Fliss Alc

@scott_scientist @SawyerBlatz Me too

@SawyerBlatz I’m way worse, I wish I could go back to day 1

I swear sometimes it feels like I’m the only one not getting better. I know it’s not true, but damn I’d love to find a SINGLE thing that helps. Nearly three years in and just as bad as day 1 🫩

@jacquirouse22 @SawyerBlatz Awww so pleased for your daughter! Wishing her all the best for uni. Binita Kane is a legend 🩵

@SawyerBlatz We are in the UK Dr Binita Kane at the private Long Covid Clinic in Liverpool got my daughter 90% better after 4 years through tripple therapy blood thinners & other meds it’s expensive but she was bedbound for years now off to University to study medicine still on heart meds

Does anyone with #LongCovid have a specialist that has helped them significantly? So tired of trying to figure this out on my own 😞

Prof. C Scheibenbogen has set up an international declaration calling for a significant expansion of biomedical research and drug development for ME/CFS and Long COVID. So far 65 experts have signed on, including Prof. Akiko Iwasaki. Press coverage + 👇

@elle_carnitine -They probably have a new (high) risk attached to vaccinations, if it’s an ME-type LC. - Do a home stand test/NASA lean test to check for OI and show the results to their dr -check out lc-sc.co.uk for amazing info for newbies (@angryhacademic 🙏)

Any recommendations for what to say to someone who seems to have developed moderate LC in the past few weeks? I’ve already mentioned to look out for PEM and the risks of reinfections. Anything else?

@useless_priest Was gonna question whether ppl actually reject this, but of course they do 🤦🏻‍♀️. But surely no one serious/worth listening to would reject this?

I don't think it's really possible to reject that ME is one of the outcomes of a COVID infection. Not only have people already developed ME after COVID, they've already died from that in severe cases. It's fine to have an alternative view but be respectful and don't downplay.

@CaroleBruce17 This is a lovely post, I’m sure you speak for many. Thank you Carol

I’m sure many #pwME are shy about posting on here, I was. I had nothing to say, everyone was more confident, less ill, clearer brains. I risked just tiny comments on other’s posts and then a bit more. I’m so glad I did. I’ve met, a lovely supportive #ME community who understand💙

🚨 Diabetics at risk 🚨 Type 1, and 2 diabetes account for 1 in 5 Covid deaths. Yet the UK govt plans to end NHS boosters for many vulnerable groups including diabetics. ❌ Risks have NOT gone 💰 It costs £100+ privately ✍️ Petition next, then ✨NEW blog #KeepCovidBoosters

ALERT 🔔 If you are a ♿️user, you can no longer book the ♿️space on @TPExpressTrains at ticket offices. Tried to do so yesterday & assistant went to back office to ring them. New policy is that booking can only be done by customer on 📞or app so you now have…1/

⚠️ Autumn Covid boosters will be denied for the first time to MILLIONS who are at higher risk of worse outcomes. ⚠️ We demand protection from infections! #KeepCovidBoosters 💉

Please support this campaign to ensure that Clinically Vulnerable people are included in this autumn's Covid vaccination programme. Hasn't there already been so much avoidable loss of life from this disease without current Government policy adding to it?

The current Chancellor of the Duchy of Lancaster is @patmcfaddenmp The UK Biosecurity Strategy is your gig. Can we have open-access covid wastewater monitoring data back, please? gov.uk/government/pub…

@CaroleBruce17 Phone for most things. Laptop for video appointments (so I don’t have to hold up the camera), and sometimes for typing longer emails etc

What device do people, especially #pwME, use most. Laptop IPAD or similar Smartphone? Which is easiest for what? Thanks.

🚨🩺😷🚨🩺😷 BREAKING! At last! In the UK, we have official guidance on the use of respirators (FFP3) vs Fluid Resistant Surgical Masks (FRSM) which has been prepared SPECIFICALLY FOR THE HEALTHCARE SECTOR. 🚨🩺😷🚨🩺😷

Some people were so ill I could only take a few frames before it became too much for them & I had to leave. #SevereME is devastating. #LivesWeCannotLive #documentaryphotography

Covid in a dialysis unit is a death sentence. This systematic review found that, of patients on dialysis infected with Covid: - 64% were hospitalized - 23% died Mandating respirators (N95-type+) in hospitals can prevent this. pmc.ncbi.nlm.nih.gov/articles/PMC95…

@lostsock Ps I know how hard that is when you’re already homebound 😔 Pps loving your replies to the eejits 🌟 Ppps sending you a big old dose of good luck and hoping for the best for you 🤞🏻

@lostsock Probably saying nothing new here but i would get antivirals if possible, and 2ndly rest proactively, rest harder and longer than you feel you need to - which i feel is something we all already know, and at the same time something we all benefit from being reminded of!

Would love some advice if anybody has any, because I am beyond terrified right now.

@JackHadfield14 This is great news! I’m curious about your number of healthy controls - how many will there be? And was that number arrived at based on statistical power predictions, or funding constraints? 🙃

Was only 2 days ago I was saying we’re 1 spot away from batch 4 competition, now we’re nearly half way through batch 5 🤯 The uptake for this test is truly amazing. We have also already secured Covid MAB patient, IVIG & GLP1 patients coming soon. Let’s bring on the analysis!

@JackHadfield14 @amaticahealth , wondering if you guys are doing any RNAseq on the same patients in rested vs crashed state? I guess w 2 sets of matched data from a single cohort, you might need a much smaller cohort than for sick vs healthy ppl?