#pwme — Public Fediverse posts

Polly Patterson - Supporting Clients Through Medical Gaslighting

https://chroniclivingtherapy.com/supporting-clients-through-medical-gaslighting/

Screenshot from latest edition of the Chronic Living Therapy email bulletin

#MedicalGaslighting #MEcfs #PwME #LongCovid #chronicillness
@mecfs @longcovid #chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

Therapy via Messaging

https://chroniclivingtherapy.com/insights-text-based-therapy/

Screenshot from latest edition of the Chronic Living Therapy email bulletin

#MEcfs #Spoonies #PwME #Spoonie #SevereME #LongCovid #CFS #chronicillness
@mecfs @longcovid #POTS @pots

Therapy via Messaging

https://chroniclivingtherapy.com/insights-text-based-therapy/

Screenshot from latest edition of the Chronic Living Therapy email bulletin

#MEcfs #Spoonies #PwME #Spoonie #SevereME #LongCovid #CFS #chronicillness
@mecfs @longcovid #POTS @pots

Therapy via Messaging

https://chroniclivingtherapy.com/insights-text-based-therapy/

Screenshot from latest edition of the Chronic Living Therapy email bulletin

#MEcfs #Spoonies #PwME #Spoonie #SevereME #LongCovid #CFS #chronicillness
@mecfs @longcovid #POTS @pots

Therapy via Messaging

https://chroniclivingtherapy.com/insights-text-based-therapy/

Screenshot from latest edition of the Chronic Living Therapy email bulletin

#MEcfs #Spoonies #PwME #Spoonie #SevereME #LongCovid #CFS #chronicillness
@mecfs @longcovid #POTS @pots

Therapy via Messaging

https://chroniclivingtherapy.com/insights-text-based-therapy/

Screenshot from latest edition of the Chronic Living Therapy email bulletin

#MEcfs #Spoonies #PwME #Spoonie #SevereME #LongCovid #CFS #chronicillness
@mecfs @longcovid #POTS @pots

Watch for free a 15-minute fictional film on person with an unspecified invisible chronic illness
https://www.underground-cinema.com/screening-room?wix-vod-video-id=e133c0f3001b4d09ad9e8ed8aab8c804&wix-vod-comp-id=comp-mtueb2ju

*just create a login & scroll to see Warrior Short Film until midnight Sun 13

As someone who took 5+ years to get diagnosed, sadly I can relate

#chronicillness #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs #pots @pots #LongCovid @longcovid #invisibleillness #chronicpain

Watch for free a 15-minute fictional film on person with an unspecified invisible chronic illness
https://www.underground-cinema.com/screening-room?wix-vod-video-id=e133c0f3001b4d09ad9e8ed8aab8c804&wix-vod-comp-id=comp-mtueb2ju

*just create a login & scroll to see Warrior Short Film until midnight Sun 13

As someone who took 5+ years to get diagnosed, sadly I can relate

#chronicillness #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs #pots @pots #LongCovid @longcovid #invisibleillness #chronicpain

Watch for free a 15-minute fictional film on person with an unspecified invisible chronic illness
https://www.underground-cinema.com/screening-room?wix-vod-video-id=e133c0f3001b4d09ad9e8ed8aab8c804&wix-vod-comp-id=comp-mtueb2ju

*just create a login & scroll to see Warrior Short Film until midnight Sun 13

As someone who took 5+ years to get diagnosed, sadly I can relate

#chronicillness #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs #pots @pots #LongCovid @longcovid #invisibleillness #chronicpain

Watch for free a 15-minute fictional film on person with an unspecified invisible chronic illness
https://www.underground-cinema.com/screening-room?wix-vod-video-id=e133c0f3001b4d09ad9e8ed8aab8c804&wix-vod-comp-id=comp-mtueb2ju

*just create a login & scroll to see Warrior Short Film until midnight Sun 13

As someone who took 5+ years to get diagnosed, sadly I can relate

#chronicillness #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs #pots @pots #LongCovid @longcovid #invisibleillness #chronicpain

