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besminlif.bsky.social

@besminlif.bsky.social
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Adam @abrokenbattery.bsky.social · 02/10/2026
“If we weren’t so ill, those of us with this awful disease would be shouting it from the rooftops.” Eleanor Dent describes being largely housebound with #MECFS, from difficulties getting benefits to harmful advice, and still no treatment after 24 years.
Letter
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Tom Kindlon @tomkindlon.bsky.social · 08/10/2026
From the popular Diploma Duck account on IG, FB and probably elsewhere “ME/CFS (explained by ducks)” (58 seconds) #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #PEM
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ME/CFS Science @mecfsscience.org · 06/10/2026
1) "... the medical aspects of the illness are on the whole better understood by sick people than by their doctors..." In this new paper, philosopher Chloé De Canson details how the ME/CFS community shares and produces scientific knowledge.
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The Sick Times @thesicktimes.org · 05/10/2026
Newly knighted ME advocate Anil van der Zee discusses his royal honor with @davetuller1.bsky.social: thesicktimes.org/2026/10/02/a...
ME advocate Anil van der Zee holds the Knight in the Order of Orange-Nassau medal in his home. He poses with Amsterdam mayor Femke Halsema in a darkened room. The text reads, “Virology Blog x The Sick Times. Anil van der Zee receives Dutch royal distinction. The newly knighted ME advocate discusses his royal honor with David Tuller. Interview.”  I don’t especially care for awards in general, nor do I enjoy doing this “work.” It’s not a new calling in life. I’m not an activist or patient advocate, although I realize others might label me that way. I have better things to do than having to fight for basic healthcare, debunking shoddy science and so on. It’s borne out of sheer desperation as a patient in the hope of getting better or at least being sick with proper care. Just being sick without having to fight for other things we’re currently dealing with as patients would already be amazing.
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Chloé de Canson @chloedecanson.bsky.social · 05/10/2026
Why do people with ME claim to know more about the medical aspects of their disease than their doctors? Because the mechanisms that usually ensure doctors' knowledge fail in the case of ME, and sick people have created mechanisms of knowledge production and dissemination to pick up the slack.
Screenshot of the header of a published paper: 

Studies in History and Philosophy of Science

Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis

Chloé de Canson

Department of of Theoretical Philosophy, University of Groningen, Oude Boteringestraat 52, Groningen, 9712 GL, the Netherlands
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besminlif.bsky.social @besminlif.bsky.social · 05/10/2026
#MECFS fundraiser raising money for Action for M.E. @actionforme.bsky.social
justgiving.com
Andrew's fundraiser for Action for M.E.
Help Andrew Devereux-Cooke raise money to support Action for M.E.
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Adam @abrokenbattery.bsky.social · 04/10/2026
My #MECFS Scandal explainer has just hit half a million views on YouTube. I remember worrying that 27 minutes was too long and nobody would watch it. I never expected it to get so many. Thank you to everyone who shared it! Here’s the trailer 👇
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ME/CFS San Diego @mecfssd.bsky.social · 30/09/2026
@weandme.bsky.social Charity Gala at Kittsee Castle: Around 210 guests raised €191,659 for ME/CFS research, with every euro going to WE&ME Projects. www.weandmecfs.org/charity-gala...
weandmecfs.org
Charity Gala in Kittsee: A Look Back at an Evening for ME/CFS
A look back at the charity gala at Kittsee Castle: the guests, the auction and €191,659 raised for ME/CFS research by the WE&ME Foundation.
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valebodi.bsky.social @valebodi.bsky.social · 30/09/2026
Sleep in #ME/CFS shows marked night-to-night fluctuation under free-living conditions-results from a matched case-control study #pwME
link.springer.com
Sleep in myalgic encephalomyelitis/chronic fatigue syndrome shows marked night-to-night fluctuation under free-living conditions—results from a matched case-control study - Journal of Clinical Sleep M...
Purpose Unrefreshing and non-restorative sleep is a hallmark complaint in people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). However, little is known about their habitual sleep a...
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Billy Hanlon @bhanlon15.bsky.social · 01/10/2026
Many thanks to @angeladavismpr.bsky.social for covering this important topic today with @mprnews.org
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ME/CFS Science @mecfsscience.org · 29/09/2026
1) An initiative worth sharing: The Severe & Very Severe ME Research Registry. It's a website that provides access to research for severely and severely affected ME/CFS patients from Germany, Austria and Switzerland (DACH region).
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Chris Ponting @cgatist.bsky.social · 28/09/2026
The 2026 PRIME symposium kicks off with reflections from Kelly McLellan on the importance of Patient and Public Involvement in ME/CFS research. #Prime26 #pwME #mecfs
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Adam @abrokenbattery.bsky.social · 23/09/2026
Prof Simon Carding on BBC Radio Norfolk yesterday discussing DISCOVER-ME, a €7.6 million international ME/CFS research project. His team in Norfolk, along with more than 20 institutions across Europe and Canada, are investigating the biological mechanisms of the disease.
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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 26/09/2026
I’m only seeing people with ME or Long Covid sharing this. If you’re not affected, can you please read it & share? Ableist propaganda goes viral all the time, which encourages outlets to publish more of it. Can we please make the truth go viral instead?
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The Vertlartnic @thev.bsky.social · 28/09/2026
For Decades Doctors Thought Post-Infection Syndromes Were Hysteria, Then Stress, Then Trauma, Before Finally Discovering They Were All In The Mind
A doctor reassuring their patient that they're just crazy
Headline:
For Decades Doctors Thought Post-Infection Syndromes Were Hysteria, Then Stress, Then Trauma, Before Finally Discovering They Were All In The Mind
Story by Sorin Malvolio and Frunk Wurlitzer

