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@camillebuckner.bsky.socialOct 11, 2026, 11:43 AM

More of this, please.

#MedSky #MECFS

@camillebuckner.bsky.socialOct 11, 2026, 11:38 AM

#LongCovid #MECFS #MEAwareness #MillionsMissing ❤️‍🩹💔❤️‍🩹

@abrokenbattery.bsky.socialOct 11, 2026, 11:32 AM

The worsening of symptoms after minimal activity is called Post-exertional malaise, and is a hallmark feature of #MECFS. In some cases it can lead to a relapse and a long term reduction in a person's energy limits.

Definition from the NICE guideline NG206

Definition from the NICE guideline NG206
@abrokenbattery.bsky.socialOct 11, 2026, 11:31 AM

“I can’t even get dressed by myself anymore or press buttons or things like that.”

9 year old Annabelle describes the impact of #MECFS which she developed following Covid, and how exertion can make her symptoms worse. #LongCovid

@erinmarilee.bsky.socialOct 11, 2026, 11:21 AM

It’s officially #BigSitToCureME time! I am in my circle, a cup of brewed cacao in hand, waiting for sunrise in half an hour.

Confession: I’ve been birding almost 2 years but I’ve never birded at sunrise because my #MECFS symptoms are at their worst in the morning. Excited for my first dawn chorus!

@lyssinum.bsky.socialOct 11, 2026, 10:07 AM

Einer meiner unerfüllbaren Träume ist, mal in den Giftgarten zu kommen. Leider werde ich wohl nur darüber lesen.😢
#MEcfs
www.reisereporter.de/reiseziele/e...

@rippermd41.bsky.socialOct 11, 2026, 7:34 AM

May 2023 my #MECFS worsened and I became housebound and 95-97% bedbound.

In the past 3 years I left the house 9 times, all for in-person doctors’ appts.

Every excursion triggered post-exertional malaise (PEM).

A few caused a drop in my baseline.

And yet…

@fwm.bsky.socialOct 11, 2026, 7:03 AM

Wir sind eine der Familien mit Jugendlichen mit #mecfs , bei denen das Jugendamt eine sehr problematische Rolle gespielt hat. Wir konnten größeren Schaden aber verhindern. "Bei Ihnen mussten wir schnell kommen, denn Sie wohnen in [Stadtteil]" war nur eines der Lowlights.

@dioneira.bsky.socialOct 11, 2026, 6:52 AM

Liege im Bett, fühle mich wie aus Blei und frage mich "Wie geht noch mal aufstehen?"🫠 #MECFS

@neurostingl.bsky.socialOct 11, 2026, 5:34 AM

Das @bmasgpkaut.bsky.social lädt für eine #MECFS Gutachterschulung einen nicht-ME/CFS-Experten einer Institution ein, die für ihre ME/CFS-Gutachten in der Kritik steht.

Die 2 größten ME/CFS-Expertinnen in 🇦🇹 (NRZ, EU Horizons Grant, etc): nicht dabei.

Das BMASGPK finanziert das NRZ.

Absurd.

@erinmarilee.bsky.socialOct 11, 2026, 2:57 AM

Tomorrow (Sunday) is The Big Sit! Our family will spend the day in a 17ft circle trying to find as many birds as possible to raise funds for #MECFS research. We’re inviting people to donate $1 per bird we (or you) find to @openmedf.bsky.social

openmedicinefoundation.crowdchange.co/61233?utm_so...

@mari-19.bsky.socialOct 11, 2026, 2:09 AM

en.wikipedia.org/wiki/Myalgic...
Due to #MECFS I got up at 2.40 am German time yet, showered, washed & blow-dried my hair.
BP 122/72, body temperature 35,8°F/96,4°F, outside it cooled down to 11,5°C/52,7°F in the SW by about 4.10 am.
Happy furry early #Sunday #Sunntig #Sonntag #Dimanche.
💖💖💖

@neuroautoimmunity.bsky.socialOct 11, 2026, 2:04 AM

🧠 Excited to be speaking at the 4th PRIME Webinar: The Neurology of #MECFS!

Join us to explore emerging research on neurological mechanisms in ME/CFS and opportunities for better treatments.

📅 October 28 | 2–5 PM GMT
🔗 Register: us02web.zoom.us/webinar/regi...

#Neuroimmunology #Science

@thorsten-runge.bsky.socialOct 11, 2026, 12:58 AM

02:58 Uhr – Frühstück. #sekundaererKrankheitsgewinn

So, dann mal Frühstück.

Die Tiger haben mich ein paar Stunden früher geweckt als geplant.

