Cristina kicking Long Covid @Fighting_LC Twitter profile | Pikagi

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Cristina kicking Long Covid

@Fighting_LC

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#LongCovid since Summer 2022. Doctor of Humanities. On Pause. Curious. Arty. Messy. A #Renegade50 with @RemissionBiome ! #TreatLongCovid #MECFS

Europe/UK

Joined June 2023

Don't wanna be here? Send us removal request.

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@Fighting_LC

Cristina kicking Long Covid

6 months

I want to tell you something wonderful that happened during Lockdowns. In March 2021 I was going through a hard time. I sat on my yoga mat and cried my eyes out. Only after I noted I was sat by the window as the afternoon fell with the light on. I thought 1/n

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@Fighting_LC

Cristina kicking Long Covid

6 months

I sometimes wonder if it was a pure coincidence that he wrote HI the day after I cried my eyes out, or if he had seen it and had found a way of reaching out, and was gracious about it. It doesn’t matter. There is a little star looking out for me ⭐️ We are never alone. ❤️ end/

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@Fighting_LC

Cristina kicking Long Covid

6 months

At some point I asked why he put the Hi on the window, and apparently someone down the street had done the same (I had seen it) so he was curious to try. Every time I feel alone I remember this, we all have a little star out there looking out for us. 💫

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@Fighting_LC

Cristina kicking Long Covid

6 months

“Oh no, all my front neighbours just saw that, urgh”. The next day this happened:

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@Fighting_LC

Cristina kicking Long Covid

6 months

I was taken aback. I had felt so alone the day before, and here it was, the universe telling me my community was there for me. I had to respond:

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@Fighting_LC

Cristina kicking Long Covid

6 months

Mark. That was his name. A total stranger that lived across the street and who brought me hope and smiles with just one word “hi” when I most needed it

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@Fighting_LC

Cristina kicking Long Covid

6 months

We lived across each other so we just walked down at the agreed time. He was a lovely 20-something who had just moved into the area, we walked along the park and the conversation flowed. We had a delightful Sunday morning hanging out.

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@Fighting_LC

Cristina kicking Long Covid

6 months

They asked what I did and we started a post-it window conversation. I must say I was impressed by their post-it sticking skills, mine kept falling and it was a whole project to make the words fit the space, as well as writing backwards!

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@Fighting_LC

Cristina kicking Long Covid

6 months

I said that I do research and managed a typo asking back what they do - turns out standing on a chair sticking post-its on the window is not as easy as it sounds, albeit fun!

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@Fighting_LC

Cristina kicking Long Covid

6 months

I was indeed, happy to meet him.

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@Fighting_LC

Cristina kicking Long Covid

6 months

They work in a special education needs school, and it was time we found out each other’s names! You gotta save words by this method of communication, so apologies if the directness doesn’t sound very British

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@Fighting_LC

Cristina kicking Long Covid

6 months

So he suggested we meet in person, how cool is that!

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@Fighting_LC

Cristina kicking Long Covid

6 months

How could I refuse?

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@Fighting_LC

Cristina kicking Long Covid

6 months

I introduced myself, and managed again another typo! I am not very good at this!

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@Fighting_LC

Cristina kicking Long Covid

6 months

A date was set.

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@Fighting_LC

Cristina kicking Long Covid

7 months

So far on MCAS treatment: - less fatigue - less migraines! - wake up feeling less like death - GOOD sleep every night - drove for the 1st time in 6 months!! Read fiction and an easy paper!!! I am in shock. #TreatLongCovid #mecfs @remissionbiome #LongCovid

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@Fighting_LC

Cristina kicking Long Covid

5 months

So… I decided to try Online Dating With Long Covid While You’re Housebound because who cares and whateva, and the first person I match with and have an interesting conversation with also has… #LongCovid 🤦‍♀️😂😂😂 how is this even possible, this is hilarious

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@Fighting_LC

Cristina kicking Long Covid

7 months

I am getting more support in figuring out and treating #LongCovid from fellow patients than from doctors. Their humanity is above and beyond ❤️

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@Fighting_LC

Cristina kicking Long Covid

6 months

@BillBottrell I don’t know him. Do you mean the story or the way it is written? (This is real, not fiction)

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@Fighting_LC

Cristina kicking Long Covid

5 months

This year will be my first Christmas alone and with Long Covid. Any tips?

