Nikki S. @NikkiS_MCSFS Twitter profile | Pikagi

Pikagi

Nikki S.

@NikkiS_MCSFS

1,071

Followers

1,143

Following

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2,023

Statuses

Me?…Forensics, furry friends (especially Labradors!) & some creativity! Founding Member @long_covid . Views my own. . #LongCovid #FBLC

Berkshire, UK

Joined July 2021

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

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@NikkiS_MCSFS

Nikki S.

4 months

🎥 I was getting so fed up seeing such unrealistic images used to represent those of us with #LongCovid so I created 2 videos, 1 of which I presented this week to sites involved in an upcoming study to hammer home why research to #TreatLongCovid is so important. #ThisIsLongCovid

@long_covid

Long Covid Support 🌍

4 months

📣1/2. Many stock images used in the media and on healthcare websites to represent p/w #LongCovid are far from realistic and fail to communicate the seriousness of the condition. 🎥 See our 2 videos. Thank you to everyone who shared their experiences! 💖 #ThisIsLongCovid

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@NikkiS_MCSFS

Nikki S.

6 months

1. 🧵 I was at a get-together at a friend’s house. Someone asked how my #LongCovid was and others started listening. Someone else then said their husband has it. Then another said their sister-in-law hadn’t been right since having #Covid but they’d only just linked it…

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@NikkiS_MCSFS

Nikki S.

2 years

Things NOT to say to people with #LongCovid : - Aren’t you better yet? - You just need a good night’s sleep - Are you anxious? - It’s all in the mind - You’ll feel better if you lose some weight - Increase your exercise - You’re that age, it’s probably the menopause What else?

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@NikkiS_MCSFS

Nikki S.

2 years

I have been diagnosed with a dilation in my aorta near my heart. I have had #LongCovid since #COVID19 infection in Feb. ‘20. Has the virus caused a weakening in the aortic wall (we know it affects the endothelium) and LC continues to wreak havoc in our bodies? #TreatLongCovid

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@NikkiS_MCSFS

Nikki S.

2 years

People with #LongCovid since the 1st wave (not hospitalised) have a wealth of data/info. on their condition yet are often ignored by researchers as no #Covid19 tests back then. Surely there is much to learn from those who have had a novel illness the longest. #TreatLongCovid

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@NikkiS_MCSFS

Nikki S.

2 years

Just 1 of many ridiculous comments I had today from a Respiratory Physio who my #LongCovid Clinic sent me to: “You’ve had a chest x-ray haven’t you? That would’ve shown up any problems.” I mean, really?!?! Education on Long Covid is still hugely lacking. #TreatLongCovid

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@NikkiS_MCSFS

Nikki S.

2 years

How many people with #LongCovid have those days when they feel: “I can’t do this anymore”? #LongCovid #TreatLongCovid

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@NikkiS_MCSFS

Nikki S.

6 months

4. 🧵 So I sat with her Dad, directed him to various resources and talked in general about #LongCovid . They were so grateful as their daughter had been given no advice by her GP or LC Clinic. The question is… why the hell not?! … #CureLongCovid

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@NikkiS_MCSFS

Nikki S.

5 months

1/7🧵 It’s incredible how many people I know who have had #COVID19 in the last few months and I hear subsequently say that they are now better/recovered/back to normal… and then they add a “BUT”. #LongCovid /

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@NikkiS_MCSFS

Nikki S.

6 months

10.🧵So THANK YOU, to all who support others whilst on their knees themselves, and to those who push the research despite their peers looking down on them, and to the fantastic #LongCovid community who hold each other up and continue to speak out. We are #StrongerTogether 💜

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@NikkiS_MCSFS

Nikki S.

6 months

5. 🧵So many people have #LongCovid - it often takes one person to speak up before others are comfortable talking about it - and although we currently have no cure there are things that can be done & medications prescribed that can help lessen the impact…

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@NikkiS_MCSFS

Nikki S.

2 years

2 years ago today my 1st symptoms of #Covid19 began. Today I still have: - Significant Breathlessness - Tachycardia - Fatigue - Joint pain & stiffness - Cognitive issues - & more #LongCovid still greatly impacts my home, social & work life. #TreatLongCovid @long_covid

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@NikkiS_MCSFS

Nikki S.

