explore | Grilled Cheese

@tomkindlon.bsky.social Oct 11, 2026, 1:08 PM

🧵
ME Research UK
As part of our Symptom Saturday series over the past 2 months,we’ve been exploring lived experiences relating to core symptoms of ME/CFS.For ease of access & sharing, we’ve collated & summarised the info.Follow link for full overview. tinyurl.com/MEcoresympto...
#mecfs #pwme #cfs
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What ME/CFS feels like core symptoms
11, Recurring themes from ME Research UK Symptom Saturday surveys
INFORM. INFLUENCE. INVEST. ateN - RESEARCH UK SCO36942

@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 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…

@mark-ungrin.bsky.social Oct 10, 2026, 11:21 PM

#longCOVID #ME #CFS

The ACCESS Lab (University of Ottawa) is seeking participants for a study that will bring authentic lived experience into the training of future health professionals.

Led by the Faculty of Medicine as part of course MED5114 (Diverse Perspectives in Biomedical Research and Healthcare Systems), this project is collecting narratives from individuals with lived experience of disability, chronic illness, neurodivergent conditions, or other health-related realities.

Who can take part?
• 18 years of age or older
• Able to communicate in French or English
• Lived or living experience of a disability, chronic illness, or a related condition

What's involved: a 45–90 minute interview (in person, by phone, or online), or another accessible format of your choice. Participation is entirely voluntary and confidential. Compensation is provided for your time and expertise.
To learn more or take part, contact us: Nadine.WiperBergeron@uottawa.ca
#UOttawa #Accessibility #HigherEducation #Disability #biomedicine

@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.

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

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

@paleblurs.bsky.social Oct 10, 2026, 1:45 PM

I just feel so tired and ill, all the time #ME #CFS

@rowdy.codes Oct 10, 2026, 8:39 AM

New #cfp added for enterJS in June 2027. More details at cfp.watch/cfps/2027-en.... #cfs #callforpapers #callforproposals #speakers #callforspeakers #publicspeaking #speakerlife

@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>>

@cfscounselling.bsky.social Oct 9, 2026, 9:00 PM

HOLIDAY AHEAD! We'll be closed Monday for the Thanksgiving holiday, but #CFS' programs and services are open today and re-open Tuesday! Our booking portal is always open at https://cfssc.ca/ #HopeLivesHere

@irishmecfsassoc.bsky.social Oct 9, 2026, 10:36 AM

We have given €54,000 from our research fund to the Solve ME/CFS Initiative over the years. #mecfs #pwme #cfs

@tomkindlon.bsky.social Oct 9, 2026, 12:19 AM

"The survey has identified multiple different ways that psychologists can potentially give that support & help people with ME/CFS"

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

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

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis

Welcome to the third British Psychological Society ME/CFS Guidelines update. We have been carrying out further analysis of the responses to our survey about what people with ME/CFS want psychologists to know to support both the guidelines and a planned research paper. Participants have said very clearly that the guidelines must recognise ME/CFS is a biological illness that cannot be cured by psychological methods. The role of psychology is support. The survey has identified multiple different ways that psychologists can potentially give that support and help people with ME/CFS:
•
Build trust: by believing people, listening compassionately, respecting lived expertise and taking limits seriously.
•
Support life with ME/CFS: including grief, identity change, loss of autonomy, loneliness, uncertainty, hope and changed relationships.
•
Support pacing: by helping people recognise limits, plan around exertion and reduce guilt, shame, self-blame or pressure to push through.
•
Adapt care: so psychological support is accessible, paced, flexible and appropriate for the person’s severity and energy limits.
•
Support mental health safely: by adapting work on anxiety, depression, trauma or other difficulties so ME/CFS symptoms are not misinterpreted.
•
Work with wider systems: including families, carers, schools, employers, healthcare, benefits, social care and voluntary-sector support to help support and educate others.
•
Reduce harm: challenge psychologization, coercion and patient blaming. Avoid minimising comments and inappropriate pressure to increase activity.
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Help process trauma: disbelief, dismissal, psychologisation, delayed diagnosis, medical gaslighting, coercion and previous harmful treatment can impact mental health.
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Signposting to resources: help with practical problem solving and system navigation, including benefits, social care, mobility aids, workplace adjustments, education, housing and finances where appropriate.

@cfscounselling.bsky.social Oct 8, 2026, 9:00 PM

#Thanksgiving is coming up and that means #CFS staff will be enjoying a long weekend. Our offices and all services will be closed on Monday, but you can still book your next counselling session online at https://cfssc.ca. Our programming will resume regular scheduling on Tuesday. #HopeLivesHere

@tomkindlon.bsky.social Oct 8, 2026, 7:05 PM

Hope to see a few of you at this. 👋

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid

@irishmecfsassoc.bsky.social Oct 8, 2026, 6:36 PM

Informal ME/CFS social meet-up in Dublin hosted by Tom Kindlon @tomkindlon.bsky.social on Friday, October 23

Hopefully we’ll see some of you there
irishmecfs.org/blog/friday-...

Carers/parents/similar welcome.

#MEcfs #LongCovid #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

@tomkindlon.bsky.social Oct 8, 2026, 3:34 PM

4/
Another extract that quotes me from "Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis" by @chloedecanson.bsky.social

#MEcfs #PwME #CFS #epatient #MyalgicEncephalomyelitis

Lay scientists do not merely criticise existing institutional research on the disease, but also produce their own. In this way, they produce not only extitutional, but also what they have called patient-led and what we might call more generally lay-led science (McCorkell et al., 2021). They produce, sometimes in collaboration with institutional scientists, new studies, review articles, opinion pieces, and conceptual-definitional groundwork, which they publish in scientific journals.30
I devoted considerable time and energy in writing a narrative review of the reporting of harms associated with graded exercise therapy and cognitive behaviour therapy in ME/CFS. This included collating data from patient surveys, data which generally had never been submitted to the peer-reviewed literature. I subsequently published other papers on the topic of the safety of graded activity therapies and harms reporting, along with reanalyses of the PACE Trial, a major UK trial which was designed to be the definitive assessment of CBT and graded exercise therapy for CFS. (Tom Kindlon)

@tomkindlon.bsky.social Oct 8, 2026, 2:45 PM

New from the US

searchMECFS: An Online, Interactive Platform to Facilitate Secondary Use of Biospecimens and Associated Research Data From Myalgic Encephalomyelitis Studies

doi.org/10.3768/rtip...

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Abstract
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex,
debilitating disease affecting multiple body systems, with no established biomarkers
for diagnosis or treatment. This publication introduces searchMECFS, a free, interactive
online platform developed by the Data Management and Coordinating Center of the
ME/CFS Research Network, with funding from the National Institutes of Health. The
platform’s purpose is to facilitate the secondary use of biospecimens and associated
research data from ME/CFS clinical studies by improving accessibility, visibility, and
sharing of these resources. Currently, searchMECFS facilitates access to biospecimens
and associated data from two studies: The Chronic Fatigue Initiative study, funded
by the Hutchins Family Foundation, and the Multi-Site Clinical Assessment of ME/
CFS study, funded by the Centers for Disease Control and Prevention. Users can query
participant demographics and clinical information and request available biospecimens
through an application process. Eight specimen types are currently available,
though availability varies by study. The results highlight a case where a researcher
used the searchMECFS platform to identify 40 serum samples, which contributed to
published research on circadian rhythm disruption in ME/CFS. searchMECFS aims to
accelerate scientific discovery within the ME/CFS research community by improving
biospecimen utilization, fostering data sharing, and supporting collaboration.