Alex Sprackland
@AlexSprackland
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Engineer. BMX. Powerlifter. Electronic music producer. Long Covid since March 2020 has put all that on hold, though 😓.
Joined June 2011
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Pinned Tweet
Retweeting because I accidentally deleted it.
Dispelling the idea that if you are young, fit and healthy, Covid won't harm you.
Long Covid since March 2020
100% unvaccinated
#LongCovidAwarenessDay
#LongCovidAwareness
#LongCovidAwarenessMonth
#NotRecovered
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If exercise helped with long Covid, I would be cured. It isn't. It makes it much worse.
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I am willing to bet that the vast majority of Long Covid and ME/cfs sufferers tried to exercise their way out of it. It was the first thing they tried.
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So my NHS Long Covid Clinic has discharged me because I am trying an off-label treatment from a private clinic. The Long Covid clinics don't offer you anything and will discharge you if actually find some willing to try a treatment.
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So I just got my lymphocytes panel done for
#longcovid
. It has come back as immunodeficiency in CD4 cells. Interesting that the clinician has stated this could be a viral infection when Long Covid may be persistent virus. Does anyone know what I could do about this?
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It's not a fear. It's what happened to me.
A common and terrifying fear in many people with
#LongCovid
is that their partner, unable to tolerate their illness, will leave them.
@CIBScenter
@WesElyMD
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A serious issue with having
#longcovid
is I have no one to discuss emerging research with, who has the capability of acting on it. I have no Dr I can call who could try a promising medication on me. I'm severely ill, completely unmedicated, and left to my own devices.
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My orthostatic intolerance has been severe past few days. I have had to stay horizontal. I thought of this joke.
Where do people with orthostatic intolerance live?
Can'tstandinople
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My mum and dad have both had Covid twice now. Neither have developed ongoing Long covid symptoms. If its just genetics, why do I have Long Covid but not them....
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Today is
#LongCovidAwarenessDay
.
On the 12th of March, I passed my 4 year
#LongCovid
anniversary. There are still no treatments for me or the millions of others suffering. This has to change!
Retweeting because I accidentally deleted it.
Dispelling the idea that if you are young, fit and healthy, Covid won't harm you.
Long Covid since March 2020
100% unvaccinated
#LongCovidAwarenessDay
#LongCovidAwareness
#LongCovidAwarenessMonth
#NotRecovered
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240
899
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I don't really look like my profile picture anymore. It was taken a few months before I became ill. I can't replace it with a new one because I'm mentally still there. I can't identify with this person I currently am.
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So this is the planned research on
#longcovid
in the UK. Only one on mechanisms. The rest wasted on self management and even resistance exercise! It is absolutely pathetic and unacceptable that in year 4 of the pandemic, we are here.
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Can anyone in the
#longcovid
space tell me why sleeping makes me so ill? Even after a 30-minute nap, I wake up as if my nervous system is on fire. Takes hours to lift sometimes. Having naps just isn't worth it for me.
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It was my 4 year
#Longcovid
anniversary yesterday. 12% of my whole life spent like this....
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Imagine being offered the services of Ron Davis to get your ME study right and then not getting back to him. They don't want to find treatments for this disease.
@dancingstrheart
@oslersweb
Ron Davis called up Avi Nath at the beginning and offered to help him and make sure the study included everything and had the right inclusion criteria but he never got called back.
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Mario was a member of the Long Covid support groups on FB. We spoke a lot whilst he was trying to deal with severe Long Covid. He was a nice bloke and didn't deserve this vile illness.
RIP Mario
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I have a strong suspicion that in the future, when medical technology is more advanced and neurological testing is more comprehensive, FND will turn out to be a bunch of undiagnosed organic neurological conditions.
#fictionalneurologicaldisorder
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So, the annual loss to the UK economy due to
#LongCovid
is £3.3billion. Higher than breast cancer and ME/CFS. (Probable LC and ME/CFS overlap). Yet the UK government has no plans for ongoing funding of research...
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If the cure to Infection onset diseases like
#longcovid
was some supplement you could buy from Amazon, we would all be cured years ago.
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I go to make an appointment with my GP, and this is their definition of Long Covid "tired, sleepy, weakness, long recovery after Covid infection"
No wonder no one takes it seriously.
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Can anyone in the
#longcovid
community direct me towards good tests that are available clinically to test Vagus nerve dysfunction?
