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@mecvsvereniging.bsky.social Oct 11, 2026, 10:00 AM

𝗕𝗲𝗴𝗿𝗶𝗷𝗽 𝗷𝗲 𝗺𝗲?
𝗚𝗲𝗹𝘂𝗶𝗱 𝗲𝗻 𝗹𝗮𝘄𝗮𝗮𝗶, 𝗹𝗶𝗰𝗵𝘁 𝗲𝗻 𝗽𝗿𝗶𝗸𝗸𝗲𝗹𝘀 𝗸𝘂𝗻𝗻𝗲𝗻 𝗼𝘃𝗲𝗿𝘄𝗲𝗹𝗱𝗶𝗴𝗲𝗻𝗱 𝘇𝗶𝗷𝗻

Bij ME/cvs kunnen prikkels zoals geluid, fel licht en drukke omgevingen veel

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

@tomkindlon.bsky.social Oct 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.social Oct 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.social Oct 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.social Oct 10, 2026, 11:38 PM

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…

@tomkindlon.bsky.social Oct 10, 2026, 9:03 PM

Extract from British Psychological Society ME/CFS Guidelines (September 2026 Update)

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

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis

Psychology won’t help everyone Not everyone with ME/CFS will benefit from seeing a psychologist. Some people do not need psychological support, already have support, want or need to prioritise practical or medical help, or are not well enough to participate in therapy. For some, therapy itself can worsen symptoms because of the physical exertion of attending, the cognitive effort of talking and processing information, or the emotional exertion of discussing difficult experiences.

@mefoggydog.bsky.social Oct 10, 2026, 7:08 PM

Wear your PJs.
Share a post.
Start a conversation.
Join #BEDforSevereME on 29 Oct and help make the rarely seen visible. 💙

More info - www.mefoggydog.org/bed-for-seve...

#pwME #Awareness #SevereME

@laurajmg.bsky.social Oct 10, 2026, 5:33 PM

A post about me and my ME. #ME #pwME #CFS #MEcfs #MillionsMissing

@laurajmg.bsky.social Oct 10, 2026, 5:30 PM

Here goes nuthin'… sending this into the wild with extra love for my fellow #pwME. May your pillow be soft and your recovery be swift.

@laurajmg.bsky.social Oct 10, 2026, 5:30 PM

I need to stop. Here's a quick to-do list, if you want to help.
1. Spread survivors' stories. Listen and learn. Check out hashtags like #pwme #MEcfs #ME #LongCovid for patients' stories and medical updates.

@me-with-me.bsky.social Oct 10, 2026, 4:47 PM

Going to trial a new strategy with my #LDN starting tomorrow. Since I can’t get above 2.5mg without the return of extreme insomnia, I’m going to try 2mg at night & 2 in the morning. Hopefully this might help with the after lunch crash. Probably not, but ya don’t know if ya don’t try. #pwME

@stpaulsbay.bsky.social Oct 10, 2026, 3:45 PM

#PAIS #LongCovid #Millionsmissing #ChronicIllness #Spoonie #pwME #NEISVoid

@stpaulsbay.bsky.social Oct 10, 2026, 3:05 PM

Millions of #pwME will spend this weekend trapped in a body weighed down with exhaustion. They are victims of a medical system that is blind to intracellular biophysics.
#MECFS #rs5522 #NEISVOID

@apainprincess.bsky.social Oct 10, 2026, 2:23 PM

“It’s not fair to have the same expectations from us as you would from a perfectly healthy person. This is a never-ending struggle! Most people tend to forget that #ChronicIllness is something you have to deal with every day of your life.” https://buff.ly/47uYP2O #Fibromyalgia #pwME #ChronicPain

@litsadremousis.bsky.social Oct 10, 2026, 3:12 AM

Thanks, everyone! 😎

So far, in four days, I’ve made more $ for my debut Substack essay than I did for any of my WaPo essays, and WaPo paid freelancers a competitive rate.

And I just got asked to guest host a guest pod.

Good week personally🎉

Wish it were good for everyone.

#WriterSky #pwME

@tomkindlon.bsky.social Oct 10, 2026, 2:09 AM

Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed

www.theguardian.com/commentisfre...

Screenshot from AMMES October 2026 newsletter

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Photo of someone looking pensive with the following text
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed
I’ve spent my working life covering neglected issues. But few are neglected like the devastating chronic condition ME/CFS (myalgic encephalomyelitis, or chronic fatigue syndrome). In severe cases, the illness shuts down people’s lives almost entirely, causing an extreme loss of energy and a wide range of physical and cognitive symptoms that can prevent patients from working, socialising and, sometimes, even moving or eating. Yet these people have been more or less airbrushed from our minds.
Read more here>>

@minetodo.bsky.social Oct 9, 2026, 9:17 PM

Timely help is so urgently needed! 🙏
As you are able, please give to this new Friends of Cynthia Johnson Fall 2026 GoFundMe.
Thank you for your kindness, compassion and help. 💛
#StandByMEcfs #pwME #StillSickStillFighting since 2009
gofund.me/edb78da50 #MEcfs