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@Fighting_LC

Cristina kicking Long Covid

7 months

I highly recommend to watch @chydorina excellent and easy to follow videos on MCAS. I was advised to start with the basics, so this is the protocol I am currently following, points A to E. I have already been on a low histamine diet for 8 months now with the occasional H1.

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@Fighting_LC

Cristina kicking Long Covid

6 months

I had my #Renegade50 1-to-1 today with @IsabelRamirezRD and it was fantastic! I am blown away by how individualised and specific the @remissionbiome protocol is; it was the first time smo looked at my tests and gave me ACTIONABLE things to fix imbalances. #PwME #LongCovid #mecfs

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@Fighting_LC

Cristina kicking Long Covid

8 months

@tessfalor I keep getting told by doctors that “you need to walk more” ha, I WOULD LOVE TO WALK MY DEAR 😆

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@Fighting_LC

Cristina kicking Long Covid

10 months

@jubunnies I wish everybody showed up at my door wearing a mask! Good job! 😷

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@Fighting_LC

Cristina kicking Long Covid

5 months

Today I am just sick of it all. It’s relentless, there’s no day off. I do understand why others have committed suicide. My respect to them. Tomorrow is a fresh new day. #LongCovid #mecfs

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@Fighting_LC

Cristina kicking Long Covid

7 months

@chydorina I started with an H1, then H2 (famotidine) 10mg twice a day, then up to 20mg twice a day. I then introduced querticin, vit C and Vit D at a couple days intervals. Note this seems to be working for me, but you might need a different approach! Read widely and speak with your GP!

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@Fighting_LC

Cristina kicking Long Covid

7 months

Here is the full paper, kindly shared with my by @Michaeltikus

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@Fighting_LC

Cristina kicking Long Covid

6 months

Today, in #LongCovid land, I dragged myself out the door for blood tests for my @remissionbiome self experiment, only to give up and go back to bed

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@Fighting_LC

Cristina kicking Long Covid

6 months

@LingZhiTweet Yes to this!

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@Fighting_LC

Cristina kicking Long Covid

6 months

@BillBottrell @msp1678 Okay, I have to read it now! 😁😁😁

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@Fighting_LC

Cristina kicking Long Covid

8 months

I am utterly impressed with the support, care and commitment I have been receiving from the fantastic @remissionbiome team, as one of the #Renegade50 . I feel so lucky to be part of this community. Thank you all and to my fellow #Renegades ! #LC #mecfs

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RemissionBiome Community Science Project, organized by Tess Falor

Remission Biome is a citizen science, patient-led project of the non-profit, decen… Tess Falor needs your support for RemissionBiome Community Science Project

www.gofundme.com

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@Fighting_LC

Cristina kicking Long Covid

6 months

@dex3703 Sending love and hugs 💖

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@Fighting_LC

Cristina kicking Long Covid

10 months

@Lucy_Webster_ You can get bamboo straws online, they are great! I got some for a friend with cerebral palsy

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@Fighting_LC

Cristina kicking Long Covid

10 months

@agy_lena I have a family member who is a GP, and when I explained the spoons thingy and why I couldn’t meet her for coffee she said my disease was very philosophical 🙄

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@Fighting_LC

Cristina kicking Long Covid

7 months

This week in @remissionbiome : - sent Biomesight - fought with customs - lost said fight & sold a kidney to pay my dues - got Prodrome Glia - saw doctor and did blood tests! - started treating MCAS - got a rec for a doctor for reactivated CMV …. nap time. #LongCovid #mecfs

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@Fighting_LC

Cristina kicking Long Covid

4 months

So, we have met in person after a couple of video chats and… ☺️☺️☺️☺️☺️😍 things are looking good! 😊

@Fighting_LC

Cristina kicking Long Covid

5 months

So… I decided to try Online Dating With Long Covid While You’re Housebound because who cares and whateva, and the first person I match with and have an interesting conversation with also has… #LongCovid 🤦‍♀️😂😂😂 how is this even possible, this is hilarious

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@Fighting_LC

Cristina kicking Long Covid

9 months

@remissionbiome , my GP said YES!! 🤩🤩🥳🥳💃💃bring on Biome2

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@Fighting_LC

Cristina kicking Long Covid

10 months

@guardian This is offensive. Would you treat cancer with “exercise” and “therapy” ? 🤦‍♀️ do your research.