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Bc007 trial has apparently started giving infusions. All my fingers and toes are crossed to the point of breaking....
Die
#BC007
Studie scheint wohl wirklich anzulaufen.
Erste Probanden berichten das sie eine Infusion erhalten haben (BC007 oder Placebo).
Jetzt heißt es Daumen drücken und auf positive Ergebnisse hoffen!
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Those with
#longcovid
,have you ever had sequelae after any other viruses before?
I've breezed through every infection I've ever had before Covid. Recovering instantly. Even EBV. Clearly, there is something about Covid for me....
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What a fantastic, well referenced article about
#longcovid
. I was surprised for it to come from British Psychology society, but maybe the tides are changing there....
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@SBLitAgent
I'm in much of the same position as you. 31 years old, athletic my whole life. Used to get up at 5 am 5 days a week to go to the gym. Completed in weightlifting competitions. 28 months in, I'm bedridden and I can't Tolerate standing. Need a wheel if I leave the bed.
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I wrote this poem about the isolation that comes with my illness.
#LongCovid
#LongCovidAwareness
#LongCovidAwarenessMonth
#NotRecovered
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The first batch of Billboards are up! Thank you to everyone who supported us to do this.
#LongCovid
#MECFS
Hello everyone, we are excited to announce that the first four billboards have gone up, with the final board from this batch due to go up tomorrow.
5 Billboards for 2 weeks
Second 5 billboards go up from 18th
Please RT, share.
#longcovid
#MECFS
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Has anyone had the incelldx incellkine test for
#longcovid
? I had my results back today, and I'm not sure what to make of them. Most readings are low. Exhausted cells, maybe?
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Started Bruce Patterson's Statin and Maraviroc protocol last night (just statin for first week).....
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@moreisdifferent
We only started avoiding exercise after PEM start making us worse. The literature says its dangerous because it is dangerous.
I'm glad it helped you. It didn't help me or most other people.
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I went outside yesterday, which is a rarity for me. Great for my mental health, not so great for my physical health...
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The van with the audio.
#LongCovid
#LongCovidAwarenessDay
Here's what people will be hearing around Westminster today, thanks to
@LCMEBillboards
Digivan that is currently circling around DWP, parliament and SW1 generally!
#LongCovidAwarenessDay
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@Dadsaysjokes
I removed the shell from my racing snail to make it faster, but now it's more sluggish
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Donations are still coming in. If you like what we do, please consider supporting our gofundme.
#LongCovid
#MECFS
Hi everyone, all the boards from the first batch are up. Donations are coming in and in the last 24 hours we have had £282, which is over half a board. Also a news article covering the board in Swindon. Please share so we can continue spreading awareness.
#LongCovid
#MECFS
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@MchP66592467
It's the same story over and over. The money still being spent in exercise research is infuriating.
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Requoting on the right tweet:
After the success of the post office scandal show. ITV are looking for new scandals to bring to light. The
#MECFS
and PACE trial scandal would be a great one.
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Did anyone ever look for evidence for viral persistence in SARS 1 patients?
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I wonder if Vagus nerve dysfunction is central my LC presentation. Anything that activates Vagus nerve makes me very symptomatic. Last time I did deep breathing exercises, it paralysed one side of my face and felt like I was going to seizure again.
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@HarryBoby4
Those of us who are more severe don't have this luxury. Im stuck in my house, and i can't walk. Most of my day revolves around managing my illness.
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After 2nd infection spring this year, got drastically better. Went from 0 steps (wheelchair bound) to 2400 steps a day over summer. Pushed it too much had a big relapse in August, put a stop to the recovery. Still better than before 2nd infection can do about 300 steps a day now
For some people their long COVID gets worse with every reinfection. Others have been cured from a reinfection.
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@LizzieLansdell
There isn't any treatment. We are still sick. They can treat specific symptoms but not the actual disease
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This study is super interesting. It may be in hospitalised patients, but it shows distinct inflammatory profiles and subcategories of
#LongCovid
based on symptom profiles. Another suggestion that JAK inhibitors could be a potential treatment.
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A lot of my mates have gotten into the gym recently. I'm really happy for them, but the level of jealousy I experience when I see their videos is hard to deal with. The gym is one of the things I miss from my old life the most.
