Kirst

Neighbours got back from hol at 4am. The constant running around whilst stamping has begun. How can you run around your house literally 24/7? Even working from home? How are you getting any work done? We’ve told them twice and council will do FA so that’s a pointless route 😭

Please sign #MECFS

Can anyone recommend some decent compression socks with zips that actually work please? 🇬🇧 #POTS

This is the Japanese Puffer Fish - one of #nature's greatest artists. To grab a female’s attention, he creates something that defies belief. Nature is more amazing. Protect it. #ActOnClimate #climate #energy #rewilding #biodiversity

Wow. In under 24 hours, 200,000 people have signed up to build a real alternative to poverty, inequality and war. Something special is happening - be part of it at yourparty.uk.

As we recruit healthy controls, we are trying to understand the age distribution of people with Long COVID and ME/CFS What age group do you fall in?

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

For the next few weeks I’ll share stories from my photo project about #MECFS Before Hillary became ill she was an entrepreneur, running companies, sponsoring motor racing, making music and living a full life. Updates on exhibition & book: tinyurl.com/58khuv8z #MEAwareness

Lots going on today with ME coverage! 📺 📻 Some coverage we’re expecting today (pending news schedules): - Our co-founder @KarenLHargrave due to be featured on Radio 4 World at One between 1-2pm - #ThereForME Ambasador @BinitaKane due on Channel 4 News between 7-8pm

#TheAcidTest2? People with Long COVID and ME/CFS, would you want to participate in a study using continuous lactate monitors? The monitor would be similar to the CGMs available now & would be provided free. It would require daily symptom tracking & wearing the sensor for 30…

TW Suicide Another prevention of future deaths reports has been published after a suicide in the M.E community last year. How many of these reports will be published but not acted upon?

I have #SevereMECFS. I can no longer speak. I am bedridden. Today it is 5 years 8 months since I was outside. (2069 days) #MECFS needs a biomarker in order to get a FDA approved treatment. Please donate to BioQuest. #philanthropy #socialgood omf.ngo/me-cfs-new-bio…

When worrying about your future you never think that becoming chronically ill could be a possibility. I can’t believe this is my life at 34. I just want to live again, even if it’s only in my own home.

I can't stop thinking about Bridget. I can't believe the world doesn't care about us suffering, us dying. She and everybody else should've received help and lived a long and healthier life. I can't believe an illness this severe just goes unnoticed by the whole world.

E Sussex NHS Trust considering trying to evict Karen from hospital which would be a death sentence. We posted an update on our petition on 20 July. To read it scroll down our petition page to UPDATES. Save Karen Gordon (…) chng.it/CGMQTDVvRb Please share. Thanks K H & M

A reminder of what the global research output on #MECFS looks like, when compared to other diseases 😳 In the US at least, each of these other diseases now has a lower burden (measured in DALYs) than ME/CFS - and yet ME is barely off the floor. #MECFS #LongCovid

⁉️📣 Calling those with #LongCOVID, #MECFS, or #POTS who have tried Guanfacine — how did your symptoms change overall? If you experienced improvements or worsening, let us know which symptoms changed for you in the comments. Please share 🙏 @patientled @ahandvanish…

#MECFS survey 👇