Photo from Adobe
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Science for ME (S4ME) @s4me.info · 28/09/2026
🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 21 - 27 Sep 2026
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 28/09/2026
George Monbiot speaks to Natasha Devon on LBC abt the decades of neglect, dismissal & mistreatment of ppl with ME/CFS. They discuss the psychologisation of ME/CFS, GET, the PACE trial, PEM & the urgent need for greater recognition, research & better care. [8 mins] +Transcript tinyurl.com/5xej5uak
tinyurl.com
LBC | Natasha Devon interview with George Monbiot
George Monbiot speaks to Natasha Devon on LBC about the decades of neglect, dismissal and mistreatment of people with ME/CFS. They discuss the psychologisation of ME/CFS, graded exercise therapy (GET), the PACE trial, post-exertional malaise (PEM), and the urgent need for greater recognition, research and better care. Broadcast on LBC, 26 September 2026. Read George Monbiot’s Guardian article: https://www.theguardian.com/commentisfree/2026/sep/24/abandoned-dismissed-and-gaslighted-me-sufferers-betrayed
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Kelly @broadwaybabyto.bsky.social · 27/09/2026
People aren’t faking their disabilities, they’re faking being well. We know society hates us. We know we will be judged for using assistive devices. Many of us take years to get the courage to lean in to accommodations. Stop judging. Help us build a more inclusive world.
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Adam @abrokenbattery.bsky.social · 26/09/2026
Symptoms are “horrible” and severe cases are a “living nightmare.” @georgemonbiot.bsky.social speaks to @natashadevon.bsky.social on LBC about ME/CFS, its long history of being dismissed and psychologised, and the role of governments and insurers.
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ME/CFS San Diego @mecfssd.bsky.social · 24/09/2026
Trigger Warning, Arnaud Denis: Person with severe ME/CFS died by euthanasia in Belgium on Sept. 22. ME Global Chronicle shares his account of healthcare and final message to fellow patients. meglobalchronicle.wordpress.com/2026/09/23/i...
meglobalchronicle.wordpress.com
I’m done with medical abuse
Arnaud Denis, a 43-year-old French director and actor, passed away in Belgium on September 22, 2026. A few years ago, following surgery, he developed a very severe case of ME/CFS. He chose to under…
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Daniel Padfield @padpadpadpad.bsky.social · 24/09/2026
You know your life is going well when it's covered by @georgemonbiot.bsky.social. Severe ME takes everything and yet we don't know how to treat it. The NHS regularly just ignores sufferers as a result.
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 25/09/2026
This blog explains why some are calling for new research into the impact of the anxiety drug buspirone on people with ME. 30 years ago it was discovered that its effect on the hormone prolactin differed significantly in ME to depression. tinyurl.com/2cvncc42
tinyurl.com
Increased prolactin response to buspirone - ME/CFS Science
Multiple studies have found an increased response of the hormone prolactin to the drug buspironeContinue readingIncreased prolactin response to buspirone
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David Tuller @davetuller1.bsky.social · 25/09/2026
Journal of Psychsomatic Research has recently published a first-person narrative of "cure" from the Lightning Process as if it were bonafide scientific "research" that somehow proved that the LP was effective. virology.ws/2026/09/25/t...
virology.ws
Trial By Error: Journal of Psychosomatic Research Publishes First-Person Account of "Cure" with the Lightning Process | Virology Blog
By David Tuller, DrPH The Journal of Psychosomatic Research (JPR), an official publication of the European Association of Psychosomatic Medicine (EAPM), has ...
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George Monbiot @georgemonbiot.bsky.social · 24/09/2026
Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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Billy Hanlon @bhanlon15.bsky.social · 24/09/2026
The Guardian: 'Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed' By George Monbiot www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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Chris Ponting @cgatist.bsky.social · 21/10/2024
A personal viewpoint on #MECFS. This is focused not on #pwME rather on why we - society - forsake them. Please read ⬇️ theconversation.com/ignored-blam...
theconversation.com
Ignored, blamed, and sometimes left to die – a leading expert in ME explains the origins of a modern medical ‘scandal’
The co-lead of the world’s largest ever genetic study into ME calls for a radical change in how society deals with the disease.
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 23/09/2026
PRIME International Symposium a 2-day hybrid event: 28-29 Sep. The new International Genetic Epidemiology of ME/CFS Consortium will be launched ad early Career Researchers and the Patient and Public Involvement Research Involvement Hub will present “exciting new research". tinyurl.com/2w6vjzre
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ThereForME @thereforme.bsky.social · 23/09/2026
We're excited to share something we've been working on for a while. ThereForME is now a registered charity! 🥳 1/4
We’ve got news!