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@Fighting_LC

Cristina kicking Long Covid

6 months

@remissionbiome is learning, ordering, asking questions, chasing packages, fighting with customs, meeting others in the same boat, doc visits, bloods and poo tests, and I gotta say I am loving every minute of it and I haven’t even officially started #LongCovid #PwME #mecfs #PwLC

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@Fighting_LC

Cristina kicking Long Covid

6 months

This week in @remissionbiome : - translation, matchmaking, and lab shopping… all labs done! - email fights with Mr D. from UPS (he wanted me to declare a non-existent invoice to customs 🤨) - all antibiotics prescribed by my very patient Doc 😁 #Renegade50 #LongCovid #MECFS

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@Fighting_LC

Cristina kicking Long Covid

8 months

#liefdevoorc éline Today I am thinking of Celine, a life cut short not only by ME, but specially by the medical establishment that gaslighted patients for decades and did nothing to further treatments and improve quality of life. #MECFS #CureMECFS #WeNeedACureNow

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@Fighting_LC

Cristina kicking Long Covid

6 months

Want to know more about what @remissionbiome is all about? Here, María, a fellow #Renegade50 , explains it very well!

@_diatoma

María Richardson

7 months

A personal intro to @remissionbiome for friends, family, and, of course, social media. #RemissionBiome #ME #MECFS #MyalgicEncephalomyelitis

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@Fighting_LC

Cristina kicking Long Covid

6 months

I finally got my Covid BOOSTER! Yeay! This means I done everything I wanted to do before I can start Prep phase of @remissionbiome . #Renegade50 here I go! #LongCovid #Vacines #MasksWork #PwME #PwLC

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@Fighting_LC

Cristina kicking Long Covid

4 months

FUND CLINICAL TRIALS FOR LONG COVID AND I WILL BE HEALTHIER, WEALTHIER AND HAPPIER

@VictoriaAtkins

Victoria Atkins

@VictoriaAtkins

4 months

Work makes us healthier, wealthier and happier. We don’t think anyone’s potential should be written off because of ill health. Our new WorkWell service is designed to provide the support that people need to stay in work, or return as soon as possible.

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@Fighting_LC

Cristina kicking Long Covid

5 months

This year I am so so grateful for @remissionbiome , may many many remissions happen soon! #Renegade50

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@Fighting_LC

Cristina kicking Long Covid

4 months

Merry Christmas. It’s my first Christmas alone but my heart is so full. I am thankful to @remissionbiome @tessfalor and @IsabelRamirezRD as well as the #Renegade50 community for giving me hope. You all are the highlight of my year and bring me hope every day! #LongCovid #mecfs

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@Fighting_LC

Cristina kicking Long Covid

6 months

Okay #LongCovid Twitter, I got referred to an hematologist, what blood tests should I ask them for? #PwLC #PwME #mecfs #TreatLongCovid

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@Fighting_LC

Cristina kicking Long Covid

6 months

@DrMark_Faghy This is one of the most poorly written abstracts I have ever seen, not to mention the utter crap and nonsense it says. Who is the editor that let this through? Wow.

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@Fighting_LC

Cristina kicking Long Covid

6 months

@OnlineMathsT 😂😂😂😂 no, it’s not a love story ☺️ maybe in a cinematic version it will be!

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@Fighting_LC

Cristina kicking Long Covid

7 months

@chydorina @remissionbiome And thanks to you! ❤️ Thank you for your session on MCAS for the #Renegade50 , I was taken aback when you talked about how similar #mecfs and #mcas symptoms were. I saw my Doc 2 days later and got on the case!

