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#millionsmissing
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@farfadoc : le site de #MillionsMissing offre sur son site de la documentation à consulter pour les médecins.
Ci-joint, le site belge pour les professionnels...
Il y a aussi l'association #AprèsJ20 à qui vous pouvez demander.
(si seulement tous les médecins étaient comme vous!)
Mon interniste m'a recommandé la lecture d'un article dans la revue Nature aussi. Mais c'est de la recherche et pas des infos pratiques pour les patients.
Appliquer le #Pacing essentiellement!
https://www.millionsmissingbelgique.com/professionnels-de-sant%C3%A9
MMBelgiquePour les SOIGNANT_E_S | MillionsmissingbelgiqueContenu dédié aux soignant-e-s concernant l'encéphalomyélite myalgique ou syndrome de fatigue chronique (EM/SFC) : statut de l'EM en Belgique, critères diagnostiques, traitements et comorbidités
Symptom: Peripheral Neuropathy
2025-2-12 Starting imatinib for resistant mast cell symptoms.
https://www.illmarks.com/2025-2-12-starting-imatinib-for-resistant-mast-cell-symptoms/
Symptom: Icicle Stabbing Spondylitis
https://www.illmarks.com/symptom-icicle-stabbing-spondylitis/
Symptom: Derealization
2025-2-10 Fight Flight Freeze Fawn Acute Stress Response
Symptom: Disconnection
I have never felt so inhuman.
2025-1-22: Fire & Ice
Symptom: Coat Hanger Pain
I only learned about this term very recently, from yumpsuit on the Fediverse. Thank you so much for letting me know about it!
I am almost disproportionately thankful to have a handy description for letting people know what I’m feeling, as well as how to look for ways to try to mitigate the pain. Reading about Coat Hanger Pain resonated deeply, in a way similar to how I often feel when I get a diagnosis: a feeling of relief, connection, community, and hope.
Many people who have not been chronically ill see a diagnosis as a negative. Indeed, many disabled people are never told their diagnoses, and are never told they are disabled. This needs to change, because as Granite and Sunlight explained:
Many people are disabled for a long time before they get a diagnosis which explains what is happening to them, and there is a resistance in the medical profession to giving long-term diagnoses, especially for young people and for women with chronic conditions which lack good treatment options, because of an outdated belief that labels are limiting and they don’t want people to ‘see themselves as disabled’. The fact they are already disabled, already struggling, is why disability justice advocates are trying to help medical professionals change their approach to this. Most people just want answers and context for what is happening to them – not having a name for it doesn’t mean it isn’t affecting their lives. Diagnosis gives people access to context, support and community who can help a person manage the condition better, but these are not built into the medical response to disability. Despite these delays, the person is still disabled all that time, and still needs access to the support and adaptations which can help them live good lives managing their conditions.
For more information about this, I recommend Brianne of No End In Sight’s TEDx Talk, Disease Begins Before Diagnosis.
2025-1-19 MCAS trigger: allium smell
https://www.illmarks.com/2025-1-19-mcas-trigger-allium-smell/
@armeline : Merci merci merci 
J'étais photographe et photojournaliste. Ca fait 3 ans que je collecte des documents scientifiques pour tenter de réaliser un reportage sur l'#EM et par la force des chose le #CovidLong mais étant lourdement handicapée à présent, ce travail m'est devenu très lourd. Je suis l'association #MillionsMissing et #ApresJ20. Je débarque sur Mastodon, laissant derrière moi, ma communauté fb. C'est dur! Suis contente de t'avoir trouvé!
2025_1_20 environmental allergies triggered (MCAS)
MCAS, or mast cell activation syndrome, is a common post-viral illness which can give severe, dangerous allergic reactions even to people who had no allergies previously, like me.
A few days ago I tried to clean out my old apartment, which we’d removed the air purifiers from, and immediately broke out in rashes and hives. I was mentally struggling and afraid. When I remembered I had a KN95 mask in the car, it helped a lot, but MCAS is a deeply terrifying and hard to understand condition.
There are resources in my about page about MCAS, but here are a few:
Broadwaybabyto’s “Welcome Guide” to MCAS:
– When You’re Allergic to Everything and Nothing… That’s MCAS (MCAS pt 1)
– MCAS and Histamine – Diet isn’t the ONLY Answer(MCAS pt 2)
And two other blogs dedicated to Mast Cell condition information:
– Mast Attack (Blog, on Mast Cell Conditions)
– Jodie Ettenberg’s Mast Cell Activation Syndrome Resources (Blog, on Mast Cell Conditions)
https://www.illmarks.com/2025_1_20-environmental-allergies-triggered-mcas/
2025_1_25 just going about my day feeling impaled…
It has occurred to me I wrote the date wrong, it was 2025-1-22, but I’m sure I’ll still feel impaled in two days, so alas.
2025_1_20 environmental allergies triggered (MCAS)
MCAS, or mast cell activation syndrome, is a common post-viral illness which can give severe, dangerous allergic reactions even to people who had no allergies previously, like me.
A few days ago I tried to clean out my old apartment, which we’d removed the air purifiers from, and immediately broke out in rashes and hives. I was mentally struggling and afraid. When I remembered I had a KN95 mask in the car, it helped a lot, but MCAS is a deeply terrifying and hard to understand condition.
There are resources in my about page about MCAS, but here are a few:
Broadwaybabyto’s “Welcome Guide” to MCAS:
– When You’re Allergic to Everything and Nothing… That’s MCAS (MCAS pt 1)
– MCAS and Histamine – Diet isn’t the ONLY Answer(MCAS pt 2)
And two other blogs dedicated to Mast Cell condition information:
– Mast Attack (Blog, on Mast Cell Conditions)
– Jodie Ettenberg’s Mast Cell Activation Syndrome Resources (Blog, on Mast Cell Conditions)
https://www.illmarks.com/2025_1_20-environmental-allergies-triggered-mcas/
