Cristina kicking Long Covid 🍉

I had lung cancer. That was a walk in the park compared to #LongCovid

@PhillyPhile215 I’ve taken ivabradine and does exactly that, lowers HR. Does nothing else.

Anyone in the community participate in this trial? My suspicion is that their outcomes measurements did not capture the improvements patients can have from IVA (and this might be another eg of how not including patients in study design/implementation caused GIGO)

For those who relied on Dr Taylor for prescriptions, this thread will share other options: 1. For LDN the best source is to get it prescribed by Dickson’s Chemist here shop.dicksonchemist.co.uk/the-ldn-privat…

@surf4children Hi Danilo, good luck! I am a researcher with LC (in humanities). If you need an external pair of eyes to read for typos/edits, I would be happy to! DMs are open.

Good morning, when I say "I'm doing my best to apply to funds for #longcovid #mecfs" this is what I mean :) horizon applications mood on! Who is wishing me luck?

I’ve spent the past weeks talking to #ME patients and carers in Wales. There is a spectrum of severity, but there are thousands in dark rooms across the country, unable to walk or talk. Tomos is one of them. Watch/listen/read on BBC Wales news today ⬇️ bbc.co.uk/news/articles/…

@OT_Skiff @cfs_jo Hi! 👋🏻 Would you be happy to let me know via PM how it goes? I have been in touch with him via email and now doing 3 months of no Bs before testing and appointment with him. I would love to hear your thoughts on him!

@cfs_jo Glad it's not just me 🙈 I've got a virtual appt with Dr Klein on Weds

I really need a B12 doula. Someone who will walk beside me as I start taking it. Not on here, but in real life. I want them to research, source and buy everything for me (so I know it’s safe). Feel such a wimp cos people much more sick than me have worked out how to do it. #ME

@Yrrepmot I meant, scientifically!

@Fighting_LC Looks like it! :)

Wait a second. I think this Hydroxy B12 is doing something. I don’t want to seem over dramatic but I think I’m experiencing another strong response. This is exactly how I felt 8 weeks ago when I was combining it with folate. 4 days ago I did an injection and really didn’t feel much. Took some mega doses of folate & potassium and now I get a response… Sudden rush of clean energy and feeling like my body and brain is waking up. Eyes are open and I can think and type much more clearly. Also a sense of inflammation being quelled, like the fire has been put out… I’ve also just read on Reddit noise sensitivity can be a reversing out symptom.. 🤯 #MECFS #B12

@cfs_jo Hi Jo, I see you cause I feel the same. I can recommend Dr Andrew Klein, he is a B12 specialist and his online consultation is £200 then £150 for follow ups. He will guide you through the process! cambridgeironandb12.com Binita Kane has a video with him in her YT channel too.

@annehainestyrer @Naomi_D_Harvey @1goodtern @joimonki Hi! 👋🏻

@1goodtern @joimonki I’m pretty sure I have LC. I would love to find a LC community here on Twitter.

If you are covid conscious, if you have Long Covid, if you care about people with Long Covid, I want to follow you - please leave a comment, and I'll work through and follow every comment I can see. #LongCovidAwarenessDay

Edinburgh Castle lit up tonight for Long Covid Awareness Day. A huge thank you to the Castle team and Helen at Long Covid Kids for helping shine a light on Long Covid. #LongCovidAwarenessDay #LitForLongCovid

Today, 15 March, we mark International Long Covid Awareness Day. For many, the effects of COVID-19 continue long after the initial illness. The Clocktower will be illuminated in teal green this evening as a symbol of awareness and support.

Almost 6 years ago I caught COVID. I have spent the last half of my twenties bedbound. I need a wheelchair for occasional Dr appointments. My doctors have told me my quality of life is similar to that of an end stage cancer patient. We need treatments. #LongCovidAwarenessDay

Today is #LongCovid awareness day and we wouldn't need this day so hard if healthcare would have taken things like #MEcfs #POTS #MCAS etc seriously in the past. We're here because of medical misogyny, because of ableism, because the things covid can lead to were never properly 1/

@southevropa Queremos receita!

Não preciso ir a Portugal. Eu faço pastéis de nata em casa ♥️🇵🇹🤭

@AetherFox_ @elizaclove This happened to one of my friends, her husband of over 20 years left her

When doctors tell a patient it’s all in the their head, it doesn’t just threaten that person’s body; it threatens their relationships. Family stops believing them. Relationships are strained. They lose financial support. They might even lose their home. They lose their world.

@elizaclove Yep! I’ve gained 10kg in 3 years of LC/ME. Now that I am more on the mild/moderate side, I got a nutricionist (online), and made some adjustments to my diet… it is slow!

It is so hard to lose weight with ME! If I go into a calorie deficit my symptoms get worse. I can’t exercise to burn off calories. I’m struggling to get back to a healthy BMI. I’m tempted to go on a GPL1 but scared of the side effects that could worsen my condition. 😩

@elizaclove Wooooooooooot?! 🤦‍♀️

@Fighting_LC I had one nurse drop the needle on the floor and then try to use it, I made her change it. Terrifying!

Blood tests in Portugal: - nurse wears gloves - disinfects the skin area Blood tests in the UK: - no gloves - no disinfectant Just stick them with the pointy end! #LC #LongCovidAwarenessMonth #MEcfs

@Nick_Wellings Hi Nick, what benefits did you notice with symprove?

Day 4 of a tablespoon a day of Zoe Daily 30. Not noticed too much difference. I had more noticeable result with Symprove. But I'll keep going. It's a good supplement in theory.

Hey, UK 🇬🇧 The Face Mask Store has “expired” respirators and they are giving them away free + shipping. 😷