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@Fighting_LC

Cristina kicking Long Covid

8 months

@LoriDTindall They could have just tested before hand 🤷‍♀️ but people refuse to do the simple things to keep others safe

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@Fighting_LC

Cristina kicking Long Covid

6 months

Excited to be part of Solving Long Covid History!

@mildTin

eIisa

6 months

And oh my gosh how can I forget - the Remission Biome N=50 cohort !

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@Fighting_LC

Cristina kicking Long Covid

8 months

@ClareGerada The only reason a patient would do that is if their GP hadn’t listened to them and taken appropriate steps, then they go look elsewhere. Have you considered that GP failings are precisely why people look for answers elsewhere?

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@Fighting_LC

Cristina kicking Long Covid

6 months

Today in #LongCovid land, I got confirmation my job is safe for another year. So hurry up world, WE NEED TREATMENTS NOW! Scientists, I beg you, please get us out of this sh*te hole in 12 months! 😁😁😁 sharpen your pencils, go get them

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@Fighting_LC

Cristina kicking Long Covid

8 months

@ChronicMyalgicE You need to walk more!

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@Fighting_LC

Cristina kicking Long Covid

8 months

@tiredguineapig Not exactly a charity, but @remissionbiome is doing amazing work and we are in need of donations! Here’s the link:

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RemissionBiome Community Science Project, organized by Tess Falor

Remission Biome is a citizen science, patient-led project of the non-profit, decen… Tess Falor needs your support for RemissionBiome Community Science Project

www.gofundme.com

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@Fighting_LC

Cristina kicking Long Covid

7 months

This week in @remissionbiome : - rest and digest - increased @nurosym use - continued with vagal prep, mcas treatment & tracking - retested CMV, great news, numbers looking good! No idea how that happened, was it the Chinese medicine herbs?! #mecfs #LongCovid

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@Fighting_LC

Cristina kicking Long Covid

10 months

@OnTapPhysio You need to exercise!

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@Fighting_LC

Cristina kicking Long Covid

6 months

This year for Christmas I would like Spoons 🥄 #LongCovid #MECFS

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@Fighting_LC

Cristina kicking Long Covid

7 months

@ConfedMatthew Me and sister found a wallet with €200 cash and a school card. We phoned the school, who contacted the guardian, who called to arrange delivery. It was her grandmother, relieved: the kid had just been paid for a summer gig and that money was for her school books 🥹

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@Fighting_LC

Cristina kicking Long Covid

4 months

@Drewhywhywhy @biomesight @remissionbiome 👏🏻 👏🏻 👏🏻 this is a fabulous outcome only possible thanks to the generosity of @biomesight and the @remissionbiome team!

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@Fighting_LC

Cristina kicking Long Covid

9 months

@savingmeredith We all need a sister like you Corinne ❤️

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@Fighting_LC

Cristina kicking Long Covid

5 months

@NeleHelena It looks like his long covid is the non-ME type, so the judge is still out on that one, still early days but great start!

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@Fighting_LC

Cristina kicking Long Covid

7 months

365 days of #LongCovid , made bearable by Insight Timer. In gratitude to all the teachers that kept me afloat, here are my favourite tracks for #rest , #breathing and the vagus nerve:

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@Fighting_LC

Cristina kicking Long Covid

5 months

@chydorina I think the additional updates are due to starting @remissionbiome prep! I have noticed less fatigue, less up and downs in symptoms and better sleep the last week, fingers crossed it keeps up and only gets better! Thank you for asking ✨❤️ #Renegade50

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@Fighting_LC

Cristina kicking Long Covid

7 months

I followed #LongCovid Twitter advice, and got a robe and a head turban drier thingy, I love it! Off the shower into the robe, no energy spent drying, and cosy!

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@Fighting_LC

Cristina kicking Long Covid

6 months

Thank you Danny, the only thing I disagree with is your vision of Long Covid Clinics in the UK: in my personal experience they are useless (I got a physiotherapist who taught me a breathing exercise, and that was it). I am housebound. Not good enough.

