grumpyhobbit

A “Wanted!” poster-style graphic advertising for guest writers about EDS and mobility aids. The design looks like an old western wanted poster with a tan paper background, dark border, and two illustrated pointing hands near the top left and top right edges. Text on the poster reads: WANTED! Two guest writers for pieces on your experience with EDS and mobility aids. $100 USD/piece. Send pitches to: contact@karina-sturm.com chronicpainpartners.com A circular logo on the left says “EDS Awareness” with smaller text “Ehlers-Danlos Syndromes.” There are cartoon illustrations of three people using mobility aids: one standing with forearm crutches in the center, one seated in a wheelchair on the right, and one on a recumbent handcycle or adaptive trike on the left. A light-colored dog is lying down near the bottom center.

Wanted! Two guest writers to write about your experiences with EDS and mobility devices. Paying $100 USD /piece. Send pitches to: contact@karina-sturm.com thanks.

#EDS #hEDS #HSD #Hypermobility #Disability #Mobility #Writers #Writing #Zebras #Spoonies #NEISvoid

LPT: if you're increasing the dose of a medication after several years on the old dose

maybe leave a post it on the medication bottle or something

so you don't automatically use the old dose when you're refilling your weekly pill boxes

(in related news: hrrrfggggh)

#NEISvoid

Behind the Scenes of Chronic Illness: What People Don’t See Uncover the daily challenges of living with chronic illness that people don’t see and find practical strategies for managing pain, fatigue, and the mental load that comes with living with IIH and…

"we may seem okay on the surface, especially if we’ve mastered the art of #masking our #pain or discomfort. But what many don’t realize is the sheer effort it takes just to get through the day, let alone #thrive.”: buff.ly/oSGtqJ6

by @thethrivingspoonie.com
#InvisibleIllness #neisvoid #ChronicPain

Yay you!!

YouTube video by Broken Battery BBC Inside Science - £1.1M ME/CFS and Long Covid Study

BBC Radio 4 Inside Science interview with Professor @daltmann.bsky.social (8 mins) discussing the Rosetta Stone study, a £1.1m research programme funded by the @meassociation.org.uk to investigate shared immunological pathways between #MECFS and #LongCovid.

youtu.be/eu8Lj_R-OtQ?...

ME/CFS Impact Statement template resource:

"You can use this template to communicate how ME impacts you & what adjustments you need to access the services & support you are entitled to"

www.actionforme.org.uk/resource/imp...

Designed for UK but anyone could use it

#MEcfs #PwME #CFS #SevereME

Germany Declares ‘National Decade’ to Solve the Mystery of Long Covid and ME/CFS Germany Declares ‘National Decade’ to Solve the Mystery of Long Covid and ME/CFS

This seems very positive. Hopefully one day we will see something like this in the UK!

rtvonline.com/english/inte...

Email sent to NHS elearning enquiries on 12 January 2026. Subject - Request for information. Dear NHSE elearning hub, I am making a freedom of information request (FOIA 2000) for the following data. In 2024/5, the NHS England elfh e-learning hub introduced 3 new modules on ME/CFS: 1. An introduction to ME/CFS (May 2024). 2. ME/CFS: guidance for community-based healthcare practitioners (January 2025). 3. Managing Severe ME/CFS (September 2025). Please can you tell me how many people have completed each module to date (from date of introduction), and what the breakdown is for logins by NHS staff (nhs.uk), and those in government (gov.uk), academic (ac.uk), and social care sectors (if available). I am happy for your response to be sent to this email address. Many thanks for your help, Lucy B

About a month ago, I made a FOIA request to the NHS England Learning Hub about their new learning modules on ME/CFS...

🧵 1/n

A harrowing account of applying for care funding for severe ME

#LongCovid
#ME

As Karen points out in her blog, the lack of (or extreme difficulty obtaining) CHC funding for people with very severe ME is another failure of the #MEDeliveryPlan.

The Plan simply does not mention it.

Astounding. 😖

This is sadly how a broken system routinely doesn’t work for people with many different conditions

We need to urgently fix health and social care

Additionally we need to change how severe ME/CFS is seen by health and social care professionals and wider society, people just don’t accept the reality

A rabbit in overalls and a goat in pants are sitting on the ground drawing pictures. The rabbit is saying “ART POSES A THREAT TO CORPORATOLRATIC SYSTEMS BECAUSE A PURPOSE OF ART IS TO REMIND THE INDIVIDUAL OF THEIR INHERENT AUTONOMY.”, the goat adds “THEIR HUMANITY.”

Make Art (1/4)

New fuck/marry/kill list just dropped

Can I rage quit my disability wrath?

It is exhausting....
#chronicallyill #fatigue #LongCovid #MECFS

Kerpers Pillendose Pillenturm 7-Tage bunt: Jede der Pillenschälchen hat einen Wochentag aufgedruckt

"Woher ich weiß, dass heute Dienstag ist?" #MECFS

Logo du journal la Marseillaise Logo du collectif voxEM, un lit duquel émerge un mégaphone. Texte de la brève de presse ; Cloués au lit, abandonnés par l'État Les malades d'encéphalomyélite myalgique (EM ou EM/SFC) se rassemblent samedi 7 février autour d'un lit géant à 14h30 sur la place Charles de Gaulle à Marseille pour sensibiliser le public à une maladie qui toucherait plus de 400 000 personnes en France. Grave et invalidante, cette maladie reconnue par l'OMS est déclenchée par une infection dans 80% des cas. Pour autant, en France, sa méconnaissance et le manque de • reconnaissance du handicap qu'elle inflige ajoutent à la douleur des malades. Le collectif VoxEM dénonce « le déni des symptômes, le refus de droits sociaux, des prises en charge inadaptées ». demande aux politiques et aux autorités médicales «de prendre l'urgence de la situation et un financement de la recherche biomédicale ».