1 year

Today is #LongCovidAwarenessDay . I’ve had #LongCovid for 3 years and there are several things I am still unable to do. One thing I really miss is having long walks with my dog. It gave me that time out and brought peacefulness in. #TreatLongCovid @long_covid

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@NikkiS_MCSFS

Nikki S.

6 months

2. 🧵Then another said their relative had a stroke after having #Covid and has never really recovered. Someone else’s daughter never recovered from Covid and when I last saw them 6 months ago she had had no healthcare so I gave them some general information… #LongCovid

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@NikkiS_MCSFS

Nikki S.

6 months

9. 🧵 Well I can’t think of a better illness to try to get to the bottom of - one that’s destroying millions of lives, causing mass disability, hammering health services, decimating workforces, demolishing the economy, stealing education and massacring childhoods… #LongCovid

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@NikkiS_MCSFS

Nikki S.

6 months

3. 🧵She since developed typical symptoms of #PoTS . GP referred her to a #LongCovid clinic who spoke to her 3 weeks ago. She is waiting for a TTT, appointment is in 3 months’ time. BUT she was given no advice by her GP or LC clinic to try to help her symptoms whilst she waits…

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@NikkiS_MCSFS

Nikki S.

6 months

6.🧵Yet so many continue to struggle alone or whilst they wait for appointments. If it wasn’t for charities such as @long_covid providing support to thousands, advocating for appropriate care, pushing for research, and much more, how much worse would things be?… #LongCovid

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@NikkiS_MCSFS

Nikki S.

6 months

7. 🧵 And there are other #LongCovid charities/organisations too, such as @LongCovidKids , working hard whilst ill themselves, not giving up, constantly pushing for what is needed…

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@NikkiS_MCSFS

Nikki S.

6 months

8. 🧵There are some researchers too who are determined to find answers, despite being looked down on by other researchers because they are focussing on #LongCovid rather than a ‘sexier’ field of research…

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@NikkiS_MCSFS

Nikki S.

5 months

Anyone else with #LongCovid get fed up seeing research papers come out about symptoms at, for example, 12 months or 18 months? How about keeping up with those ill since the 1st wave…plenty of data available from those us who have been ill for nearly 4 years now?! #CureLongCovid

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@NikkiS_MCSFS

Nikki S.

5 months

@royalhospital So by that logic - speed limits and seat belts have had a huge impact on reducing collisions, deaths and serious injuries, so let’s get rid of them!! 👏👏👏🤦🏻‍♀️

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@NikkiS_MCSFS

Nikki S.

8 months

At #CovidInquiry , Prof. Graham Medley (Chair at SPI-M): “We knew from the outset there were likely to be post infection sequelae” @long_covid @LongCovidSOS @LongCovidKids #LongCovidGroups #LongCovid #WeNeedAnswers #LongCovidLivesRuined #LongCovidRuinedMyLife

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@NikkiS_MCSFS

Nikki S.

5 months

1/3 🧵 Had a hospital appointment today and wore my @long_covid t-shirt. Walking down a corridor a member of Healthcare Staff stopped me and ask about the t-shirt, so I told her a bit about our charity./ #LongCovid

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@NikkiS_MCSFS

Nikki S.

2 years

2yrs+ since #Covid19 & today I have significant breathlessness, joint pain/stiffness, tachycardia, sharp stabbing in heart, fatigue, brain fog etc.. Waiting for results of heart CT from 6mnths ago (no reply to chasers). It’s exhausting. This is my #LongCovid today. What’s yours?

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@NikkiS_MCSFS

Nikki S.

3 months

🧵1/8. 🎂 4 years ago I was sat eating a meal and realised I didn’t feel quite right - my face was tingling, my heart was racing and I fainted. I then developed flu-like symptoms. That was the start of my #Covid19 hell. #LongCovid #CureLongCovid

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@NikkiS_MCSFS

Nikki S.

3 years

An email I had: “I honestly had no idea that kids got long covid, that was a big shock & I work in the health sector! Spoke to friends/family & not one of them had even heard that kids get long covid. How is this not a national news story?!” Exactly. #LongCovid #LongCovidKids

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@NikkiS_MCSFS

Nikki S.

5 months

@long_covid I’ve heard directly from some clinicians that they are having to re-write referral letters so that they include all relevant symptoms but omit reference to #LongCovid in order to get the referral accepted. Awful patient discrimination.

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@NikkiS_MCSFS

Nikki S.