Watch for free a 15-minute fictional film on person with an unspecified invisible chronic illness
https://www.underground-cinema.com/screening-room?wix-vod-video-id=e133c0f3001b4d09ad9e8ed8aab8c804&wix-vod-comp-id=comp-mtueb2ju

*just create a login & scroll to see Warrior Short Film until midnight Sun 13

As someone who took 5+ years to get diagnosed, sadly I can relate

#chronicillness #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs #pots @pots #LongCovid @longcovid #invisibleillness #chronicpain

Media gaslighting = patient harm

https://chroniclivingtherapy.com/brain-retraining-merry-go-round/

Screenshot from latest edition of the Chronic Living Therapy email bulletin

#MEcfs #PwME #LongCovid #CFS #chronicillness
@mecfs @longcovid

Media gaslighting = patient harm

https://chroniclivingtherapy.com/brain-retraining-merry-go-round/

Screenshot from latest edition of the Chronic Living Therapy email bulletin

#MEcfs #PwME #LongCovid #CFS #chronicillness
@mecfs @longcovid

Media gaslighting = patient harm

https://chroniclivingtherapy.com/brain-retraining-merry-go-round/

Screenshot from latest edition of the Chronic Living Therapy email bulletin

#MEcfs #PwME #LongCovid #CFS #chronicillness
@mecfs @longcovid

Media gaslighting = patient harm

https://chroniclivingtherapy.com/brain-retraining-merry-go-round/

Screenshot from latest edition of the Chronic Living Therapy email bulletin

#MEcfs #PwME #LongCovid #CFS #chronicillness
@mecfs @longcovid

Media gaslighting = patient harm

https://chroniclivingtherapy.com/brain-retraining-merry-go-round/

Screenshot from latest edition of the Chronic Living Therapy email bulletin

#MEcfs #PwME #LongCovid #CFS #chronicillness
@mecfs @longcovid

"ME, CFS and Long Covid Service Care and Support Plan (CSP)"

3-page document, one of a number of potentially useful files available here:
https://suffolkfed.org.uk/healthcare-services/me-cfs-long-covid/

This service development used a lot of patient input

#MEcfs #LongCovid #PwME 
@mecfs @longcovid

"ME, CFS and Long Covid Service Care and Support Plan (CSP)"

3-page document, one of a number of potentially useful files available here:
https://suffolkfed.org.uk/healthcare-services/me-cfs-long-covid/

This service development used a lot of patient input

#MEcfs #LongCovid #PwME 
@mecfs @longcovid

"ME, CFS and Long Covid Service Care and Support Plan (CSP)"

3-page document, one of a number of potentially useful files available here:
https://suffolkfed.org.uk/healthcare-services/me-cfs-long-covid/

This service development used a lot of patient input

#MEcfs #LongCovid #PwME 
@mecfs @longcovid

"ME, CFS and Long Covid Service Care and Support Plan (CSP)"

3-page document, one of a number of potentially useful files available here:
https://suffolkfed.org.uk/healthcare-services/me-cfs-long-covid/

This service development used a lot of patient input

#MEcfs #LongCovid #PwME 
@mecfs @longcovid

"ME, CFS and Long Covid Service Care and Support Plan (CSP)"

3-page document, one of a number of potentially useful files available here:
https://suffolkfed.org.uk/healthcare-services/me-cfs-long-covid/

This service development used a lot of patient input

#MEcfs #LongCovid #PwME 
@mecfs @longcovid

New US 🇺🇸 research

Total blood volume and red blood cell volume are not associated with orthostatic intolerance in adults with myalgic encephalomyelitis/chronic fatigue syndrome

Free fulltext:
https://physoc.onlinelibrary.wiley.com/doi/10.14814/phy2.71087

#MEcfs #PwME #CFS #OrthostaticIntolerance  @mecfs

New US 🇺🇸 research

Total blood volume and red blood cell volume are not associated with orthostatic intolerance in adults with myalgic encephalomyelitis/chronic fatigue syndrome

Free fulltext:
https://physoc.onlinelibrary.wiley.com/doi/10.14814/phy2.71087

#MEcfs #PwME #CFS #OrthostaticIntolerance  @mecfs

New US 🇺🇸 research

Total blood volume and red blood cell volume are not associated with orthostatic intolerance in adults with myalgic encephalomyelitis/chronic fatigue syndrome

