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@meassociation.org.uk Sep 14, 2026, 10:06 AM

The MEA had the privilege of attending a reception for the B12 consortium at Parliament at the invite of the Pernicious Anaemia Society.

#MECFS #pwME #LongCovid #B12

@marushka-t.bsky.social Sep 14, 2026, 12:43 AM

Today has a theme, namely the ableist discrediting of chronically ill people by those claiming the illnesses aren't real. I've come across (and reposted here) 3 articles in a row that address this. Guess the digital universe has a message to share. Please spread it around. #disability #PwME #COVID

@tomkindlon.bsky.social Sep 14, 2026, 12:18 AM

The Hidden Hierarchy of Illness

journals.sagepub.com/doi/full/10....

Screenshot from September AMMES newsletter

#MEcfs #PwME #CFS #ME #MyalgicE

Photo of a man with his head in his hand with the following text

The Hidden Hierarchy of Illness
"As a rehabilitation physician working closely with patients with long-standing ME/CFS and functional disorders, I have repeatedly been struck by a paradox that is difficult to forget. Several patients whom I had followed for years, disabled by profound fatigue, cognitive dysfunction, and loss of function, were later found to have incidental MRI findings that supported a diagnosis of multiple sclerosis. Each time, I expected devastation. Instead, more than one patient told me that the day they were given the diagnosis of MS was ‘the best day of my life’. Not because their suffering had changed, but because, for the first time, it had become legitimate. They were no longer exhausted without cause, disabled without explanation, or ill without status. They had crossed an invisible threshold from a condition that required justification into one that commanded recognition."
Read more here>>

@tomkindlon.bsky.social Sep 14, 2026, 12:13 AM

Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS”

virology.ws/2026/03/13/t...

Screenshot from September AMMES newsletter

#MEcfs #PwME #CFS #ME #MyalgicE

Image of somebody looking out over a long pier into an area of water

Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS”
The Norwegian ME Association recently posted an account by Schei of a hearing involving a young man’s effort to obtain disability benefits. The account makes for troubling reading. As Schei notes, “the case provided frightening perspectives on Nav’s view of ME”—specifically, that “the prognosis for ME was good, and that recovery from ME was about faith and hope and motivation.” Given that, any failure to get better can be interpreted as the patient’s fault.
Read more here>>

@s4me.info Sep 13, 2026, 8:25 PM

Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of Sept. 7 - 13.

s4me.info/threads/news...

#MEcfs #PwME #LongCovid #PwLC

@mecvsvereniging.bsky.social Sep 13, 2026, 10:02 AM

3️⃣ 𝗠𝗲𝗲𝗿 𝗯𝗲𝗴𝗿𝗶𝗽 𝗯𝗲𝗴𝗶𝗻𝘁 𝗺𝗲𝘁 𝗸𝗲𝗻𝗻𝗶𝘀.

Meer informatie over ME/cvs vind je op onze website:

me-cvsvereniging.nl

#mecvs #pwme #me #mecvsvereniging #contact #erkenning

@mecvsvereniging.bsky.social Sep 13, 2026, 10:01 AM

𝗕𝗲𝗴𝗿𝗶𝗷𝗽 𝗷𝗲 𝗠𝗘?
𝗢𝗼𝗸 𝗸𝗹𝗲𝗶𝗻𝗲 𝘃𝗲𝗿𝗮𝗻𝗱𝗲𝗿𝗶𝗻𝗴𝗲𝗻 𝘁𝗲𝗻 𝗴𝗼𝗲𝗱𝗲 𝗱𝗼𝗲𝗻 𝗲𝗿 𝘁𝗼𝗲

Bij ME/cvs gaat herstel niet altijd in grote stappen. Een klein beetje minder pijn,

#mecvs #pwme #me #mecvsvereniging #contact #erkenning

@ahimsa-pdx.bsky.social Sep 13, 2026, 3:35 AM

I forgot to add hashtags

#MEcfs #PwME

@achronicvoice.com Sep 13, 2026, 1:30 AM

"The prob with #LongCOVID is that most of #society would rather not see it. We want to believe the #pandemic was jz a bad dream we awoke from years ago. (When I hear some1 say during #COVID, in the past tense, I want to flip a table.)": buff.ly/5ouZUwT

via @thesicktimes.org
#LongHauler #pwME

@achronicvoice.com Sep 12, 2026, 9:30 PM

" @lisaalioto shares how her initial skepticism..about using a #gratitude #journal which turned into #appreciation, when she saw the #positive changes it made in her life. If u have trouble forming new #habits, there r some nifty tips here as well.": buff.ly/2JG8FBV

#ChronicIllness #pwME #spoonie

The Value in Seeking Out Moments of Gratitude (and How to do it). Gust Post by: Lisa Alioto. Read the post on: A Chronic Voice .com

@tomkindlon.bsky.social Sep 12, 2026, 7:59 PM

Polly Patterson - Supporting Clients Through Medical Gaslighting

chroniclivingtherapy.com/supporting-c...