5 months

3/3 🧵 When you are exhausted, still struggling after nearly 4yrs of #LongCovid , that hug & those words mean the world. So to everyone who continues to raise awareness of this cruel condition, who advocate for better care & relevant research, & who support others… thank you! 🫂

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@NikkiS_MCSFS

Nikki S.

5 months

2/7🧵 I was talking with a friend yesterday who had #COVID19 several weeks ago and said she is back to normal BUT is surprised if she does a lot in a day she feels “a bit rough” for the next few days - fatigued, she keeps having sore throats and “doesn’t feel right”. #LongCovid /

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@NikkiS_MCSFS

Nikki S.

3 months

4 years of #LongCovid and still having to make frequent decisions such as whether I have enough energy to wash my hair. #LongCovidSucks

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@NikkiS_MCSFS

Nikki S.

5 months

5/7🧵All these people were surprised they actually hadn’t fully recovered weeks/months after #COVID . They all know I have #LongCovid , nearly 4 years of it, but maybe as it’s been so severe for me they don’t relate their ongoing issues to also being due to damage caused by Covid./

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@NikkiS_MCSFS

Nikki S.

8 months

At a UK webinar this week, this slide was shown by a HCP from a NHS #LongCovid service to explain their tiered patient pathway - it’s based on patients’ “self-efficacy” and “willingness to change/engage”. I mean, WTF!!! #TreatLongCovid

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@NikkiS_MCSFS

Nikki S.

5 months

6/7🧵The impact #COVID19 has on the population is vast, yet many people seem quite happy not to take any action to reduce their risk of catching a Hazard Group 3 pathogen. SARS-CoV-2 is in the same hazard group as HIV and Rabies. #LongCovid /

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@NikkiS_MCSFS

Nikki S.

5 months

7/7🧵So mask-up people! Rates are again rising - latest ONS figures show 1 in 24 people in England and Scotland currently have #COVID19 . And #LongCovid is a cruel, debilitating condition. You really don’t want to become one of the “BUTS”. #LongCovid

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Nikki S.

5 months

4/7🧵Someone else I know who’s extremely active, has had #COVID three times, says he’s “all back to normal… BUT my brain, I can’t remember words”. #LongCovid /

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@NikkiS_MCSFS

Nikki S.

5 months

3/7🧵 Spoke to someone else who had #COVID19 months ago, who had said was “all better… BUT” she now gets breathless when walking and gets tired a lot more now if she’s had a busy day. #LongCovid /

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@NikkiS_MCSFS

Nikki S.

3 years

#LongCovid is shit!!! 18 months after #covid19 and today = Breathlessness Crippling joint pain Fatigue Headache Tachycardia Brain fog Afternoon nap Nearly fell down an escalator as I momentarily couldn’t figure out how to make my legs work properly when I got on it!!

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@NikkiS_MCSFS

Nikki S.

5 months

2/3🧵She told me she’d tried to tell people about #LongCovid from early in the pandemic but people didn’t believe her. She asked more questions so I showed her our website and shop, as she said she wanted to buy a t-shirt. She then gave me a huge hug and simply said “Thank you”./

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@NikkiS_MCSFS

Nikki S.

9 months

2 year study of p/w #LongCovid : - only 26 (7.6%) recovered - recovery less likely with muscle pain, impaired attention, dyspnea, tachycardia “Recovery is extremely rare during the first 2 years, posing a major challenge to healthcare systems” @long_covid

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Determinants of the onset and prognosis of the post-COVID-19 condition: a 2-year prospective...

Preexisting medical and socioeconomic factors, as well as acute COVID-19 symptoms, are associated with the development of and recovery from the PCC. Recovery is extremely rare during the first 2...

www.thelancet.com

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@NikkiS_MCSFS

Nikki S.

2 years

@Azeem_Majeed Wow. And there I was at an on-line event yesterday where someone from the NHS was going through all the things that are being done for patients with #LongCovid , including the 90 Long Covid Clinics!

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@NikkiS_MCSFS

Nikki S.

1 year

@doctor_oxford Spot on. Dad died alone in hospital in lockdown (not with Covid). Mum had to take items for him to the ward door, with him a few feet away, but wasn’t allowed in. Will never forget her brutal sobbing saying “I always promised him I would be with him”, and that still haunts her.

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@NikkiS_MCSFS

Nikki S.

4 months

Nearly 4yrs of #LongCovid . Feel awful 1st thing in the morning, usually improve a bit once up & moving. Tend to improve more through the day unless I do too much/don’t take breaks. It’s a fine balance. Still nowhere near pre-Covid self. It’s as if my body is poisoned every night.