ThereForME is now a registered charity. 

ThereForME is a Charitable Incorporated Organisation
registered in England and Wales. Registered Charity No. 1218590.
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ME Association @meassociation.org.uk · 23/09/2026
1/2: Final call for this round of new volunteers - apply by 27th September! ME Connect is our frontline support service, offering support to people with ME/CFS over the phone and via email. If you have empathy and understanding for those living with ME/CFS, we would love to hear from you. #MECFS
IMAGE DESCRIPTION: Photo of two people holding hands in support. Heading: "Could you volunteer with our ME Connect Support Line?"
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Jon Douglas @atranscendedman.bsky.social · 23/09/2026
Lily Emmanuel developed fatigue, brain fog, breathing problems and multi-system illness after suspected COVID. Years of fluctuating disability led her into Long COVID research, where she now helps shape clinical trials. fnih.org/patient-enga...
fnih.org
Long COVID Struggle Inspires Interest in Medical Research | FNIH
Grappling with Long COVID as a high school freshman changed everything for Lily Emmanuel. Over time, this led to an enduring interest in science and research.
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Alem Matthees @alemmatthees.bsky.social · 23/09/2026
For the love of the universe and the sake of millions of people with #MECFS and #LongCOVID can some funding body please fund the rest of #SequenceME / LC already?! WGS is one of the greatest crowning achievements of science and has enormous potential for pointing the compass in the right direction.
actionforme.org.uk
Sequence ME & Long Covid
SequenceME & Long Covid is a major new whole-genome sequencing study to understand ME and Long Covid.
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Adam @abrokenbattery.bsky.social · 16/09/2026
Having the reality of your illness denied “is almost as bad as the actual physical symptoms themselves.” Ed Yong, speaking about #LongCovid patients being disbelieved and dismissed, and how gender and racial bias affect their care.
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Simon Spichak @spichaksimon.bsky.social · 23/09/2026
For @thesicktimes.org, I covered a petition that over 1,700 people have signed calling for a pause to a trial that's applying for ethical approval to test a psuedoscientific program for #LongCOVID called The Lightning Process. thesicktimes.org/2026/09/22/p... 1/n
Screenshot of Sick Times article. Title: "People with Long COVID demand pause of McMaster University clinical trial"

DEK: The trial, run by researchers at McMaster University in Canada, is testing the Lightning Process, a pseudoscientific mind-body program that outside experts have heavily criticized.

Image: A college buildingey points you should know:

A petition signed by 1,700 people asks for a pause and independent review of a trial run by McMaster University researchers who want to test the Lightning Process.
 
The Lightning Process is a pseudoscientific mind-body program to try to treat Long COVID that has been accused of exploiting people with Long COVID and related diseases.
 
The trial is designed in part by a Lightning Process practitioner and prescreens participants for motivation using a questionnaire that isn’t validated for Long COVID.
 
