Irish ME/CFS Association

@irishmecfsassoc.bsky.social

Irish Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Association-for Information, Support & Research NB: Posts ≠ advice. Registered Charity RCN 20100254. #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME. Some #LongCovid items also

@alemmatthees.bsky.social Oct 10, 2026, 8:23 AMReposted by @irishmecfsassoc.bsky.social

(1/2) @mecfsscience.org wrote an interesting series of articles about the dark history of psychosomatic medicine including peptic ulcer, rheumatoid arthritis, heart disease, cancer, schizophrenia, autism, diabetes, epilepsy, asthma, and
multiple sclerosis. A worthy addition might be tuberculosis.

mecfsscience.orgAll blog posts in the category psychosomatic medicine - ME/CFS ScienceAll blog posts in the category ‘Psychosomatic Medicine’ can be found here. Read about the influence of psychosomatic medicine on the illness ME/CFS.

@meactnet.bsky.social Oct 5, 2026, 4:00 PMReposted by @irishmecfsassoc.bsky.social

We are thrilled to bring you 2 new webinars from Denise Lopez- Majano & Kim Moy. "Things We Caregivers Wish We Had Known" w/ Denise on Nov. 1 at 3pm ET. “Being on the Same Team: Strengthening Relationships Through Chronic Illness” w/ Kim on Nov. 15 at 3 pm ET. Registration coming soon!

Two free caregiving webinars on November 1 and 15 at 3 PM ET for National Family Caregivers Month. Dark brown background with cream accents. Text: November 1st 3 pm Et "Things We Caregivers Wish We Had Known" roundtable discussion facilitated by Denise Lopez-Majano “Being on the Same Team: Strengthening Relationships Through Chronic Illness” with Kim Moy of Caregiver Wisdom. November 15 3 pm Et

@meactnet.bsky.social Oct 1, 2026, 5:50 PMReposted by @irishmecfsassoc.bsky.social

We're excited to bring you a new art workshop on Oct. 29 at 12 PM EST. We have a Halloween theme to celebrate spooky season! One of our wonderful volunteers & #pwME, Orion Romero, will host. https://ow.ly/2zFU50ZTl4T
All you need is pencil, paper & way to join online!

#art #spoonie #MECFS

@mecfssd.bsky.social Oct 10, 2026, 2:57 AMReposted by @irishmecfsassoc.bsky.social

PRIME ME/CFS Neurology Webinar: Researchers discuss brain & nervous system findings, imaging and potential implications for diagnosis & treatment. 10/28, 2–5 pm GMT. Register: us02web.zoom.us/webinar/regi...

@mecfssd.bsky.social Oct 10, 2026, 2:52 AMReposted by @irishmecfsassoc.bsky.social

@davetuller1.bsky.social interviews George Monbiot: about investigation of patient mistreatment, medical dismissal, outdated treatment approaches, & failure to translate scientific progress into better care. www.youtube.com/watch?v=Maae...

@mecfssd.bsky.social Oct 8, 2026, 11:11 PMReposted by @irishmecfsassoc.bsky.social

Amsterdam Long COVID Conference: Mechanistic trials and biology; ME was discussed on its own and as an LC phenotype. New $8M DoD program. thesicktimes.org/2026/10/06/b...

@mecfssd.bsky.social Oct 8, 2026, 11:04 PMReposted by @irishmecfsassoc.bsky.social

@mecfsclinicmn.bsky.social 2027 Virtual Conference: Jan/21-22/27, free for disabled medical professionals working <10 hours/week. A chance for clinicians and therapists to learn ME/CFS diagnosis and treatment; Dr. Tam plans to retire by 2032. www.mecfsclinicmn.org/conference

@mecfssd.bsky.social Oct 8, 2026, 2:14 AMReposted by @irishmecfsassoc.bsky.social

@solveme.bsky.social Ramsay Research Grants: Applications open for ME/CFS research grants: $50K PhD, up to $100K postdoc/new or returning faculty, and up to $150K collaborative awards. Deadline Nov. 13, 2026. solvecfs.org/research/ram...

@mecfssd.bsky.social Oct 5, 2026, 10:37 PMReposted by @irishmecfsassoc.bsky.social

"Patient Knowledge, Doctor Ignorance": argues patients can develop more scientifically informed knowledge of ME/CFS than doctors because medical systems fail to produce & transmit that knowledge. www.sciencedirect.com/science/arti...

@davetuller1.bsky.social Oct 10, 2026, 6:16 PMReposted by @irishmecfsassoc.bsky.social

WTF, Springer Nature? Removing offensive language about patients being "combative" and "reproachful" is not enough. You need to explain why the language was there in the first place. virology.ws/2026/10/10/t...

virology.wsTrial By Error: Springer Nature Removes Description of "Fatigue" Patients as "Combative" and "Reproachful" | Virology BlogBy David Tuller, DrPH A month after publishing a German-language article about chronic fatigue syndrome as part of a larger project, Springer Nature has rem ...

@tomkindlon.bsky.social Oct 10, 2026, 11:38 PMReposted by @irishmecfsassoc.bsky.social

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 PMReposted by @irishmecfsassoc.bsky.social

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.

@tomkindlon.bsky.social Oct 11, 2026, 12:13 AMReposted by @irishmecfsassoc.bsky.social

"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 11, 2026, 12:20 AMReposted by @irishmecfsassoc.bsky.social

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, 12:26 AMReposted by @irishmecfsassoc.bsky.social

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>>

@medidier.bsky.social Oct 11, 2026, 5:58 AMReposted by @irishmecfsassoc.bsky.social

Yep. A classic. I think we have known this for at least 5 years? (And any patient since day 1 of getting sick and moving into the toilet).

@emilyesfraser.bsky.social Oct 9, 2026, 1:05 AMReposted by @irishmecfsassoc.bsky.social

Required reading for doctors, journalists, & anyone who cares about anyone w/ ME or Long Covid ⬇️

Includes excellent history of #GreatestMEdicalScandal & how the ignorance of doctors re #MECFS is continually renewed through informal (mis)training + biased media

www.sciencedirect.com/science/arti...

@tomkindlon.bsky.social Oct 10, 2026, 2:09 AMReposted by @irishmecfsassoc.bsky.social

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>>

@sonic25.bsky.social Oct 10, 2026, 3:35 AMReposted by @irishmecfsassoc.bsky.social

I'd add that the "therapies" we were prescribed actively harmed us, and made many of us permanently worse, a clear violation of the Hippocratic Oath.

@abrokenbattery.bsky.social Oct 8, 2026, 9:23 AMReposted by @irishmecfsassoc.bsky.social

Kieran developed severe ME at 13 after glandular fever. He spent years bedbound, and unable to speak. Now 23, he’s working full-time. When asked how he improved, he said it was care from his family, advice from the ME community and possibly a bit of luck. #MECFS

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