Free fulltext:
https://physoc.onlinelibrary.wiley.com/doi/10.14814/phy2.71087

#MEcfs #PwME #CFS #OrthostaticIntolerance  @mecfs

New US 🇺🇸 research

Total blood volume and red blood cell volume are not associated with orthostatic intolerance in adults with myalgic encephalomyelitis/chronic fatigue syndrome

Free fulltext:
https://physoc.onlinelibrary.wiley.com/doi/10.14814/phy2.71087

#MEcfs #PwME #CFS #OrthostaticIntolerance  @mecfs

New US 🇺🇸 research

Total blood volume and red blood cell volume are not associated with orthostatic intolerance in adults with myalgic encephalomyelitis/chronic fatigue syndrome

Free fulltext:
https://physoc.onlinelibrary.wiley.com/doi/10.14814/phy2.71087

#MEcfs #PwME #CFS #OrthostaticIntolerance  @mecfs

4/
Here is a link to the LinkedIn post on this, if anyone wants to like it/react to it; comment on it; and/or repost it:
https://lnkd.in/p/dx3ptwiS

It already has over 2000 views so likely reaching outside the bubble.
#mecfs #pwme #cfs
@mecfs

4/
Here is a link to the LinkedIn post on this, if anyone wants to like it/react to it; comment on it; and/or repost it:
https://lnkd.in/p/dx3ptwiS

It already has over 2000 views so likely reaching outside the bubble.
#mecfs #pwme #cfs
@mecfs

4/
Here is a link to the LinkedIn post on this, if anyone wants to like it/react to it; comment on it; and/or repost it:
https://lnkd.in/p/dx3ptwiS

It already has over 2000 views so likely reaching outside the bubble.
#mecfs #pwme #cfs
@mecfs

4/
Here is a link to the LinkedIn post on this, if anyone wants to like it/react to it; comment on it; and/or repost it:
https://lnkd.in/p/dx3ptwiS

It already has over 2000 views so likely reaching outside the bubble.
#mecfs #pwme #cfs
@mecfs

4/
Here is a link to the LinkedIn post on this, if anyone wants to like it/react to it; comment on it; and/or repost it:
https://lnkd.in/p/dx3ptwiS

It already has over 2000 views so likely reaching outside the bubble.
#mecfs #pwme #cfs
@mecfs

3/
The main re-analysis paper can be read for free here:
Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT
https://link.springer.com/article/10.1186/s40359-018-0218-3

#mecfs #cfs #pwme

@mecfs

3/
The main re-analysis paper can be read for free here:
Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT
https://link.springer.com/article/10.1186/s40359-018-0218-3

#mecfs #cfs #pwme

@mecfs

3/
The main re-analysis paper can be read for free here:
Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT
https://link.springer.com/article/10.1186/s40359-018-0218-3

#mecfs #cfs #pwme

@mecfs

3/
The main re-analysis paper can be read for free here:
Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT
https://link.springer.com/article/10.1186/s40359-018-0218-3

#mecfs #cfs #pwme

@mecfs

3/
The main re-analysis paper can be read for free here:
Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT
https://link.springer.com/article/10.1186/s40359-018-0218-3

#mecfs #cfs #pwme

@mecfs

4/

I see the paperback edition of this is now available.

#MEcfs #PwME

@mecfs

4/

I see the paperback edition of this is now available.

#MEcfs #PwME

@mecfs

4/

I see the paperback edition of this is now available.

#MEcfs #PwME

@mecfs

4/

I see the paperback edition of this is now available.

#MEcfs #PwME

@mecfs

4/

I see the paperback edition of this is now available.

#MEcfs #PwME

@mecfs

2026_4 Mystery GI Agony

I was fortunate to experience a nice family #BlueSunday2026 #TeaPartyForME2026 celebration yesterday in aid of the Irish ME/CFS Association @IrishMECFSAssociation

https://www.idonate.ie/fundraiser/BlueSunday2026fortheIrishMECFSAssociation

Thanks to my mum for all the work she put in organising it and to everyone who attended. 👍👏

#MEcfs #PwME #CFS #BlueSunday @mecfs

Thanks to my mum for getting everything ready for our family
#TeaPartyForME2026 on #BlueSunday2026 (on Sunday).