There are very few trials and little funding in Canada for Long COVID research, and advocates believe that studying the Lightning Process instead of pathobiological pathways is a waste of funding.
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Ash @ash27.bsky.social · 22/09/2026
Please sign petition against Lighting Process study at McMaster. Pseudoscience taking resources from actual scientific work must stop. LP is already discredited as a treatment and may cause harm #ME/CFS c.org/Ymh6MnsJrF
c.org
Sign the Petition
Long COVID Patients Deserve Better: Pause McMaster’s FALCON Lightning Process Trial
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Elke Hausmann @drelke.bsky.social · 22/09/2026
#LongCovid #ME
Busse did not directly address any prior criticisms of the program from neurologists, clinical psychologists, and other experts who argue that the course is implausible and pseudoscientific. A set of U.K. guidelines that inform the country's national health system specifically recommend against the Lightning Process for myalgic encephalomyelitis (ME), for which many people with Long COVID meet the diagnostic criteria. Busse referred to those guidelines, as well as the Lightning Process itself, as "controversial."
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betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 22/09/2026
Today @thesicktimes.org: People with Long COVID are demanding a pause and review for a planned clinical trial that would test the Lightning Process, a pseudoscientific mind-body treatment. By @spichaksimon.bsky.social: thesicktimes.org/2026/09/22/p...
thesicktimes.org
People with Long COVID demand pause of McMaster University clinical trial - The Sick Times
The trial, run by researchers at McMaster University in Canada, is testing the Lightning Process, a pseudoscientific mind-body program that outside experts have heavily criticized.
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Rebel @rebellionista.bsky.social · 23/09/2026
The dental nurse yesterday, after I said it was my first time out of the house in a year… “You should get out more, it’s good for you”. Then I had to explain, no, it actually makes me sicker. People just don’t believe it. #SevereME #MEcfs
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Irish ME/CFS Association @irishmecfsassoc.bsky.social · 21/09/2026
"What about M.E.?- Four Short Plays About Myalgic Encephalomyelitis (Culture Night 2026)" www.youtube.com/watch?v=IYID... Congrats to all involved (including 2 Assoc members, Aoife Delany Reade & Jacinta Fay) See next post for more info #MEcfs #PwME #speirgorm #DisabilityArt #speirghorm 1/
"What about M.E.?"
What about M.E.?- Four Short Plays About Myalgic Encephalomyelitis (Culture Night 2026)
Aoife Ní Mhaoildeirg
Aoife Ní Mhaoildeirg
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306 views  Premiered Sep 18, 2026  O'DONOGHUE CENTRE FOR DRAMA, THEATRE AND PERFORMANCE
We shouldn't be this sick, right? 

Across Ireland, thousands of people are living with a chronic, complex, multi-systemic disease that keeps one in four confined to their homes- often without answers or treatment. 