Brève de La Marseillaise la veille de notre action.
Celle-ci a bien eu lieu, en décalé à cause des averses.
Malgré tout, une belle présence au milieu de la Canebière, avec le lit géant !

Merci à @stephanarko.bsky.social, notre relai local et à la journaliste.

#pwme #mecfs #severeME #marseille

Why these symptoms?
Deep exhaustion, brain fog, unrefreshing sleep, days-long crashes after small effort, or extreme sensitivity. These symptoms are real, connected, and share a common root.
www.healing-space.online

#longcovid #mecfs #fibromyalgia #pem #brainfog #crash #nervoussystem

Leben mit MCS: Wenn selbst frische Wäsche zur Bedrohung wird Menschen mit Multipler Chemikalien-Sensibilität reagieren auf winzige Mengen alltäglicher Stoffe mit starken Symptomen. Die Medizin rätselt über den Grund.

Eine Krankheit, die einsam macht: Meine Kollegin @rutheisenreich.bsky.social berichtet über das Leben mit Multipler Chemikalien-Sensibilität #MCS - ein eindrucksvoller Text, große Lese-Empfehlung: www.riffreporter.de/de/wissen/mu... @riffreporter.bsky.social

My German is okay, but I am no longer fluent in German. I try to somewhat screen German skeets before I reskeet. But if there is something in German that I skeet that you have problems with let me know.

I don't post much politics here because I am trying to keep this account small. But I am definitely political, and I have many opinions. You can see my main account in my bio.

Woo hoo… I’ve been able to successfully add both organic dates and seedless watermelon into my tolerated foods. 🎉
Slowly slowly slowly patiently increasing from just two foods (🍗🥕) 8 yrs ago to abt 12 specific foods now-5 of them in the last year🤸🏼‍♂️
#MastCellDisease #MCAS #ChronicIllness #HEDS #ME/CFS

In unserem Halbjahresbericht Winter 2025 geben wir ein Update zu einem unserer Fokusthemen: Forschende vernetzen.
Im Fokus stehen die Int. ME/CFS Conference 2026 und das Update des ME/CFS Research Register mit Projekten aus 6 Ländern.
👉https://mecfs-research.org/2025winter-report/

Long-Term Study Links Moderate Coffee and Tea to Lower Dementia Risk Last updated 59 minutes ago A Harvard study followed 131,000 U.S. adults for up to 43 years and discovered that two to three cups of caffeinated coffee daily cut dementia risk by 18% compared to nondrinkers, with similar benefits from one to two cups of tea. Decaf showed no advantage, suggesting caffeine or compounds like polyphenols play a key role, and cognitive decline was less common among coffee drinkers. While observational, the large-scale findings offer encouraging evidence that moderate caffeinated brews could support brain health alongside exercise and good sleep. This story is a summary of posts on X and may evolve over time. Grok can make mistakes, verify its outputs.

Another fairly easy thing one can do (like exercising) for your health that is challenging or impossible for people with ME/CFS. ☹️ Don’t think I have had any caffeinated coffee or tea in the 31 years I have #SevereME. #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Archives: Events 1:00 pm - 2:00 pm Online Support Group February 3 @ 1:00 pm - 2:00 pm MST Online Support Group Topic: Chronic Illness: Facing Limits and Losses (Moving through Grief) » Click here to register Description: These support groups are tailored for individuals living with ME/CFS, FM, Long COVID, and […...

☕ Join our next "Coffee" with a Clinician on Assessing Impaired Function (Clinical Evaluation), with a focus on cognitive impairment in ME/CFS & Long COVID.

Feb 11 | 10am MST
Free | Zoom + YouTube livestream
🔗Register:

Möchte euch den sekundären Krankheitsgewinn von #MECFS #longcovid #PAIS #postvac nicht vorenthalten.

6 der Medikamente zu Lasten der Krankenkasse. Rest alles auf eigene Kosten. Nahrungsergänzungsmittel werden nur genommen, um bestehende Mängel auszugleichen und vorzubeugen.

Promotional graphic for the StudyME Registry. The background shows blurred researchers working in a lab. Text on a white banner at the bottom reads: “Do you want to help speed up the research process? Now you can! Join the OMF StudyME Registry: www.omf.ngo/studyme.”

🔬Help advance #MECFS and #LongCOVID research by joining OMF’s StudyME, a free global participant registry that connects you with researchers conducting studies in these areas. Healthy volunteers are needed too!

👉 Sign up today: https://www.omf.ngo/studyme/

When I first got sick w/ #MyalgicEncephalomyelitis in 1991 when I was 24, I was a DV Victim Advocate for King County.

Drs held it against me, insisting I was "burnt out", "doing too much", or was a DV victim myself and "hiding it".

When they might've helped, they hurt.

Little has improved.

All of us who got #MyalgicEncephalomyelitis in the '90s were told we were lying or that we could get well if we tried harder and that M.E.--then referred to by the hideous misnomer "chronic fatigue syndrome"--wasn't potentially fatal.

Every single part of that was wrong.

M.E. kills.

#pwME

YouTube video by Jarred Younger, PhD 083 - A precision approach to understanding ME/CFS

New research… #MECFS