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@NikkiS_MCSFS

Nikki S.

2 years

Have Chris Whitty and Patrick Valence been told not to mention #LongCovid ? The absence of any mention of this serious, mass disabling condition is downright negligent. @CMO_England @uksciencechief @BorisJohnson @Keir_Starmer

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@NikkiS_MCSFS

Nikki S.

2 years

@dianaberrent @PsychToday Who knew blood clots were a psychological disorder?

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@NikkiS_MCSFS

Nikki S.

5 months

#LongCovid #ItCouldHappenToYou

Tweet card media

Long Covid Support

To learn more visit LongCovid.org

www.longcovid.org

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@NikkiS_MCSFS

Nikki S.

3 months

🧵8/8. I also remind myself of the amazing people I have met along the way - my incredible @long_covid family, the wider #LongCovid community who are there to pull each other through, and the researchers who listen & continue to push for answers. THANK YOU!! #CureLongCovid

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@NikkiS_MCSFS

Nikki S.

4 months

@drclairetaylor @CounsellingSam @HelenMMGoss @NHSGrampian @SammieFMc @PeteUK7 @long_covid @zalaly @rubyslippahs @Fionasstalker @_CatintheHat @ChrisCuomo @joaquinlife Utterly appalling. I’ve heard from some researchers that they are looked down on by colleagues for researching #LongCovid as opposed to a ‘sexier’ condition. Well, just know that those of us with #LongCovid are extremely thankful for the work you do. 🙏

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@NikkiS_MCSFS

Nikki S.

8 months

More from Prof. Philip Banfield at #Covidinquiry today: “We’ve had feedback from over 600 Doctors with #LongCovid and their stories are horrible. It’s disrupted their lives. It’s stopped their careers.” @long_covid #LongCovidRuinsLives #WeNeedAnswers

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@NikkiS_MCSFS

Nikki S.

6 months

📹 I watched the live stream of @BorisJohnson at #covidinquiryUK today. His evidence on #LongCovid hit me. I made this video. Thank you to my fabulous Long Covid family at @long_covid and the wider Long Covid community for the support and everything you do for each other. 💜

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@NikkiS_MCSFS

Nikki S.

2 years

Thanks to @CarolineLucas for raising #LongCovid directly with the Prime Minister. Unfortunately I have zero faith in his reply of: “we will do whatever we can to support people with Long Covid”. #TreatLongCovid @long_covid

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@NikkiS_MCSFS

Nikki S.

3 years

Met a fellow #LongCovid sufferer. He’d asked his GP for a letter to his employer recommending phased return to work as he’s tried full time & keeps relapsing. GP’s reply was apparently: “No, you’re alive, walking & breathing so you can work”. Why are some HCPs still so ignorant?!

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@NikkiS_MCSFS

Nikki S.

3 years

Sat in chair doing gentle exercises (1st level in ‘Living with Covid Recovery’ app that my Long Covid Clinic has got me using). Heart rate spiking at 177bpm (whilst on a beta blocker) reminds me that 20 months after getting Covid-19, #LongCovid is still a right bitch! #Covid_19

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@NikkiS_MCSFS

Nikki S.

10 months

Preprint on #LongCovid - findings include: • Risk includes having migraines • Risk strongly reduced in people on long term immunosuppressives - “warrants further research into the use of immunosuppressants in Long Covid” @long_covid #TreatLongCovid

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@NikkiS_MCSFS

Nikki S.

5 months

@RobWust @NatureComms Thank you for this. Question: Many of us with #LongCovid “crash” just as badly after cognitive effort as opposed to physical effort. How do your findings fit with that please?

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@NikkiS_MCSFS

Nikki S.

8 months

I struggled to carry my Dad’s coffin I struggled to support my Mum Nearly lost my business Was so ill I thought I would die Because of #LongCovid #Covidinquiry : @BorisJohnson scrawled BOLLOCKS on a Gov document on the condition. Didn’t think I could despise him more. @long_covid

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@NikkiS_MCSFS

Nikki S.

7 months

‼️ The Government was warned of a risk of long term health consequences of #Covid19 as early as Jan. 2020 - before I caught Covid. If they had acted on information at that time, I may well not have been left with the debilitating effects of #LongCovid for the last 40+ months.

