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This slide from a presentation by Prof Lynne Turner-Stokes is terrifying. They use ME/CFS as an example chronic illness in the beginning on a talk about “secondary gains” and psychological factors they falsely believe maintain the illness state. Absolutely awful 😞

I imagine if the same question were asked about a child with cancer, the public reaction would be overwhelming support for the family and the child. Where is our public support instead of being gaslit? #LongCovidKids

WARNING AND OUR EXPERIENCE WITH VAGUS STIMULATION DEVICE (tVNS): I have been seeing some posts in the #longcovid and #mecfs community discussing and willing to try one of these devices. We purchased one (just the device was €4000, with all equipment it was €5000. I know there

Anxiety kills nowadays! #longcovid Woman died of lung clots four days after being discharged from hospital with anxiety diagnosis – The Irish Times irishtimes.com/crime-law/cour…

THIS. This is why we see ME/CFS patients seeking voluntary assisted dying. This is how bad this disease is.

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My father had never shown any signs of anxiety that I knew of. However, he suddenly started to exhibit symptoms of anxiety. My husband insisted on getting a brain MRI to rule out a tumor. It turned out he had the most aggressive brain tumor, GBM (Glioblastoma Multiforme).

Welcome to #neurology 🧠 where the word "functional" infected how we practice, process and proceed...😫 and where many thousands of patients with #Dysautonomia, #MECFS and now #LongCovid are misdiagnosed with "functional neurologic disorder" or "anxiety disorder" 👎 and are

My 9 yo Son was “mentally ill” until an underlying physical source of inflammation was considered. Given this could be a simpler solution to the impossible CAMHS route, does this not deserve a mention The Times and The Sunday Times @DrElaineLockha1 ? #pans #pandas

OK, I started reading this recent review about PASC/Long Covid. I stopped when I saw a diagram labeling insomnia, fatigue, muscle weakness, and OCD as psychosomatic symptoms, even though they clearly have neuropathological mechanisms behind them. nature.com/articles/s4141…

My approach to my daughter's insomnia includes: ✔️ Never making her anxious about it. I reassure her that it's totally okay to just listen to her body, reminding her that I am always with her, right next to her. ✔️ Arranging her nutrition plan around her sleep cycle. I feed her

"This is a curse where you can neither die nor live," said by a 15-year-old girl. Imagine if she were your child. but you can all breathe a sigh of relief because it’s mine, not yours. If you keep ignoring them, this curse will be upon you all. Save our children! #LongCovidKids

People need to know how the proposed changes to disability benefits are dangerous. Zarah Sultana MP Vicky Foxcroft 💙 Disability Unit APPG for Disability Enable Magazine MagsDisabledGreen @TheChronicCollaboration (tagging anyone who may be able to advocate for change) ticcersunite.com/post/why-the-u…

Please share my friends fundraiser to get funds for PANS and tick-borne disease treatment gofundme.com/f/plz-help-me-…

Tourette Syndrome - The Ticcer's Guide is a handbook to support those living with Tourette Syndrome and their families. The book aims to empower Tourettic people, allow Ticcers' to accept themselves, and find management strategies that help. amazon.co.uk/Tourette-Syndr… #tourettes

My tics keep asking people if they want a free prostate exam which is a little awkward #Tourettes #tics #tourettesyndrome

Me: Has a condition where too much physical activity causes post-exertional malaise leading to headaches, increase dysautonomia symptoms, weakness, and mobility issues. Also me: Has a condition that causes involuntary movements that exhaust me and then leads to PEM. #lyme #pans

Follow & Repost to stand a chance to #win a copy of Blind Not Broken by Lucy Edwards. We have a book every day to giveaway. Every entry supports disabled awareness. (UK only) Our Wednesday competition closes tonight at midnight Lucy Edwards👩🏻‍🦯

My journey with chronic illness, infection testing, low-dose naltrexone, and the Buhner protocol: youtu.be/-x_UFzzxUo4?si…

10 years on from my autism diagnosis: youtube.com/watch?v=ZFbDDD…