Updated #NICE guidelines for #MECFS !

tumblr.com/thesecretlifeo… #myalgicE #myalgicencephalomyelitis #pwME #meaction

Did a gfm update: It's official, the infection caused by the edge of the cheap Amazon back brace is cellulitis. I had no clue how dangerous it is. Apparently you can ultimately die from it if it isn't managed quickly. gofund.me/cff39173 #disability #pwME #infection #MECFS

1/3 I'm livid. Admin from GP practice rang to confirm my dosage for LDN was being increased as per Dr Bansal's instruction. She noticed I had MECFS on my record and said 'I have that too'. She sounded EXHAUSTED. She said she spends her lunch break sleeping in her car. She said

Help I AM MADELINE here: gofundme.com/f/MadelinesMir…

*The grand total is an all-time total, it has been depleted.

Her budget via Ricochet Media: ricochet.media/uncategorized/… - by Simon Spichak (he/him) (Sep. 2023)

#BasicIncome #bcpoli #CanadaDisabilityBenefit #cdnpoli #MutualAidRequest #YVR

NHS hospitals must do better! #SevereME patient, 23 year old Carla, is deteriorating rapidly in hospital. Doctors have cancelled vital referrals, ignored experts’ instructions & caused MORE pain.

See @TheChronicCollaboration for live protest info.

#SaveCarlasLife #ExposeMEnow

It's official, it's cellulitis. in spite of worries about my chemical sensitivity reaction antibiotics there's no choice but to be on them. So well wishes & healing vibes are greatly appreciated as well as sharing the gfm as extra expenses for infection management are a big worry

Worrisomly, infection is borderline cellulitis so we're hoping topical antibiotic will be enough as oral antibiotics throw me off a health cliff. But to try to manage it is more expense on more expense. The Band-Aids alone(only ones that that skin tolerates) are 50 cents each😯

Our chair Michelle🌻 on yesterday's budget
#EndDisabilityPoverty #WeAreThe27Percent

YES!
'The truth is people with disabilities have much to contribute to our communities, but not if they are constantly battling a poverty crisis. We need not only disability without poverty but disability with possibility.' #FundCDB #CDB
ow.ly/NU3U50RgEp9

That is shockingly low. People with disabilities will continue to deteriorate / die early due only to lack of supports. Between this& provPWD assistence we are still dramatically below a healthy person's monthly minimum wage for 40 hour week week with much higher expenses

I've ended up with unexpected expenses from an infection where my cheap Amazon night back brace rubs. Infection hates me being in back brace now but no back brace=high pain. It's triggering #mca cuz higher dose antihistamine helps inflammation. Infections are so dangerous for me

Fighting hard for survival but reducing treatments to stretch out gfm$ &spending energy on time sensitive things is hard. Full update gofund.me/cff39173

#bcpoli #canpoli #MyalgicE #pwME #MECFS #pots #fibromyalgia #MEAction #pwd #disability #derb #immunedeficiency #antiviral

Sharing gfm & articles is so very much appreciated. Trying to reduce treatments to stretch out $ has me feeling so sick today. Advocacy call working on complaint re landlords ongoing harassment/tenancy risk now crushed me #pwme #disability #pwd #canpoli #bcpoli #Canada #meaction

Orthostatic Intolerance ( #OI ) in #MECFS and #longCOVID (and #fibro , #Lyme , #EDS ) - This video provides an overview of OI (also known as #dysautonomia and #POTS ), tips on how to diagnose, and LOTS of options for treatment. Treating OI changed our lives! youtube.com/watch?v=XYvHsb…

If you can help I AM MADELINE go here: gofundme.com/f/MadelinesMir…

Read more: ricochet.media/uncategorized/… via Simon Spichak (he/him), Ricochet Media (Sep. 2023)

#bcpoli #cdnpoli #chronicillness #Disability #MECFS #YVR

Strategizing about how to make gfm$ stretch is an exercise in impossibility. Thinking I'll reduce hyperbaric, but the misery factor of doing that is so high. Doing my best to keep my head in a good space. At least I got to look at cherry blossoms on the way to pain treatment

🔊NEW: Some ME experts are calling for a retraction of the recent NIH intramural study on #ME , claiming errors, research omissions, and potential bias.

betsy ladyzhets 📊 and I did a deep dive into it for The Sick Times. Give it a read!

thesicktimes.org/2024/03/19/err…

Madelinenerdfighter from the @IamMADELINEpod may die this month because British Columbia’s provincial government is refusing to cover essential health costs for her disabling illness.

My latest in Ricochet Media with thanks to Naheed Dosani G Peters 👩🏻‍🦽@mssinenomine.bsky.social and DisabilityAllianceBC.

ricochet.media/en/3991/Canada…