@Daltmann10

Danny Altmann

6 months

Boris Johnson may not believe in it, but long Covid is all too real – and underfunded | Danny Altmann

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@Fighting_LC

Cristina kicking Long Covid

8 months

@chrischirp @guardian There’s something fundamentally wrong with the NHS and it’s much larger than that - it’s the APPROACH. Other European countries (such as Portugal and Spain) have a PREVENTIVE approach to health (more screening, more immediate tests quicker) which saves money in the long term 1/2

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@Fighting_LC

Cristina kicking Long Covid

8 months

@ChronicMyalgicE Double whammy when you’re gaslighted by a loved one WHO IS ALSO A GP 😓

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@Fighting_LC

Cristina kicking Long Covid

6 months

@Ivi81 I haven’t yet met a doctor that knows more of LC than I do, and believe me, I have seen quite a few of them!

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@Fighting_LC

Cristina kicking Long Covid

8 months

Today I did 3 emails and 1 phone call (all medical admin) please clap 👏🏻 👏🏻 👏🏻 #LongCovid #TreatLongCovid #mecfs

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@Fighting_LC

Cristina kicking Long Covid

8 months

These news made my day! @remissionbiome are making history! Thank you profoundly to the generous donors, I look forward to a healthier future for so many people. Gratitude

@remissionbiome

RemissionBiome MECFS/LongCovid Self-Experiment

@remissionbiome

8 months

🤩 Hello, #RemissionBiome . 📣We are thrilled to announce that we just got a $250k grant from @VitalikButerin 's Kanro Foundation AND a private donation of $45k! @tessfalor @chydorina @IsabelRamirezRD

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@Fighting_LC

Cristina kicking Long Covid

9 months

@ChadGoldsmith @luckytran @joaquinlife Gee! That is blatant discrimination. I would not want to work for an employer who would ask this

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@Fighting_LC

Cristina kicking Long Covid

6 months

Today, I found out I have Very Long Covid. The cheeky bastard.

@healingfromlc

Celine

6 months

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@Fighting_LC

Cristina kicking Long Covid

10 months

@davidtuller1 @arisonsned @guardian @rachela_hall @keithgeraghty No. Her job is to offer a balanced unbiased view. She did not do that. Her job is to research the topic. She did not do that. Her job is to inform. She did not do that.

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@Fighting_LC

Cristina kicking Long Covid

7 months

@michalek_lisa @healingfromlc Yes. My lung cancer in my 30s was a walk in the park compared to this sh*t

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@Fighting_LC

Cristina kicking Long Covid

6 months

I have almost all products for the @remissionbiome prep phase and can’t wait to get started, but currently tweaking meds to find the right MCAS combo. Feel like a kid with a box of candy I can’t touch 😅 #LongCovid #mecfs #TreatLongCovid

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@Fighting_LC

Cristina kicking Long Covid

8 months

Hi @gezmedinger , have you seen the fantastic work that @remissionbiome are doing, and when are you interviewing them? 😜🤓 Have a great weekend! #LongCovid #TreatLongCovid #MECFS

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@Fighting_LC

Cristina kicking Long Covid

7 months

@gezmedinger And it’s so difficult to get other people to understand that trade off

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@Fighting_LC

Cristina kicking Long Covid

8 months

@chydorina @NeuroliteAG @remissionbiome Wow, that would be fantastic!

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@Fighting_LC

Cristina kicking Long Covid

6 months

@tink_ina @Dakota_150 @remissionbiome of course! 😁

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@Fighting_LC

Cristina kicking Long Covid

10 months

@guardian , are you going to apologise to #MECFS patients about this piece of nonsense and retract this offensive article? You should.

@guardian

The Guardian

10 months

Chronic fatigue guidance discouraging exercise is flawed, say researchers

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@Fighting_LC

Cristina kicking Long Covid

10 months

@HarryBoby4 I have this unwavering belief that I will make a full recovery (no idea where it comes from). It keeps me going ☺️

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@Fighting_LC

Cristina kicking Long Covid

5 months

I have just reviewed the 32 clinical trials for #LongCovid in the UK (in the NIHR website) and there isn't one I am excited about. What a waste of money and resources #PwLC #PwME #TreatLongCovid

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@Fighting_LC

Cristina kicking Long Covid

7 months

This is so important, and I keep reminding myself of that

@_diatoma

María Richardson

7 months

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@Fighting_LC

Cristina kicking Long Covid

8 months

@CaroleBruce17 What pisses me off about all these studies is that none of them are actually working on a treatment/cure. Like dude, we are desperate, I don’t care who gets more affected, find us a bloody cure!

