Darren Randon
@DarrenRandon
Community Builder - Creative Facilitator He/Him/His All views here are my own #pwME
Thank you all for your support, we appreciate it so much! Exhausted atm, will provide updates when I can.
My friend, Savannah, a 23yo woman with severe ME/CFS, is currently in a London hospital being denied the care she needs after being told to seek psychiatric help instead. Please help - sign the petition. change.org/SaveSavannah @MEAssociation @MEActNet @WorldMEAlliance
Stay cool! Here are tips from our members with lived experience for managing temperature and heat. 1/2
More practical advice for managing temperature and heat from lived experience here. 2/2
Just signed up
OMF StudyME is a free global recruitment tool that connects individuals interested in participating in research studies with the researchers conducting them. Sign up to help accelerate research into #MECFS and #LongCOVID 👉 omf.ngo/studyme.
EXPOSED: The Secret Israel Plot to Ban Palestine Action @Lowkey0nline
Please watch this to understand how difficult the financial situation is in Gaza& how it works & why people need a lot of donations.
The truth about the welfare concessions The government says existing claimants are protected. But if your condition improves and you have to reapply — or if you become disabled in future — you’re out of luck. That’s not reform. It’s rationing. People with fluctuating…
Sign up for the Prose Poetry masterclass taught by award-winning poet Nick Makoha. academy.lolwe.org/class/prose-po…
The government has announced a two-tier benefits system. Under its plans, you can keep your benefits if you are disabled now, but not if you become disabled tomorrow. How is that fair? A reminder: The Independent Alliance stands by its own amendment, and we will not back down.
Had the pleasure of speaking to @palpulse about the work of @Pal_action and the continued struggle of the #Filton18 - I also very much recommend that everyone watch the excellent film To Kill A War Machine by @TRCdocumentary which you can now watch online.
Dr @asimcp suggests steps to support @Pal_action and Direct action to end the Israeli Genocide in Gaza.#GazaGenocide #PalPulse
In a piece written for 'The Conversation', Dr. Annesley, currently working on research funded by ME Research UK, emphasizes the physical nature of the ME/CFS. Read more: tinyurl.com/yuepfxaj #MECFS #MyalgicEncephalomyelitis
The UK weather has been hot, and those with conditions exacerbated by heat are likely struggling. One such example is orthostatic intolerance, common in ME/CFS, where the body fails to compensate for an upright position. Read more: bit.ly/4kSdpqZ
Reading this article in full gave me a panic attack; my heart is pounding, my lungs feel crushed... I've been documenting atrocities my entire adult life; this cruelty is in a league of its own Starving children, luring them with crumbs, then gunning them down with machine…
Completely unacceptable
[Thread] @addisonleeuk are providing a so called #accesstowork when in fact their service is not inclusive/accessible. Assisted Black Taxis are not always wheelchair accessible. However, there are marketed as such. 1/many
This. And they don't understand the impact it has on us, especially when it happens so frequently over such long periods of time.
Generally, people with #MECFS experience continuous medical gaslighting and lack of understanding.
I'm excited about this #LongCovid trial! If you meet the eligibility criteria, please consider enrolling - more sites nationwide to be added:
A new #LongCovid clinical trial is enrolling for bezisterim, an investigational anti-inflammatory drug that crosses the blood-brain barrier. It has been studied in neurological & neurodegenerative disorders, including Alzheimer’s & Parkinson’s. 1/
A new #LongCovid clinical trial is enrolling for bezisterim, an investigational anti-inflammatory drug that crosses the blood-brain barrier. It has been studied in neurological & neurodegenerative disorders, including Alzheimer’s & Parkinson’s. 1/