We’re doing it in aid of the Irish ME/CFS Association @IrishMECFSAssociation
https://www.idonate.ie/fundraiser/BlueSunday2026fortheIrishMECFSAssociation
but other worthy charities are available (see:
https://the-slow-lane.com/donation-pages )

#MEcfs #CFS #PwME #BlueSunday @mecfs

RE: https://disabled.social/@tomkindlon/116490561107527931

One week to go. #BlueSunday2026 #TeaPartyForME2026 #MEcfs #PwME @mecfs

From Anna Redshaw:

I'm getting there! Just a few more links to update for Blue Sunday 2026 and then everything will be ready.

https://www.the-slow-lane.com/donation-pages

#BlueSunday2026 #TeaPartyForME2026 #MEcfs #PwME #ME #MyalgicE
@mecfs

@IrishMECFSAssociation

For me the light backgrounds are easier to read, but I know that some people with ME/CFS and Long Covid can't read text on a white background.

So here are the same images (from the previous post) with dark backgrounds. (Alt text should be same as previous post)

@mecfs @longcovid

#DarkMode #MEcfs #PwME #LongCovid #PwLC #PostCovid #MedEd #ChronicIllness

Edit: Volunteers must register to get a link to Monday's kickoff session!

Register here:
https://docs.google.com/forms/d/e/1FAIpQLSdR4eWbC6OWn1LAFAJhFg_CFz2xOaLYTPzj6kjSDELhAu0fdg/viewform

🗣️ ME/CFS Advocacy Week starts on Monday, March 23

First Zoom call starts at noon Pacific, 3 pm Eastern (will be recorded)

More details in the participant toolkit, see links below.

Canva version:

https://www.canva.com/design/DAHDA3p0_NY/oTfLyW-lmGZIlbDdQfqmoA/view

PDF version:

https://solvecfs.org/wp-content/uploads/2026/03/Printable-Version-Advocacy-Week-2026-Participant-Toolkit-2.pdf

@mecfs
@longcovid

#USPol #MEcfs #PwME #LongCovid #PwLC #PostCovid #MedEd #ChronicIllness

2026_2_16 “Botox for Migraine” Injection Set #2, and 5 Hour Drive to/from Appt

https://www.illmarks.com/2026_2_16-botox-for-migraine-injection-set-2-and-5-hour-drive-to-from-appt/

#2 #art #bodyHorror #bodyMapping #bodyart #bodymapping #chronicIllness #chronicIllness #chronicmigraine #disability #disabilityart #DisabledArtist #eds #healthcare #heds #longCovid #longcovid #mcas #medart #medical #medicalArt #migraine #MillionsMissing #neurology #POTS #pwLC #pwme #queer #QueerArt #QueerArtist #SciArt #SciComms #trans #transArt #TransPride

Symptom: Social Security Disability Rejection

61% of Social Security applicants are denied after their first application. I am now on the second appeal, when 49% of remaining applicants are approved, and have hired a lawyer (disability lawyers are only paid if they win your case).

I set a new goal on ko-fi, in order to get more illmarks pieces into the world. The fundraising would cover framing two Med Art Advocacy pieces, and submission fees + professional scanning for the Mütter Medical Museum, a Senior Living Center, a Health Care Center & 3 other shows.

If you are able to comfortably, please buy me a ko-fi. We’re 1/3 of the way to the goal!

https://www.illmarks.com/symptom-social-security-disability-rejection/

#artmuseum #BetterFutures #bodyHorror #chronicIllness #chronicIllness #chronicPain #crowdfund #disability #disabilityart #disabilityJustice #FederalGovernment #kofi #longcovid #medicalArt #MillionsMissing #pwLC #pwme #redesignSystems #socialSecurity #SocialSecurityReform #SSI #systemsFailing #TransformativeFutures #UniversalBasicIncome #US #usa #ushealthcare