@long_covid

Long Covid Support 🌍

7 months

🚨🎥 Dominic Cummings asked at #CovidInquiry , when was @BorisJohnson advised about long term health consequences of #Covid19 : “We knew of it as a general problem in January [2020]. It really bubbled up in May.” #LongCovid #LongCovidRuinsLives #WeNeedAnswers

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@NikkiS_MCSFS

Nikki S.

4 months

Some #LongCovid clinics discharge patients once they’ve been through what limited services they offer, regardless of whether or not they have improved. Many p/w #LongCovid , especially from earlier in the pandemic, feel abandoned and left to rot.

@ShaneyWright

Shaney Wright

4 months

Whenever articles mention #LongCovid clinics, waiting times, backlogs in LC clinics etc, the implication is that LC clinics are actually treating patients. Often they're not. There remain zero approved LC treatments & existence of LC clinics doesn't mean they're effective.

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@NikkiS_MCSFS

Nikki S.

6 months

@_clairereviews_ Wow, you’ve already been through so much. 🫂Do have a look at @long_covid ’s website. We also run a peer support group on Facebook that has been a life-saver to many. #LongCovid

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Long Covid Support

To learn more visit LongCovid.org

www.longcovid.org

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@NikkiS_MCSFS

Nikki S.

8 months

I’m into my 4th year of #LongCovid . @BorisJohnson thought #COVID19 was no big deal, ignored scientific advice. March ‘20: A No.10 aide wrote “we are f***ed". A Senior Official said “country is headed for disaster, we’re going to kill 1000s”. He has destroyed millions of lives.

@long_covid

Long Covid Support 🌍

8 months

Today we found out that @BorisJohnson scrawled 'BOLLOCKS’ across a @DHSCgovuk document about #LongCovid He admitted in his witness statement that he didn’t believe that #LongCovid ‘truly existed’ We now know that he thought it should be dismissed as a form of ‘Gulf War Syndrome’

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Nikki S.

8 months

@ShaneyWright As said by @long_covid ’s @Know_HG to @SkyNews : “It is abundantly clear…it is causing long term harm to the health of…the population, including the huge number of people who were not hospitalised in the acute phase of infection” #LongCovid #TreatLongCovid

Long COVID can cause long-term damage to multiple organs, study finds

Scans of long COVID patients show a third have multiple organ injuries months after leaving hospital, a new study shows.

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@NikkiS_MCSFS

Nikki S.

6 months

🚨’Post-COVID exercise intolerance associated with capillary alterations & immune dysregulations in skeletal muscles’… so not deconditioning, as we’ve been saying! - fewer capillaries & thicker basement membranes - increased CD169+ macrophage #LongCovid

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Post-COVID exercise intolerance is associated with capillary alterations and immune dysregulations...

The SARS-CoV-2 pandemic not only resulted in millions of acute infections worldwide, but also in many cases of post-infectious syndromes, colloquially referred to as “long COVID”. Due to the hetero...

actaneurocomms.biomedcentral.com

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@NikkiS_MCSFS

Nikki S.

3 months

🧵7/8 I’m now able to work from home but have had to stop some of my previous role. I can go out for slow walks. This condition still limits everything I can do. But although recovery has plateaued, I remind myself how different I am now to those first 18 or so months. #LongCovid

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@NikkiS_MCSFS

Nikki S.

11 months

Words from the brilliant @Sunny_Rae1 at the @long_covid webinar that all those in healthcare who are seeing people with #LongCovid should take note of: “First do no harm does not mean do nothing!” @NIHRCRN_nthames #LongCovidWhatsNext #TreatLongCovid

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@NikkiS_MCSFS

Nikki S.

3 years

@ahandvanish My “mild” case started 18 months ago. Heart rate has been up to 166bmp (brushing my hair) and as low as 37bpm (sitting down) & O2 level down to 76%. Many nights I thought I wouldn’t wake up again. I continue to be breathless, have crippling joint pain, fatigue and brain fog.

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@NikkiS_MCSFS

Nikki S.

3 years

19 months of #LongCovid . Still suffer from debilitating breathlessness (+ other symptoms). Had a 3rd Respiratory Physio appt yesterday. Was told: “There’s nothing else we can do”. I am 1 of 1.2million people in the UK with LC - we need treatments! #TreatLongCovid @sajidjavid

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@NikkiS_MCSFS

Nikki S.

