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@granejane.bsky.socialOct 16, 2026, 6:35 PM

#MEcfs #ME #MyalgicEncephalomyelitis

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@celiaka.bsky.socialOct 16, 2026, 1:46 PM

Tremendous gratitude to Beth Dobbin for speaking out about this horrific disease and risking her health to do so. I hope the inevitable PEM episode caused by doing this interview passes with no permeant damage. #myalgicencephalomyelitis #mecfs #neisVoid
www.bbc.co.uk/sport/athlet...

@cecillus.bsky.socialOct 16, 2026, 12:28 PM

To all my shit doctors who think I'm a hypochondriac, lazy, depressed, menopausal, faking it...

#ME #myalgicencephalomyelitis

www.bbc.com/sport/athlet...

@maryeilmicdom.bsky.socialOct 16, 2026, 8:16 AM

I'm so sorry to welcome Beth to the Living Death Club.

We wrote a book for doctors.

#MECFS
#MyalgicEncephalomyelitis

amzn.eu/d/02PTv5ZE

CCarole Bruce@cabruce.bsky.socialOct 16, 2026, 7:20 AM

"There is nothing out there. There is nowhere to go. You go to the GP and there's nowhere for them to send you to. It's really at the back of the queue as far as research, knowledge, expertise, funding." The Olympic sprinter now bedbound for 22 hours a day with #ME www.bbc.co.uk/sport/athlet...

bbc.co.ukBeth Dobbin: British Olympic sprinter in bed for 22 hours a day after ME diagnosisBeth Dobbin ran for Great Britain at the Tokyo Olympics in 2021. Five years on, she is largely bedbound after being diagnosed with ME, a devastating illness for which there is no cure.
@thewestonmale.bsky.socialOct 16, 2026, 7:44 AM

Beth Dobbin, aged 32: "I've done little things like attend a blood test at the doctors and been in bed for months after. So doing this interview, chatting away for 30 minutes, that could have an impact on me in 2027.'
#Olympian #mecfs #me/cfs #MyalgicEncephalomyelitis #BethDobbin #Doncaster

@thewestonmale.bsky.socialOct 16, 2026, 7:44 AM

@katiefalkingham.bsky.social
Five years ago, she ran for Great Britain at the Tokyo Olympics. Now, at 32, she spends more than 22 hours a day in bed | BBC Sport | 16 October 2026:
www.bbc.co.uk/sport/athlet...
#Olympian #mecfs #me/cfs #MyalgicEncephalomyelitis #BethDobbin #Doncaster

@tomkindlon.bsky.socialOct 16, 2026, 12:59 AM

"My Reasonable Adjustment for Work and Education Plan: Guidance for Employers / Tutors" (5 pages)

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

#MEcfs #LongCovid #PwME #CFS #MyalgicEncephalomyelitis

1/

My Reasonable Adjustment for Work and Education Plan Guidance for Employers / Tutors 1. A Guide to the Reasonable Adjustment for Work and Education Plan This Reasonable Adjustment for Work and Education Plan is a personalised, practical tool designed to foster a supportive and productive partnership between an individual managing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or Long Covid, and their employer or educational institution. This document aims to facilitate open, constructive dialogue about what helps the individual stay well, what might cause their symptoms to worsen, and what support can be put in place to enable them to thrive. The purpose of this plan is not to present a list of demands, but to create a shared understanding. It is a proactive tool that empowers the individual to articulate their needs and self-management strategies, while enabling managers, HR representatives, and educators to provide effective, reasonable support. By working together, it is possible to create an environment where a valued employee or student can continue to contribute their unique skills and talents, maintaining both their wellbeing and their productivity. It is crucial to recognize that ME/CFS and Long Covid are fluctuating diseases. An individual's capacity and support needs can change from day to day or week to week. Therefore, this reasonable adjustment plan should be treated as a living document. It provides a solid foundation for an initial conversation and agreement, but it should be reviewed regularly—for example, on a quarterly basis—to ensure it remains relevant and continues to meet the needs of both the individual and the organisation. Finally, this plan is a personal and confidential document. The individual who completes it owns the information within. It should only be shared with their express permission and handled with the same level of confidentiality as any other sensitive health information, such as an Occ…
@tomkindlon.bsky.socialOct 16, 2026, 12:32 AM

"The medical establishment is not merely passively neglectful toward people with ME/CFS. It is actively vindictive: A medical textbook doubles down on misinformation and stigma" by K. Johnstone

mecfs.substack.com/p/the-medica...

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

The medical establishment is not merely passively neglectful toward people with ME/CFS. It is actively vindictive. A medical textbook doubles down on misinformation and stigma K. Johnstone Oct 09, 2026 An important and widely used medical textbook, Kumar and Clark’s Clinical Medicine has been repeatedly criticized for presenting out-dated and harmful misinformation about ME/CFS. There was a petition asking for the textbook to be updated. Now the new version is out - and it’s worse than ever. ME/CFS is wrongly presented as a psychological illness. Patients living with severe chronic illness are slandered as delusional people who merely ‘believe’ that they are physically ill. The ‘information’ about ME/CFS in the textbook is at this point so far from the current medical and scientific consensus that it can no longer be viewed as merely biased or unbalanced. It’s worse than that. It is prejudiced, malicious, and hateful. The choice to include this misinformation constitutes a deliberate act of harm toward people with ME/CFS. It is slander toward an entire group of seriously ill patients, and I look forward to the day when those responsible are held to account.
@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>>