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@drgregkelly
Cure, probably not. Effective treatment is another matter. It took 6 years to find a treatment for HIV, 15 years for a very effective treatment and that was 20 years ago. I have faith an effective treatment will be found. My hope is its within 5 years.
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@ShaneyWright
The fact that there are no Endo Pat tests to test endothenial dysfunction in Long Covid clinics is ridiculous. One of the most consistent findings and raising risks of cardiac complications. Its a simple non invasive machine.
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They have both been vaccinated and I have not, but depending on the research you read, that may or may not make a difference.
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@Inge_V
@Psycholoog_ME
I was encouraged to do GET by a neurologist. That's why I'm in a wheelchair. 2.5 years later, I haven't returned to how I was before.
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I was part of microclot study last year. On first visit, I had slightly elevated microclots, but on second, they were more in line with the control group. The reduction does correspond with improvement of symptoms after a 2nd Covid infection. (I think it was that that caused it)
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@Kayjr
If people were prescribed rest from the beginning it could have been so different for so many people.
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@vass_vassiliou
@JAMAInternalMed
@justvick
@uniofeastanglia
@NNUH
@AnastasiaSMihai
@iamritu
@hvanspall
@GARCIAEDINSON95
@Abraham_RMI
@_atanas_
@DrMarthaGulati
@purviparwani
@mmamas1973
@trishgreenhalgh
I was a competitive weightlifter who was extremely healthy, didn't drink, and didn't smoke. I've been sick with Long Covid since March 2020. I think genetic predisposition plays a big role here as well. Most of the LC patients I know from the gym.
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Any
#LongCovid
people taking Tolovid? Has it helped? I've had a bottle of it in my room for months now, and I'm sceptical to try it...
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@RogerSeheult
Do a study and publish it, then. Amazing you are having such success in your clinic even though everyone else had tried this stuff and it's had no positive effect.
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@The_Gloria_Sun
After my mild covid infection in march 2020, I had mild LC, could walk around town and do 15,000 odd steps a day. 3 years on, I'm in a wheelchair and can't really leave the house. Just kept progressing, don't know why. Pacing never helped.
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@ShaneyWright
Only 6% of it went towards pathobiology studies to actually look for mechanisms. The incompetence is staggering.
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Can any
#LongCovid
folks who have had a lymphocytes subset panel done, tell me if this one is comprehensive enough?
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I, for one, am absolutely shocked that
#LongCovid
isn't just going away if everyone ignores it enough.
🧵The
@ONS
have published
#LongCovid
prevelence data from the Winter CIS
England+Scotland only
❗️2 million (3.3%) have
#LongCovid
❗️1.5 m adversely affected
❗️381k severely impacted
❗️71.1% have had symptoms a year or more
❗️51.3% 2 years +
❗️30.6% 3 years + 600k people
1/3
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To clarify. I don't think LC is 'just' genetics. My post is a challenge to that statement. I think LC is triggered by a range of factors, including genetic predisposition+circumstances at time of infection+possible viral load+health+potentially many other factors.
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So I thought I'd have a go at the nicotine test for
#LongCovid
. Started the low 3.5mg today, and I feel weird as hell. As if my whole body feels like how your mouth feels when you have one of these things.
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I'm getting in on this 'guess the piece' action. One of only about 5 that I can play right now 😅
@Ramyisback
@j_b_kennedy
@GeoEduOne
@DrAndrewGWood
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Does anyone else in the
#longcovid
community have orthostatic intolerance that DOESN'T produce tachycardia.
Have post exertional symptoms, but ISN'T energy limiting in any way?
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Can anyone link me to the thread where someone posted a link to a document with something like 20,000 studies about the biological underpinnings of
#LongCovid
?
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@ShaneyWright
Danny Altmann's recently Nature review came to the conclusion there is enough solid evidence of mechanisms to start drug trials here in the UK. There is no excuse anymore.
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@ShaneyWright
I saw a comment the other day. "FND is the Astrology of Neurology" totally true. If a Dr mentions functional to me, I see them as a quack.
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@ShaneyWright
I think the dysfunctional nervous system sends incorrect signals to activate immune system. Mast cell activation probably further downstream. Has anyone done any sleep research into long covid? I've been referred to a sleep clinic, but not sure how helpful it's going to be....