3 years

@alitwy I’m with you Alison, it’s been nearly 19 months for me. I am certainly better than I was but still struggling with various symptoms including breathlessness, joint pain, tachycardia on even mild exertion, fatigue, brain fog and cognitive issues. Still have hope we will recover!

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@NikkiS_MCSFS

Nikki S.

8 months

It’s #CovidInquiry day again for us at Long Covid Support! Evidence to be given by Prof. Chris Brightling and Dr. Rachael Evans from @PHOSP_COVID followed by @selkieO representing the #LongCovid Groups. We will be providing updates on our @long_covid page! #WeNeedAnswers

@long_covid

Long Covid Support 🌍

8 months

📢 Join us in making a difference! The Long Covid Groups are taking center stage at the Covid Inquiry Hearings today. We refuse to be forgotten, unheard, disbelieved, isolated, unemployed, disabled, or immobile.

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Nikki S.

2 years

People with #COVIDBooster side effects: “OMG, I had the most excruciating joint pain, headache and horrendous fatigue, it was awful, it totally floored me for 3 days!” #LongCovid 1st wavers: “🤣 Welcome to a hint of what our world has been like for nearly 2 years!”

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@NikkiS_MCSFS

Nikki S.

3 years

@MrAndrewCotter Mine said he’s too busy to help.

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Nikki S.

2 years

@JimMFelton If only I’d worked harder then maybe I would’ve been allowed to have been with my Dad when he died.

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@NikkiS_MCSFS

Nikki S.

8 months

Many UK #LongCovid services focus on getting patients to learn to live with symptoms. Much research points to pathophysiology yet services are failing to develop in light of such evidence. We need a service to grow a pair and be leading innovators in LC care! #TreatLongCovid

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@NikkiS_MCSFS

Nikki S.

5 months

@drclairetaylor Absolutely! The right treatment can make such a difference (I know from personal experience)! Also many with #LongCovid not quite meeting the criterial for a formal #PoTS diagnosis but have all the symptoms. As you say, treat it!

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@NikkiS_MCSFS

Nikki S.

2 years

Off out to get my #booster . Anxious about potential side effects but having had #COVID19 in Feb. 2020 and have been suffering from #LongCovid since, I sure as hell do not want to go through this nightmare all over again!!

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@NikkiS_MCSFS

Nikki S.

2 years

Highlighting this paper again, as many people with #LongCovid are reporting that they are finding it extremely useful to show to their GP to help get appropriate care. @LOCOMOTIONstudy @ruairidhm @ClareRayner6 @bcdelaney1 @trishgreenhalgh

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Long covid—an update for primary care

### What you need to know This article updates and extends a previous BMJ Practice Pointer published in August 2020 when almost no peer reviewed research or evidence based guidance on the condition...

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@NikkiS_MCSFS

Nikki S.

5 months

@i_petersen @Emma_h_mua @DavidSteadson @ucl @chrischirp @_CatintheHat @ucl You should be utterly ashamed and embarrassed that @i_petersen is associated with your institution. Her words and behaviour to those chronically ill with such a disabling condition are highly callous, ignorant, unprofessional and severely tarnish your reputation. #LongCovid

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@NikkiS_MCSFS

Nikki S.

2 years

@Azeem_Majeed Not to mention that their Long Covid Plan apparently includes investing: “a further £70 million to expand Long Covid services to add to the £24 million already spent on Post-Covid Assessment Clinics”.

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@NikkiS_MCSFS

Nikki S.

4 months

Thank you @dgurdasani1 for this 🧵!Evidence of #LongCovid pathophysiology is mounting yet many researchers & funders continue to blatantly disregard the science and the patient voice. #LongCovid is destroying millions of lives worldwide. Effective research & treatment is vital.

@dgurdasani1

Dr. Deepti Gurdasani

4 months

1) Not useful to people with moderate-severe LC- as it excluded those who couldn't exercise; 2) Not a well controlled given a lot more engagement with intervention grp vs control grp (cannot rule out that this is a placebo effect- given it's tiny); 3) just 0.03 ⬆️in outcome score

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@NikkiS_MCSFS

Nikki S.

9 months

With implications for #LongCovid care, @zalaly states: “Resist the urge to simplify it, it can be many different things. If you’ve seen 1 Long Covid patient, you’ve seen 1 Long Covid patient. That’s how heterogeneous it is.” #TreatLongCovid @long_covid

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@NikkiS_MCSFS

Nikki S.

