3/
“(Contd) So when something feels harder to name or hold, it’s often not about the reality of the symptoms, but about the way we see them”
#chronicillnesssupport #invisibleillness #spooniesupport #occupationaltherapy
Tom: Doesn’t reference ME/CFS or Long Covid but does mention Fibromyalgia
2/
“(Contd) Research shows this pattern holds over time, shaping what gets attention, funding, and clinical confidence. Layered into it is disability bias, the quiet pull to take conditions that aren’t easily fixed less seriously. (contd)”
From @onelife_livedwell on IG: Let’s talk about the disease prestige hierarchy, or the way some diagnoses are consistently seen as more legitimate and easier to recognize than others.
#chronicillness #invisibleillness #spooniesupport
1/
Please contribute if you can.
@Berkeley.edu takes ApplePay now which makes things a lot easier if like me you’re living an energy depleted life.
CRASH PREVENTION BY GALEN WARDEN From the forthcoming book, Dying to Live The most urgent thing you can do to prevent someone with Mild ME/CFS or Long Covid from becoming as severely ill as my son James, who is 100% bedrid-den, is to let them rest. Only extreme, radical rest will allow their bodies, their cells, to regroup and recover. A universal symptom of ME and Long Covid is Post Exertional Malaise (PEM). The body just seems to give out after exertion. If someone with mild ME or Long Covid is unusually tired at the end of a day of work, or from cleaning their home, going shopping, climbing stairs, attending a party... things they would normally have had no problem with... listen to them. Encourage them to stop, to get in bed and rest, and to stay there except for doing necessary things that won't exert enerov
CRASH
PREVENTION
BY GALEN WARDEN
From the forthcoming book, Dying to Live
The most urgent thing you can do to prevent someone with Mild #ME/CFS or Long Covid from becoming as severely ill as my son James, who is 100% bedrid-den, is to let them rest. Only extreme, radical rest will allow their bodies
1) 🇩🇪 There are now multiple trials of Immunoadsorption/plasmapheresis on ME/CFS. We've tried to make a brief overview but feel free to add studies in case we missed some.
Looks like all of them are from Germany. Mostly look forward to the 2 sham-controlled trials.
1) 🇨🇳 There's a new review on exercise therapy for ME/CFS, written by a Chinese group in the Journal of Psychosomatic Research.
It claims that exercise improves fatigue with a big effect (SMD = 0.85) but that it didn't improve functional capacity or cardiopulmonary function.
It's been three and a half decades since I contracted the flu, probably a virus, that stole my active life. I got sick & never recovered. Today is my M.E. anniversary, my "sickiversary." People with Long COVID are only beginning a journey that for me has lasted 35 years. #millionsmissing
Liz has been a vital member of #MEAction and #MEAction Georgia for years.
We are so honored to be in this fight together with amazing advocates like Liz.
Send Liz all your best! Those sickiversaries can be tough!
Sending out love to our whole community today and always.
We’ve launched Frail and Furious- a year-long campaign aimed at protecting Medicaid access for people with ME, Long COVID and other disabilities. Advocacy Manager Therese Russo shares more here: youtube.com/shorts/C-3lW...
Please join us at millionsmissing.org.
#Medicaid #pwME #MECFS #LongCovid
Time to get ready for #MillionsMissing which will be May 9th-16th with focus on the 12th!
We have a guide by energy level to help you safely join in!
The goal of the guide is to do the SAFEST energy level for you and all the ones under it if possible.
Toolkit: bit.ly/MM2026toolkit
ICYMI: Watch our webinar with Dr. Carmen Scheibenbogen on her Catalyst Award-winning study on #GLP1 drugs, #MECFS, and subtyping.
youtu.be/v_c3wSmmJeA
Graphic with Monash University and Emerge Australia logos showing broccoli, sweet potato, pear, oats, and gut and heart icons. Text reads: ‘Research opportunity – How does fibre affect the symptoms of long COVID?’
