings on the biological basis. My question for sufferers:
Are any of you still being offered inappropriate (psych/GET etc) "treatments"?
Please email george at monbiot dot info. Thanks.

Intending to write another column about the treatment of #ME/CFS patients this week, pegged to new research findings on the biological basis. My question for sufferers:
Are any of you still being offered inappropriate (psych/GET etc) "treatments"?
Please email george at monbiot dot info. Thanks.

Intending to write another column about the treatment of #ME/CFS patients this week, pegged to new research findings on the biological basis. My question for sufferers:
Are any of you still being offered inappropriate (psych/GET etc) "treatments"?
Please email george at monbiot dot info. Thanks.

#Umzug #Küchenausstattung
In meiner Naivität dachte ich: Ein passendes Induktionskochfeld habe ich schnell gefunden.

Ha ha ha! 🤣🤣🤣

Dann ist mir aufgefallen: Die Dinger piepen beim Einschalten und bei der Bedienung. 🙄
Tasten-/Quittungstöne will ich nicht, weil die nerven. Und meine Frau verträgt die gesundheitlich nicht. #MECFS

Ich konnte bis jetzt erst ein Gerät unter 600€ finden, bei dem man angeblich die Signaltöne ausschalten kann (wichtige Alarme ausgenommen) UND Ein-Klick-Einstellung hat, also keine +/- Tasten: Gorenje GI6433SRWF (G800 Serie)

Also nix mit Schnäppchen für 300€.
🤬
Und das nur, weil die Hersteller das nicht in die Software integrieren wollen, denn technisch wäre das total simpel und ohne Mehrkosten zu lösen.

BSH hat in dieser Preisklasse nur +/- Tasten, da brauch ich gar nicht erst nach der Deaktivierbarkeit der Signaltöne recherchieren.
Und AEG/Electrolux können die Signaltöne nicht komplett deaktivieren. Die piepen trotzdem beim Einschalten und wenn das Bedienfeld abgedeckt wird. 🤦‍♂️

#Umzug #Küchenausstattung
In meiner Naivität dachte ich: Ein passendes Induktionskochfeld habe ich schnell gefunden.

Ha ha ha! 🤣🤣🤣

Dann ist mir aufgefallen: Die Dinger piepen beim Einschalten und bei der Bedienung. 🙄
Tasten-/Quittungstöne will ich nicht, weil die nerven. Und meine Frau verträgt die gesundheitlich nicht. #MECFS

Ich konnte bis jetzt erst ein Gerät unter 600€ finden, bei dem man angeblich die Signaltöne ausschalten kann (wichtige Alarme ausgenommen) UND Ein-Klick-Einstellung hat, also keine +/- Tasten: Gorenje GI6433SRWF (G800 Serie)

Also nix mit Schnäppchen für 300€.
🤬
Und das nur, weil die Hersteller das nicht in die Software integrieren wollen, denn technisch wäre das total simpel und ohne Mehrkosten zu lösen.

BSH hat in dieser Preisklasse nur +/- Tasten, da brauch ich gar nicht erst nach der Deaktivierbarkeit der Signaltöne recherchieren.
Und AEG/Electrolux können die Signaltöne nicht komplett deaktivieren. Die piepen trotzdem beim Einschalten und wenn das Bedienfeld abgedeckt wird. 🤦‍♂️

#Umzug #Küchenausstattung
In meiner Naivität dachte ich: Ein Induktionskochfeld habe ich schnell gefunden.

Ha ha ha! 🤣🤣🤣

Dann ist mir aufgefallen: Die Dinger piepen beim Einschalten und bei der Bedienung. 🙄
Tasten-/Quittungstöne will ich nicht, weil die nerven. Und meine Frau verträgt die gesundheitlich nicht. #MECFS

Ich konnte bis jetzt erst ein Gerät unter 600€ finden, bei dem man angeblich die Signaltöne ausschalten kann (wichtige Alarme ausgenommen): Gorenje GI6433SRWF (G800 Serie)

Also nix mit Schnäppchen für 300€.
🤬

#Umzug #Küchenausstattung
In meiner Naivität dachte ich: Ein Induktionskochfeld habe ich schnell gefunden.

Ha ha ha! 🤣🤣🤣

Dann ist mir aufgefallen: Die Dinger piepen beim Einschalten und bei der Bedienung. 🙄
Tasten-/Quittungstöne will ich nicht, weil die nerven. Und meine Frau verträgt die gesundheitlich nicht. #MECFS

Ich konnte bis jetzt erst ein Gerät unter 600€ finden, bei dem man angeblich die Signaltöne ausschalten kann (wichtige Alarme ausgenommen): Gorenje GI6433SRWF (G800 Serie)

Also nix mit Schnäppchen für 300€.
🤬

#Umzug #Küchenausstattung
In meiner Naivität dachte ich: Ein passendes Induktionskochfeld habe ich schnell gefunden.

Ha ha ha! 🤣🤣🤣

Dann ist mir aufgefallen: Die Dinger piepen beim Einschalten und bei der Bedienung. 🙄
Tasten-/Quittungstöne will ich nicht, weil die nerven. Und meine Frau verträgt die gesundheitlich nicht. #MECFS

Ich konnte bis jetzt erst ein Gerät unter 600€ finden, bei dem man angeblich die Signaltöne ausschalten kann (wichtige Alarme ausgenommen) UND Ein-Klick-Einstellung hat, also keine +/- Tasten: Gorenje GI6433SRWF (G800 Serie)

Also nix mit Schnäppchen für 300€.
🤬
Und das nur, weil die Hersteller das nicht in die Software integrieren wollen, denn technisch wäre das total simpel und ohne Mehrkosten zu lösen.

BSH hat in dieser Preisklasse nur +/- Tasten, da brauch ich gar nicht erst nach der Deaktivierbarkeit der Signaltöne recherchieren.
Und AEG/Electrolux können die Signaltöne nicht komplett deaktivieren. Die piepen trotzdem beim Einschalten und wenn das Bedienfeld abgedeckt wird. 🤦‍♂️