#NON24
#MECFS

@bigpolarbear.bsky.socialOct 11, 2026, 12:35 AM

今日は花をお届けします😃

筋痛性脳脊髄炎が広く周知され、治療法が見つかりますように。

#ブルーフォトチャレンジ
#筋痛性脳脊髄炎
#笑顔の花びら集めたい
#5月12日
#mecfs
#bluephotochallenge

@tomkindlon.bsky.socialOct 11, 2026, 12:26 AM

Low Vasopressin in Myalgic Encephalomyelitise/Chronic Fatigue Syndrome

Vasopressin is also known as antidiuretic hormone

www.endocrinepractice.org/article/S153...

Screenshot from AMMES October 2026 newsletter

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Photo of someone lying, collapsed on sand looking exhausted With the following text LOW VASOPRESSIN IN MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME In a consecutive series of ME-CFS patients, majority had very low vasopressin levels, relatively high plasma osmolality and low urine osmolality, in absence of overt hypothalamic or hypophyseal pathology. Chronic down-regulation of vasopressin mimicking central diabetes insipidus may contribute to the core symptoms of ME/CFS. Read more here>>
@tomkindlon.bsky.socialOct 11, 2026, 12:20 AM

Does Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Represent a Poly-Herpesvirus Post-Virus Infectious Disease?

www.mdpi.com/1999-4915/17...

Screenshot from AMMES October 2026 newsletter

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Image of a virus with the following text Does Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Represent a Poly-Herpesvirus Post-Virus Infectious Disease? In over half of cases, ME/CFS onset is associated with acute “flu-like” symptoms, suggesting a role for viruses. However, no single virus has been identified as the only etiological agent. This may reflect the approach employed or more strongly the central dogma associated with herpesviruses replication, which states that a herpesvirus exists in two states, either lytic or latent. The purpose of this review is to address the role that abortive lytic replication may have in the pathogenesis of ME/CFS and other post-acute viral infections and also to raise awareness that these syndromes might be poly-herpesviruses mediated diseases. Read more here>>
@tomkindlon.bsky.socialOct 11, 2026, 12:13 AM

"Liaison psychiatry" by K. Johnstone
@kjohnstone.bsky.social

mecfs.substack.com/p/liaison-ps...

Screenshot from AMMES October 2026 newsletter

#MEcfs #chronicillness #hiddenillness #invisibleillness #PwME

Photo of Sigmund Freud with the following text Liaison psychiatry All medical gaslighting is potentially harmful, but the gaslighting that occurs in hospital can be the most damaging, since it happens at a time when the patient is particularly vulnerable. I’ve learned that hospitals employ psychiatrists whose specific job (or a large part of it) is to say that biomedical illness is, in fact, psychosomatic. They’re called “liaison psychiatrists” in the UK, and “consultation-liaison psychiatrists” in the US. Read more here>>
@tomkindlon.bsky.socialOct 10, 2026, 11:38 PM

3/

A screenshot of most of page 2 from British Psychological Society ME/CFS Guidelines (September 2026 Update)

meassociation.org.uk/wp-content/u...

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis @drjogreer.bsky.social

Last time, we introduced you to some of the team working on the guidelines. Dr Jo Greer is a Chartered Educational Psychologist and another of our amazing volunteers. She is also a carer for her daughter, who has very severe ME. Here Jo shares her experience: Following COVID Pneumonia in 2021, my teenage daughter (previously fit and well) suddenly became very ill. She has a diagnosis of very severe ME and is one of the estimated 25% of people with ME/CFS who are categorised as ‘severe’ or ‘very severe’. Her dad and I are currently her full-time carers. Despite my professional background and experience of multi-disciplinary working, nothing had prepared me for trying to secure support as a parent for my own daughter who was suddenly so unwell and yet faced a system with no treatments, no pathway, and a dangerous lack of awareness of ME/CFS among professionals. I soon learned that our experience as a family was far from unique. In 2024 I launched The Red Tree and ME: www.theredtreeandme.com. It brings together lived experience and artistic expression to raise awareness and support for the research led by Professor Chris Ponting at the University of Edinburgh, which ultimately aims to find effective treatments and a cure. As an Educational Psychologist with lived experience as a carer for a young person with very severe ME, I know I have a somewhat unique vantage point. I was really pleased to be invited to join the writing group for the British Psychological Society ME/CFS Guidelines for Psychologists, especially contributing to sections relating to children and young people. For too long, people with ME/CFS have faced misunderstanding and minimisation. Misinterpretation of physical symptoms has often led to inappropriate treatments, pressure to increase activity, and physical and emotional harm. Clear, evidence informed guidelines for professionals will help prevent this. I believe the ME/CFS Guidelines for Psychologists are an important step towards creating meaning…