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@litsadremousis.bsky.socialOct 15, 2026, 6:05 PM

My fridge is stocked & I'm deeply grateful☀️

But I wish I could stand long enough to prepare meals.

I end up eating a lot of sandwiches and salads, apples and peanut butter, et al b/c they require zero prep.

It's been 35+ yrs & I still miss normalcy.

#MyalgicEncephalomyelitis #pwME

@tomkindlon.bsky.socialOct 15, 2026, 12:26 AM

Gut Microbiome and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Insights into Disease Mechanisms

pmc.ncbi.nlm.nih.gov/articles/PMC...

Screenshot from AMMES October 2026 newsletter

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Image of someone's lower torso with a gut outline with the following text Gut Microbiome and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Insights into Disease Mechanisms It is hypothesized that specific disturbances in gut microbiome composition, known as dysbiosis, may compromise the integrity of the intestinal barrier. This consequently leads to translocation of microbial components, which further triggers an immune response and systemic inflammation complicating the clinical presentation of ME/CFS. Furthermore, in terms of the so-called gut–brain axis, microbiome changes may lead to distinct neurocognitive impairments observed in ME/CFS patients. Read more here>>
@tomkindlon.bsky.socialOct 14, 2026, 9:03 PM

Given all talk re: Post Exertional Malaise/Post Exertional Symptom Exacerbation in #LongCovid:

Here is "Symptoms made worse due to physical or cognitive exertion" in #MyalgicEncephalomyelitis & #ChronicFatigueSyndrome

Also shows all the range of ME/#CFS symptoms

#MECFS
1/

Table 4. Symptoms made worse due to physical or cognitive exertion (N = 1534). % (n) "Yes" % (n) at "2" Threshold 99.4 (1525) 98.0 (1504) 98.9 (1517) 98.3 (1508) Items 1. Reduced stamina and/or functional capacity 2. Physical fatigue 3. Cognitive exhaustion 4. Problems thinking 5. Unrefreshing sleep 6. Muscle pain 7. Insomnia 8. Muscle weakness/instability 9. Temperature dysregulation 10. Flu-like symptoms 11. Aches all over your body 12. Physically fatigued while mentally wired 13. Dizziness 14. Gastro-intestinal problems 15. Headaches 16. Ataxia 17. Increased heart rate/heart palpitations 18. Weak or stiff neck 19. Joint pain 20. Problems with speech 21. Sore throats 22. Muscle twitching 23. Night sweats and chills 24. Sore eyes 25. Nerve pain 26. Sore lymph nodes 27. Nausea 28. Tinnitus 29. Trouble breathing 30. Neurological symptoms 31. Excessive sleep 32. Loss of appetite 33. Migraines 34. Cardiac pain and/or arrhythmia 35. Brain twangs 36. Severe burning sensation all over skin 37. Paralysis/inability to move 38. Premenstrual symptoms 39. Decreased heart rate Sav
@bennevis.bsky.socialOct 14, 2026, 11:29 AM

🕊️

#MEcfs is the #Hezbollah of Healthcare
#NHS #Medicare #GulfWarSyndrome #MyalgicEncephalomyelitis #LongCovid

substack.com/profile/9962...

@tomkindlon.bsky.socialOct 14, 2026, 12:25 AM

Recording of & notes for MassME: Sunday Conversations – September 2026 “Insights & Inspiration from Support Group Leaders”

Screenshot from @massmecfs.bsky.social Oct newsletter

youtu.be/1H8chnKirvw

massmecfs.org/events/sunda...

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Recording Available for September Sunday Conversations Massachusetts ME/CFS & FM Association Sunday Conversations Sunday, September 20, 2026 4:00-5:00pm ET REC Insights and Inspiration from Support Group Leaders The Power of Shared Experience WATCH NOW MassME Click Here for Meeting Resources and Links
@meactnet.bsky.socialOct 13, 2026, 6:25 PM

MEAction's next #caregiver support call is this Saturday - Oct. 17 at 1:30 pm ET.

We welcome caregivers of people w/ chronic diseases such as #MyalgicEncephalomyelitis (ME), #LongCOVID, #MCAS, etc!

To join the calls, please email [email protected] at we will get you set up!