3 years

So #LewisHamilton does think he has #LongCovid . Many of us know the hell of Long Covid and that pushing yourself too much too soon is one of the worse things you can do, even if you’re an elite sportsperson. Take it easy Lewis!! @long_covid

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@NikkiS_MCSFS

Nikki S.

2 years

@Dr2NisreenAlwan Have been ill since Feb. ‘20. #LongCovid is an awful condition with vastly debilitating symptoms. My whole life is affected, even basics such as showering, dressing, hair drying, cooking, cleaning, reading, walking, shopping, work, everything. Had none of these issues pre-Covid.

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@NikkiS_MCSFS

Nikki S.

8 months

@long_covid @BorisJohnson @DHSCgovuk @LongCovidSOS @LongCovidKids @amibanerjee1 @Daltmann10 @selkieO @SammieFMc @RogersNat70 @JoD66 I struggled to carry my Dad’s coffin I struggled to support my Mum Nearly lost my business Was so ill I thought I would die Because of #LongCovid #Covidinquiry : @BorisJohnson scrawled BOLLOCKS on a Gov document on the condition. Didn’t think I could despise him more.

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@NikkiS_MCSFS

Nikki S.

11 months

Interview with @JeremyFarrar : “impact of #LongCovid is going to be huge. 7bn people infected, increase risk of diabetes, dementia, CVD by a tiny % and you’ve got a huge long-term problem. We’ve got to understand Long Covid and treatments.” @long_covid

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AI? Brain manipulation? WHO’s new chief scientist aims to anticipate global challenges

Still wary of COVID-19, Jeremy Farrar wants to bring a “sense of tomorrow” to health agency and countries

www.science.org

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@NikkiS_MCSFS

Nikki S.

8 months

Continuing their incredible advocacy, at the @covidinquiryuk today, the Long Covid Groups are #StrongerTogether ! @long_covid @LongCovidSOS @LongCovidKids #LongCovid #LongCovidLivesRuined #LongCovidRuinedMyLife #LongCovidRuinsLives #WeNeedAnswers

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@NikkiS_MCSFS

Nikki S.

8 months

I am so proud to work with both Prof. Chris Brightling and Dr. Rachael Evans in providing PPI to the @PHOSP_COVID study. Thank you both for your work and doing what’s right! #LongCovid #WeNeedAnswers #LongCovidRuinsLives @REvans_Breathe @RogersNat70 @ClaireHastie1 @JennyBunker

@long_covid

Long Covid Support 🌍

8 months

The fantastic response from Prof. Chris Brightling to @BorisJohnson writing “Bollocks…” on a document about #LongCovid #WeNeedAnswers #LongCovidRuinsLives @LongCovidSOS @LongCovidKids

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@NikkiS_MCSFS

Nikki S.

3 months

🧵6/8. I have certainly improved over the 4 years, but still have several ongoing symptoms that significantly impact what I can do, eg breathlessness, fatigue, pain, tachycardia (although meds. help with that), PESE, cognitive dysfunction. #LongCovid

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@NikkiS_MCSFS

Nikki S.

3 months

🧵3/8. I would wake up at night gasping for air, felt as if my heart had stopped. It was too painful to lie on my back. Had stabbing pains in my heart. My brain wouldn’t work. Could just about manage to get to the bathroom & back & would then have to sleep for hours. #LongCovid

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@NikkiS_MCSFS

Nikki S.

3 months

🧵4/8. I was so breathless. Calls to 111 just resulted in being told to stay away from hospital unless having a heart attack or turning blue through lack of oxygen. I had to accept there was no medical help then. Over the following months I very slightly improved. #LongCovid

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@NikkiS_MCSFS

Nikki S.

3 months

Managed to do some gardening yesterday. After few mins. of using secateurs I had lost strength in my hand, couldn’t form a fist, my knuckles were red and swollen, and I had tremors in my hand. Blood supply issue? Muscle issue? Other ideas? Anyone else with #LongCovid get this? ⬇️

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@NikkiS_MCSFS

Nikki S.

8 months

I caught #Covid19 in Feb. 2020. I’m into my 4th yr of #LongCovid with multiple ongoing symptoms that impact my life. What if @BorisJohnson & rest of the Government had listened properly to scientific advice and evidence and took appropriate action immediately?! #WeNeedAnswers

@long_covid

Long Covid Support 🌍

8 months

Now Prof. John Edmunds at #CovidInquiry : Q. It was clear by mid Jan [2020] that this virus had capacity to kill, seriously harm, hospitalise, that people were becoming infected by human to human transmission A. That was very clear certainly by end of the 3rd, 4th week of January

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@NikkiS_MCSFS

Nikki S.