Screenshot from latest edition of Chronic Living Therapy @chronicliving123.bsky.social email bulletin

#MedicalGaslighting #MEcfs #PwME #LongCovid #chronicillness @lammasleaves.bsky.social

Polly Patterson - Supporting Clients Through Medical Gaslighting
Author and advocate, Polly Patterson, has contributed a deep dive article about gaslighting from her perspective as a patient.

The first of two pieces, this explores how gaslighting comes about, how it makes patients feel and how it impacts their ability to access care.

She offers advice for therapists working with patients who have gone through this. Her next article will focus on how therapists can support clients through the process of advocating for themselves when challenging gaslighting.

Polly Patterson on Supporting Clients Through Medical Gaslighting

Photo of Polly Patterson

@anilvanderzee.bsky.social Sep 12, 2026, 5:58 PM

Mijn reactie op een uit de duim gezogen stressmodel voor "CVS" in Medisch Contact.

www.linkedin.com/posts/anilva...

#pwme #myalgicE #millionsmissing #severeME #MEcvs

@tomkindlon.bsky.social Sep 12, 2026, 3:57 PM

Therapy via Messaging

chroniclivingtherapy.com/insights-tex...

Screenshot from latest edition of the Chronic Living Therapy @chronicliving123.bsky.social email bulletin

#MEcfs #Spoonies #PwME #Spoonie #SevereME @lammasleaves.bsky.social

Therapy via Messaging
Severe and Very Severe patients with ME/CFS often experience huge cognitive issues, as well as photophobia and other sensory impairments. This can make using screens for hour-long video therapy sessions impossible.

Using the written word for therapy provides a way to support some patients who are experiencing quite extreme health difficulties. Where appropriate, this can give people access to support they badly need but can access no other way.

Pamela Phillips, one of our therapists (see above), has trained in delivering therapy via Messaging and writes about her experience, sharing her reflections and some key tips.

Read Insights into Text-based therapy

Image of somebody holding their mobile phone

@swastrosarah.bsky.social Sep 12, 2026, 1:47 PM

The @meassociation.org.uk agreed with this analysis, having played a part of the National Task Force in 1994 (the year Maeve was conceived).
This can only have happened because #pwME were not represented. #PEM is not fatigue. This was known and ignored.

@chembarathi.northsky.social Sep 12, 2026, 12:24 PM

Yesterday I read a quote about the cruelty of criticising the way someone swims when they are drowning. It made sense then why I have been feeling crushed after having that call. #pwme #mecfs

@gvnett.bsky.social Sep 12, 2026, 12:23 AM

From one chronic to another. If it’s at all possible today, be kind to yourself. #PwME #mecfs

@tomkindlon.bsky.social Sep 11, 2026, 7:41 PM

Media gaslighting = patient harm

chroniclivingtherapy.com/brain-retrai...

Screenshot from latest edition of the Chronic Living Therapy @chronicliving123.bsky.social email bulletin

#MEcfs #PwME #LongCovid #CFS #chronicillness @lammasleaves.bsky.social

Photo of someone looking confused with the following text

Media gaslighting = patient harm
Recently the i newspaper in the UK published a gushing article about a not-yet-even-published piece of non-medical academic research into 75 people who 'recovered' from 'CFS' with various 'brain retraining' programmes. (Sorry about all the 'speech marks' but there's no other way to write about it...)

The research has been challenged from several well-informed quarters already. It made me think of the harm that is done to patients when we and our families and friends read such publicity. I saw some other patients on social media commenting and reached out.

Kirsty, a patient who has had ME/CFS since the 1990sl, responded by writing about how reading such articles has affected her and those around her.

Read 'Brain Retraining Merry-go-round'

@tomkindlon.bsky.social Sep 11, 2026, 4:59 PM

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

3-page document, one of a number of potentially useful files available here:
suffolkfed.org.uk/healthcare-s...

This service development used a lot of patient input

#MEcfs #LongCovid #PwME