Two hands (one set of hands is brown and the single hand they are clasping is deep brown) gently clasped together symbolizing support. Text: ME caregivers support call 3rd Saturday of the month 1:30 to 3:30 pm ET. For caregivers of people with myalgic encephalomyelitis (ME), Long COVID, and associated conditions. https://www.meaction.net/event-list
@meassociation.org.ukOct 13, 2026, 10:24 AM

What causes ME/CFS? poster

This poster, free to download, explores the different factors involved in causing ME/CFS based on current research: https://meassociation.org.uk/sdhw 

#MECFS #pwME #MyalgicEncephalomyelitis #MyalgicEncephalopathy

IMAGE DESCRIPTION: Photo of a person holding the MEA's 'What Causes ME/CFS?' Poster. Wording reads: 'What Causes ME/CFS?' Poster.
@thewestonmale.bsky.socialOct 13, 2026, 6:52 AM

@tessamunt.bsky.social is our wonderful chairman (chair? chairperson?) on the All Party Parliamentary Group on ME.
#APPGME #mecfs #me/cfs #MyalgicEncephalomyelitis (some prefer -opathy).

@tomkindlon.bsky.socialOct 12, 2026, 12:16 AM

Springer Nature Removes Description of "Fatigue" Patients as "Combative" and "Reproachful" - UPDATED by David Tuller

virology.ws/2026/10/10/t...

Screenshot from latest Science for ME weekly update

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Trial by Error by David Tuller Springer Nature Removes Description of "Fatigue" Patients as "Combative" and "Reproachful" - UPDATED A German paper on chronic fatigue syndrome published by Springer Nature contained derogative language about patients. This resulted into a joint statement with objection from many healthcare providers and scientists. It later turned out the characterisations had been added by a psychiatrist who was responsible editor of the project the paper was part of. Article l Thread
@tomkindlon.bsky.socialOct 12, 2026, 12:08 AM

Solve ME: Applications Open for 2026 Ramsay Research Grants

solvecfs.org/2026-ramsay-...

Screenshot from latest Science for ME weekly update

#MEcfs #LongCovid #PwME #CFS #MyalgicEncephalomyelitis @solveme.bsky.social

Solve ME Applications Open for 2026 Ramsay Research Grants The Ramsay Research Grant program "supports innovative, early-stage research aimed at advancing the biological understanding of infection-associated chronic conditions and illnesses (IACCIs), with a particular focus on ME/CFS and Long Covid." Applications accepted through Friday, Nov. 13. Article | Thread
@nlizaki.bsky.socialOct 11, 2026, 9:55 AM

From Nevra's drafts:

Young heart for love
Not heartache
Dark hair for catching the wind
Not to veil the sight of a cold world

gofundme.com/f/save-nevra
paypal.me/SaveLizNevra

#VerySevereME #MillionsMissing #DisabilityJusticeForGlobalSouth #MyalgicEncephalomyelitis

@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 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…
@tomkindlon.bsky.socialOct 10, 2026, 9:03 PM

2/

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.socialOct 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>>
@nlizaki.bsky.socialOct 9, 2026, 9:46 AM

1/3 Whose life is worth saving, and which parts of the world deserve advocacy?

Check out this video by @ horriblemeanbadwoman on Instagram and Tiktok

#MECFS #Disability #pwME #MyalgicEncephalomyelitis

@tomkindlon.bsky.socialOct 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. - Help process trauma: disbelief, dismissal, psychologisation, delayed diagnosis, medical gaslighting, coercion and previous harmful treatment can impact mental health. - 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.
@tomkindlon.bsky.socialOct 8, 2026, 7:05 PM

Hope to see a few of you at this. 👋

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

@irishmecfsassoc.bsky.socialOct 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

Informal ME/CFS social meet up in Dublin 2:30 PM-4 PM, Friday, October 23 The Bell Bar & Restaurant, Dublin 15, D15 EW77 https://www.thebell.ie All welcome incl. relatives & people with long Covid Buy your own food +/or drink Register for any updates (in case cancelled - hasn't happened so far): tomkindlon@irishmecfs.org Host: Tom Kindlon Irish ME/CFS Association for Information. Support & Research logo