Monash Uni is recruiting adults 18+ with long COVID for a dietary fibre study. Includes study foods, 2 Alfred Hospital visits, samples + short check-ins. Info: zurl.co/KYWwM
Survey: zurl.co/wIL0U
💙
Helen Gibson and Edward Monroe on BBC Radio 4’s Feedback challenge Suzanne O’Sullivan’s claims that #LongCovid is largely psychosomatic when she was interviewed on Amol Rajan’s podcast. Mentions #MECFS, NICE’s 2021 guidance and DecodeME genetic findings.
Nikki Proctor on BBC Radio 4’s Feedback says she was surprised Amol Rajan didn’t raise #MECFS with Suzanne O’Sullivan on his podcast, after O’Sullivan said #LongCOVID was largely psychosomatic, given the “backlash and criticism of her position” on #MECFS.
Powerful testimony on #MECFS by Emma Shorter in the Scottish Parliament from 2018
“It turns fit and active people into ghosts… I know teachers who can’t teach, children who can’t play, and parents who can no longer hold their children.”
Emma Shorter was told people who don’t recover from behavioral treatment for #MECFS have made the illness their personality. She was told not to meet other patients and to trust the therapist over her own body. She went from walking 4 mins a day to needing a wheelchair.
Aspect of care Visible disabilities (mobility, sensory loss) Non-visible disabilities (autism, chronic fatigue, dysautonomia, chronic pain) First impressions Needs legitimized immediately by physical cues Needs can be missed when symptoms are fluctuating or not easily measurable; presentations may be misattributed under time pressure or uncertainty Service adjustments Physical access (ramps, signage, interpreters) increasingly routine Adjustments such as quiet waiting rooms or pacing-aware consultations remain rare and ad hoc Data visibility Clearly coded, tracked in audits and inspections Poorly coded, rarely measured; “what is not counted is not resourced” Professional habits Seen as straightforward to accommodate Diagnostic overshadowing and premature closure more likely; stigmatizing shorthand can emerge (“non-compliant,” “difficult consultation”) unless explicitly addressed in training Patient experience Some frustration with patchy provision, but needs usually recognized Frequent reports of disbelief, stigma, and avoidance of services; risks to safety and trust How visible and hidden disabilities are treated differently in clinical practice. Evidence sources: Concepts and examples in this table are informed by literature on the hidden curriculum (1), disability-related health inequalities (4, 18), diagnostic overshadowing (16, 17), autism and primary care experience (15), learning disability registers and coding gaps (14), and system-level adjustment mechanisms including the Accessible Information Standard and Reasonable Adjustment Flag (9–12).
New:
"How visible and hidden disabilities are treated differently in clinical practice"
From:
Non-visible disability in the medical curriculum: what medicine overlooks, patients inherit
www.frontiersin.org/journals/med...
#Hiddendisabilities #invisibleillness #Invisibledisability #hiddenillness
Graphic styled as a reminder note pinned to a calendar. A blue sticky note reads: “Reminder – Online Support Group.” Event title: “Who Am I Now? Identity and Chronic Illness.” Date and time: Tuesday, April 21 at 1:00 pm MDT. Background shows a monthly calendar layout, reinforcing the reminder theme. Bateman Horne Center logo appears at the bottom.
When illness changes your life, it can also change how you see yourself.
This Support Group is a space to gently explore identity, meaning, and who you are becoming, alongside others who understand.
Join us Tues, April 21 💙
🔗 https://batemanhornecenter.org/events/
If you’re able, please donate…
David is a hero!
The Sick Times I developed Long COVID while practicing medicine. The system had no place for me An important essay from internal medicine resident Mustafa Talat: "Medical institutions must educate staff that Long COVID is a disabling condition affecting up to 40% of healthcare workers who contracted and continue to contract COVID-19 while working in hospitals that have failed to control the spread of the virus and other pathogens."