‘What about M.E.?’ is a collection of four-short plays written about and by people living with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) & Long-Covid- exploring what it's like living on pause in a world obsessed with moving forward.
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Tom Kindlon @tomkindlon.bsky.social · 20/09/2026
From Japan 🇯🇵 FreeSurfer-based amygdala subfield volumetry in long COVID and ME/CFS: clinical and immunological correlations www.frontiersin.org/journals/neu... "No group difference or partial correlation remained significant after correction for multiple testing." #MEcfs #LongCovid #CFS #PwME
frontiersin.org
Frontiers | FreeSurfer-based amygdala subfield volumetry in long COVID and ME/CFS: clinical and immunological correlations
BackgroundLong COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) share debilitating symptoms and have been associated with limbic-system ...
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Alem Matthees @alemmatthees.bsky.social · 21/09/2026
A useful illustration by Redditor [hazelemons] from the sub-Reddit r/cfs which has received praise for its general accuracy and range of disability. (www.reddit.com/r/cfs/commen...) But very severe ME/CFS needs a graph of its own (see next post).
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George Monbiot @georgemonbiot.bsky.social · 21/09/2026
Thanks so much everyone for a massive response. I've now had as many emails as I can cope with, so no more please - thank you. They paint a really grim and heatbreaking picture. The neglect and abuse of patients goes on and on. I hope to try to do the issue justice. #ME/CFS
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Acey Woofer @acey.dog · 21/09/2026
Please watch this and raise awareness. I'm actually fucking crying! I was diagnosed with CFS 17 years ago. I was given no help, which in hindsight was me dodging a bullet. My symptoms have been worse in recent years (I believe linked with long-covid) yet I still get no help. youtu.be/RiwX9Y0NbiQ
youtu.be
ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
YouTube video by Broken Battery
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George Monbiot @georgemonbiot.bsky.social · 21/09/2026
Intending to write another column about the treatment of #ME/CFS patients this week, pegged to new research findings on the biological basis. My question for sufferers: Are any of you still being offered inappropriate (psych/GET etc) "treatments"? Please email george at monbiot dot info. Thanks.
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 21/09/2026
The S4ME forum has started a thread for members to share stories of their ME/CFS journeys in up to 10 sentences: s4me.info/threads/your... The WE&ME foundation will ask some contributors if they can use their stories for advocacy. This is my story. Please consider sharing yours on @s4me.info
Once an academic scholar and keen sportsman, my ME/CFS symptoms came on suddenly in 1992 when I was a 19 year old student, following tonsillitis, suspected glandular fever and two courses of antibiotics. The transition from someone who was essentially well and able to participate in normal activities to someone who was very obviously unwell and incapacitated was marked and sudden. However, I suspect that there may have been something wrong with me prior to that as I had been unusually tired and prone to infections for a few years, along with unidentified problems in my knee and shoulder, which had limited my ability to run and play racket sports.
​
After struggling to live independently on and off for about 18 months, I returned to live with my parents fulltime in 1994. If I had known then what lay ahead, I would not have been able to cope, and I don’t know if I would still be alive. For about seven years I was almost completely bedridden, in excruciating discomfort, urinating into a bottle and eating meals in bed. Now aged 53 I am mostly housebound and cared for by my 80 year old mother in a wheelchair adapted annexe on the side of her house.One can be philosophical about loss and incapacity – about absence – but there is no philosophy that can overcome the presence of extreme physical discomfort and pain; of constantly feeling unwell. I am luckier than many people with my diagnosis in that some of my family and friends have been extremely supportive, and I have had some kind and helpful doctors, but like most people with ME/CFS I have also been let down, mistreated, ridiculed and abused, both personally and institutionally.

Love, solidarity and productivity, however limited, help to get me through the days, but I’m not sure that I could keep going without hope – hope of scientific understanding and a better quality of life.
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Science for ME (S4ME) @s4me.info · 20/09/2026
🧵 of highlighted #MECFS and #LongCovid research papers discussed in the last week on the Science for ME forum. 14 - 20 Sep 2026
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Anil van der Zee @anilvanderzee.bsky.social · 20/09/2026
Wow. Oscar winning filmmaker Martin Strange-Hansen has made a short film about the forced removal of a very severe ME patient in Denmark. This looks really amazing!! vimeo.com/user10350947... #pwme #myalgicE #millionsmissing #severeME
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ME/CFS San Diego @mecfssd.bsky.social · 19/09/2026
German Severe ME Registry: helps researchers identify and contact people with severe/very severe ME for potential studies, including home-visit research in Germany, Austria & Switzerland. linktr.ee/severe_me_re...
linktr.ee
ME_Registry Official: Instagram, X | Linktree
Linktree. Make your link do more.
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Tom Kindlon @tomkindlon.bsky.social · 20/09/2026
🧵 Being awake when others are asleep, being asleep when others are awake, feeling exhausted but not sleepy, waking up several times a night, waking up in the morning feeling unrefreshed...sleep dysfunction manifests in countless ways in ME/CFS www.meresearch.org.uk/the-experien... #MEcfs #PwME 1/
What sleep dysfunction in ME/CFS feels like 
Responses from ME Research UK Symptom Saturday Sleep Dysfunction Survey 
INFORM. INFLUENCE. INVEST.
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The Vertlartnic @thev.bsky.social · 15/09/2026
Why Are So Many Young Women Being Diagnosed With Chronic Health Conditions, Apart From The Obvious Reason
A young woman with chronic health conditions
Headline:
Why Are So Many Young Women Being Diagnosed With Chronic Health Conditions, Apart From The Obvious Reason
Story by Mal Evolent and Pippy Notnice

Photo from Adobe
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ME/CFS San Diego @mecfssd.bsky.social · 18/09/2026
Understanding ME/CFS: Dr. Michaela Bauer’s new 7-page introduction is an excellent resource for patients, families, friends, educators, clinicians, and anyone wanting to understand ME/CFS. It may be accessible for younger patients too. storage.e.jimdo.com/file/1caec72...
storage.e.jimdo.com
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