3 months

🧵5/8. I was sent by GP to A&E at one point when SpO2 dropped to 76% & heart rate was 37bpm (v. different to usual tachycardia I had in the day!). I had so many symptoms in those first 2 years. And it felt like there was a blockage b/w my brain and the rest of me. #LongCovid

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@NikkiS_MCSFS

Nikki S.

3 months

🧵2/8.Symptoms continued, but it felt like flu with a few added extras! I improved over the next 3-4 weeks. But then, I got worse, and became much more ill than I originally was. I had never before felt so ill I thought I was going to die, but this changed that. #LongCovid

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@NikkiS_MCSFS

Nikki S.

1 year

3 years ago today I had #COVID19 . Still have issues incl. breathlessness, tachycardia, cognitive dysfunction, fatigue. At worst I was so ill I thought I would die. Wasn’t in hospital. I am 1 of millions who suffers debilitating #LongCovid . Still no treatments. #TreatLongCovid

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@NikkiS_MCSFS

Nikki S.

1 year

What not to say to p/w #LongCovid (oh, and other Covid-induced conditions!)…comments I’ve had this week: - “Come on, you aren’t that bad are you?” - “You look fine!” - [When I said I was shattered] “Oh me too, I know how you feel!” #HiddenDisabilities #TreatLongCovid

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@NikkiS_MCSFS

Nikki S.

5 months

@Hardasshelen Yep, happening a lot. Met someone who’s breathless when walking, severity fluctuates - on asking, had it since Covid. And another who’s now forgetting words - had Covid x3. Neither thought it could be due to Covid. (Although of course still needs checking in case it’s separate!)

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@NikkiS_MCSFS

Nikki S.

8 months

With some of our Long Covid Support members present at the @covidinquiryuk today for Module 2, some of us who are not well enough to attend will keep updating you on our @long_covid page! #LongCovid #LongCovidLivesRuined #WeNeedAnswers @JoD66 @ClaireHastie1 @ShaneyWright

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@NikkiS_MCSFS

Nikki S.

2 years

The @LOCOMOTIONstudy is looking for more UK participants with #LongCovid who have not been able to access a Long Covid clinic/service, to interview for the inequalities branch of the study. Payment offered for your time. DM @JordanMullard for details. @long_covid @ruairidhm

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@NikkiS_MCSFS

Nikki S.

3 years

Co-authored in The Lancet: “Patients report not being taken seriously by medical practitioners or refused… long COVID services. Services remain limited and where they exist, vary in scope and quality” #LongCovid @profhelenward @bcdelaney1 @Daltmann10

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Global surveillance, research, and collaboration needed to improve understanding and management of...

The scale of chronic ill health and disability after COVID-19 has been described as the next big global health challenge.1 Prevalence estimates of a post-COVID-19 condition, long COVID, or post-acute...

www.thelancet.com

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@NikkiS_MCSFS

Nikki S.

8 months

The amount of time & effort put in by patient charities (many are ill themselves) to ensure the voices of those with #LongCovid are heard at @covidinquiryuk is utterly heroic. Thank you to all involved! @long_covid @LongCovidKids @LongCovidSOS @LongCOVIDPhysio #TreatLongCovid

@BhattMurphy

Bhatt Murphy

8 months

Today: The 2nd preliminary hearing of Module 3 of the #CovidInquiry looking at the impact of Covid-19 on healthcare systems takes place. Our clients @LongCovidKids @long_covid @LongCOVIDPhysio @LongCovidSOS are calling for the recognition of Long Covid throughout the Inquiry.

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@NikkiS_MCSFS

Nikki S.

3 years

- Significant breathlessness - Crippling joint pain - Heart problems - Extreme fatigue - Cognitive issues - Big impact on your job - & more - 24/7 #LongCovid is hugely debilitating. #TreatLongCovid #countlongcovid @sajidjavid @CMO_England

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@NikkiS_MCSFS

Nikki S.

3 months

@doctor_oxford You recently said: “But mandating universal masking has significant costs as well as benefits not least around communicating clearly with patients”. As a p/w #LongCovid , healthcare professionals can clearly communicate to me that they understand #Covid19 by wearing a damn mask.

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