The Sick Times @thesicktimes.org : I developed Long COVID while practicing medicine. The system had no place for me
thesicktimes.org/2026/04/17/i...
Screenshot from latest Science for ME weekly update
#LongCovid #Medsky
Association of ADIPOQ rs1501299 with long-COVID syndrome: a single-center cross-sectional study — Mavroudis et al "the homozygous GG genotype increased the risk for fatigue as a Long-COVID symptom, compared to T allele carriers (OR 2.4, 95% CI 1.2, 5.0, p = 0.014)." "This correlation was also independent of age, sex, BMI, waist to hip ratio, severity of the acute disease and any of the comorbidities."
From Greece
Association of ADIPOQ rs1501299 with long-COVID syndrome: a single-center cross-sectional study
www.tandfonline.com/doi/full/10....
Screenshot from latest Science for ME weekly update
#LongCovid
Well, it's now up to 27% of the goal, with 186 donations. So, it's moving along a bit. Thanks to all!!--https://crowdfund.berkeley.edu/project/49720
Insights into Pathophysiological Pathways in ME/CFS Through Genetic Correlation and Mendelian Randomization — Wielscher et al "findings indicate that ME/CFS susceptibility reflects interacting pathways involving barrier–microbiome dysfunction, neurovascular instability, inflammation, platelet activation, and impaired cellular energetics"
Insights into Pathophysiological Pathways in ME/CFS Through Genetic Correlation and Mendelian Randomization
www.researchsquare.com/article/rs-9...
Uses data from DecodeME
Screenshot from latest Science for ME weekly update
#MEcfs #PwME
Donated
David Tuller DrPH has shown he has a:
-good skill set for this type of work
-good knowledge base from following the field closely for many years
-an appetite as it can be very draining
Proponents of exercise/psychologicalisation/etc are still around
#MEcfs #LongCovid #CFS #PwME
Access to Work Is Missing the Point for People With M.E./C.F.S. News provided by Stripy Lightbulb CIC on Monday 20th Apr 2026 facebook sharing buttonemail sharing buttonsharethis sharing buttonlinkedin sharing button UK-based Community Interest Company, Stripy Lightbulb CIC is raising serious concerns about the suitability of support currently being offered to people living with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (M.E./CFS) through the Department for Work and Pensions’ Access to Work scheme. Recent reporting by The Canary, to which Stripy Lightbulb CIC contributed, highlighted how people with M.E./C.F.S. are being directed towards coaching services that categorise the illness as a form of “acquired neurodivergence”. These services typically focus on cognitive, behavioural or workplace coaching approaches. Our concern is straightforward: this type of support does not address the fundamental barriers to employment experienced by people with M.E./CFS and other energy‑impairing conditions. M.E./CFS is a serious, multisystem disease characterised by post‑exertional malaise, where physical or cognitive exertion can cause significant and prolonged worsening of symptoms. For many people, the primary barrier to work is not confidence, organisation or mindset, but a severe and unpredictable lack of usable energy. No amount or style of coaching can resolve this.
(UK press release by Stripy Lightbulb CIC)
"Access to Work Is Missing the Point for People With M.E./C.F.S."
pressat.co.uk/releases/acc...
#MEcfs #PwME
15h by Author I tried to Pace but never really mastered it, as a mom there are so many things... Then I couldn't do ANY of the things because my moderate ME became very severe ME. It is a whole other world, that I didnt even realize was a possibility! Now I'm bedridden and dependent on anyone who happens to check if my commode needs empty or if I have water or food. On a good day I can brush my child's hair. Take pacing seriously! Reply Message Hide 2
A tragic cautionary tale that was posted on my Facebook page. 😢
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Davit Tuller has been a great enforcer of science and academic integrity for ME/CFS. He has continuously debunked fraudulent "science" like the infamous PACE trial.
Please support his work if you can.
#MECFS #LongCOVID
Great development in the research field. Survey completed.