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@Fighting_LC

Cristina kicking Long Covid

6 months

@emmiskyten @remissionbiome OMG WELCOME TO THE BEST CLUB EVER!!! So happy you joined us! Have you been put into a group yet? I hope you join our International group 😄😄😄😃😃😃 SO EXCITED to have you with us!

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@Fighting_LC

Cristina kicking Long Covid

10 months

@tessfalor @remissionbiome @RenegadeRes @chydorina @IsabelRamirezRD @mervetepePhD @KatBoniface I am very excited for them! I am on the “future” group and very looking forward to that. Thank you for your work! 😊

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@Fighting_LC

Cristina kicking Long Covid

4 months

The joys of traveling with Long Covid

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@Fighting_LC

Cristina kicking Long Covid

5 months

This. My GP says “oh you need to speak with your LC Clinic” and the physiotherapist (no joke) at the LC Clinic says “Oh you need to speak with your GP” - noone takes responsibility, it’s a joke.

@PhillyPhile215

Melissa Mazur

@PhillyPhile215

5 months

I agree. LC Clinics have become a way for doctors/specialists to ignore #LongCovid and act that it isn’t their problem to understand. Until doctors start realizing that they are not silos (which is a culturally shift desperately needed), the LC model won’t be effective.

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@Fighting_LC

Cristina kicking Long Covid

6 months

Went to hospital for an appointment and got a wheelchair for the first time to get around the hospital. I can’t tell if my #LongCovid is worse, or if I KNOW BETTER to not walk those endless corridors to appease the PEM gods. #PwLC #PwME #mecfs

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@Fighting_LC

Cristina kicking Long Covid

4 months

Me and my bed are spending New Years Eve together! Happy New Year and see you on the other side ! Night night.

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@Fighting_LC

Cristina kicking Long Covid

6 months

@tessfalor Lee is so nice and friendly! He was as excited as I was when my package cleared customs with no fees!

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@Fighting_LC

Cristina kicking Long Covid

6 months

@HeartlandRaised I am so sorry 🤍🤍🤍

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@Fighting_LC

Cristina kicking Long Covid

8 months

Update. I DID NOT GET A MIGRAINE. I REPEAT, NO MIGRAINE. THIS IS NOT A DRILL Now, does this mean my #mcas is better controlled? Is there more chocolate cake on the horizon? 🧐

@Fighting_LC

Cristina kicking Long Covid

8 months

Eating chocolate cake and watching Desperate Housewives. Living the #LongCovid dream (I will probably pay for the chocolate cake with a migraine later thanks to #MCAS but after months of no chocolate I caved)

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@Fighting_LC

Cristina kicking Long Covid

3 months

Okay peeps, it’s official, I have a boyfriend 😍 we only met in person twice and have been apart for 5 weeks now as I am in another country but hey ho 💙

@Fighting_LC

Cristina kicking Long Covid

4 months

So, we have met in person after a couple of video chats and… ☺️☺️☺️☺️☺️😍 things are looking good! 😊

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@Fighting_LC

Cristina kicking Long Covid

9 months

@Gronnet Can I be your patient please

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@Fighting_LC

Cristina kicking Long Covid

6 months

This is my dad every eve at dinner table ❤️ “Where are my pills?” “Did I take my pills?” 😂

@spoonfulofhan

𝕳𝖆𝖓𝖓𝖆𝖍 🖤

6 months

Did I take my medicine, or do I just think I took it? : A chronic illness tale

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@Fighting_LC

Cristina kicking Long Covid

10 months

@WHO_Europe We are all managing, some better than others, or some days better than other days. What we are not getting is TREATMENT. #TreatLongCovid

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@Fighting_LC

Cristina kicking Long Covid

6 months

🤣🤣🤣🤣🤣🤣🤣 No.

@BJEWB

Brooklyn

6 months

Hahahahaha no.

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