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@DiedSuddenly_
@SandraYozipovic
Can we get
@CommunityNotes
on this. This is demonstration for Long Covid, ME/CFS and vaccine injury in Germany. This post deliberately removes the event banner at the beginning of the video.
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I have ridden Bmx for over 20 years, it is my biggest passion in life. I used to ride for hours every day. Due to Long Covid, I'm now in a wheel chair. I got sick in March 2020, and I never recovered. I haven't ridden my bike since.
#LongCovidAwarenessDay
#NotRecovered
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Roses are red
My feet have gone blue
Long Covid messed up my circulation.
And it will to you too.
Roses are red
Violets are blue
Long Covid messed with my brain
And now I can’t even rhyme things
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@ShaneyWright
Also, most of the research I've seen showing persistent virus, it's also been present to non long covid controls. The fact that it's there doesn't necessarily mean it's causing disease. Faulty immune response to spike could explain both conditions. Gpcr-aabs most likely imo.
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@ElianaUku
I had exactly the same! Family members having like an intervention telling me the risks of being bedridden. I was too ill to even stand up
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@AmandaB55744931
Imagine that approach to cancer. 'Let's leave you untreated and see how you are in 6 months'
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@DrAndrewGWood
Yes, constantly. A huge proportion of my symptoms are bizarre sensations that I have a really hard time explaining how they feel. They are very extreme. It's all I can feel a lot of the time.
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I see the Tocilizumab trial in the UK requires elevated CRP. How many Long Covid patients have consistently elevated CRP? I was under the impression it is not generally....
For those with
#LongCovid
, is your CRP consistently high?
My CRP is high
53
My CRP is normal
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@Renmakesmusic
@alexandrite113
Ren, Covid has done to a lot of us what you have been living with for 15 years. In many cases worse. It destroyed my life. Why are you speaking about your experience with chronic illness in your music whilst belittling other peoples lived experience of chronic illness?
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"To our knowledge, this study provides the first blood transcriptome Long COVID biomarker with >90% sensitivity and specificity, hence amenable for large-scale diagnostic testing on the robust nCounter platform"
Will 2024 be the year of the
#LongCovid
test?
#LongCovid
Pre-Print:
48 patients / 12 controls
"Study provides first blood transcriptome biomarker with >90% sensitivity & specificity... a 2-gene blood biomarker."
"Blood transcriptomics reveal systemic SARS-CoV-2 persistence 2 years after infection."
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I don't trust Pfizer what's so ever, but they have a pretty strong incentive to try and prove Long Covid isn't vaccine injury, so this may end up being helpful.
Pfizer is especially interested in a clinical test to scientifically determine presence of persistent SARS for the purpose of evidencing those who are suffering “vaccine injury”, who in fact had asymptomatic infection they never knew about due to effectiveness of the vaccine.
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My Journey with
#dysautonomia
with
#longcovid
has been a bit of a weird one. Early in my illness (2020) when I was mild, I had lots of tachycardia, which culminated in having POTS symptoms (extreme tachycardia, headaches and heart pumping in ears on standing)......
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@ShaneyWright
Brain fog is a bad name for the phenomenon. If you ask a random member of the public if they have brain fog, they will probably say yes , they don't understand the difference. Brain fog is what you get when you're tired. Not the extreme version experienced by lC and Me/cfs.
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@Know_HG
@angryhacademic
Basically, but I made the nurse put that I was being discharged with no recovery, so I don't look like a positive statistic.
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Hi everyone. The billboard in Cardiff for the Covid inquiry has gone up. This board was put up by an independent and not directly by us. If you would like to support him, here is his GFM. Thanks to
@GarethEvans1977
for the great work.
#LongCovid
#MECFS
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@guardianscience
This is a fantastic article. Great to see some of the culprits actually named! *cough Wessely! Cough cough.
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Thank you,
@Daltmann10
, for continuously advocating for those of with Long Covid.
Great to see
@Daltmann10
getting a prime time slot to explain Long Covid and why it matters on
@SkyNews
today
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"We observed that T cell activation in spinal cord and gut wall was associated with the presence of Long COVID symptoms"
Why is a SARS persistence test & SARS viral load test, so critical?
We understand there can be "asymptomatic acute infection", right?
There's also "asymptomatic chronic infection".
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So it seems that my low CD4 has resolved (still on the low end, though). Tryptase normal and negative for EBV reactivation. Good news...... I guess.
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