Shaney Wright
@ShaneyWright
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@WestHam Fan ⚒ | Accidental Centrist; Pro-Pragmatism/Science; Anti-Dogma. Fighting for Biomedical Research into, and Awareness of, #LongCovid. #FBLC
London
Joined February 2021
In years to come, when the reality of #LongCovid – of mass autoimmune, cardiovascular & neurologic disease – finally hits home, we better not hear from politicians/health leaders lines like "in retrospect, we should've done more/acted quicker" etc. We're telling them RIGHT NOW.
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Test all #LongCovid patients for cerebral hypoperfusion, endothelial function, dysautonomia, brain hypometabolism, NK cell activity, T-cell function, cytokines, GPCR & anti-ACE2 AABs, microclots, SFN, SvO2 level & CSF abnormalities, & then try & say 'all the tests are normal'. .
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For me, one of the absolute worst things about having #LongCovid is that my brain just doesn't work properly. The unrelenting derealisation, short term memory issues & more. It cuts into your very sense of self. It's as though the brain is sedated; continually half-asleep.
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Never realised that #LongCovid patients referencing peer-reviewed scientific studies, and sticking to the biomedical science like glue in their quest for proper, effective treatments to what is a life-altering and chronic condition, would offend so many doctors. Just incredible.
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It is unbelievable that major #LongCovid clinics, 2yrs on from establishment, aren't doing endothelial function, venous blood oxygen, microclot & hyperactivated platelet, cytokine, t-cell function, dysautonomia & MCAS testing on every Long Covid patient who comes through the door.
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I can honestly say that having had #LongCovid for 22 months, I haven't once felt close to recovery. This illness isn't improving for me. It just goes on. I might have a *relatively* better day once in a blue moon but that's all they are; still nowhere near normal. #TreatLongCovid.
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I personally know 5 people who developed high blood pressure (with other new health issues) following Covid, & 4 of them wouldn't necessarily class themselves as having #LongCovid. Far from being overestimated, the hidden, long-term burden of the virus is going under-the-radar.
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If I didn't have #LongCovid, didn't know ppl with it & didn't follow research, I likely wouldn't think of it as the utterly devastating, life-ruining, chronic illness it actually is if all I kept reading/hearing was, "sufferers had lingering symptoms for several weeks or months".
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For those with #LongCovid, 'Living with Covid' literally means living with a chronic, immune-mediated, small-vessel vasculitis that can't currently be treated by modern medicine. That's the reality for millions across the globe.
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There are 3 eye tests that've been shown in studies to effectively distinguish #LongCovid patients from controls. Nearly 4 years on, none of them have yet been rolled out clinically, & I can guarantee you that virtually no-one staffing a Long Covid clinic is aware of any of them.
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Why do we have people literally obsessing over whether #LongCovid prevalence is 5, 15 or 30% of those who get Covid, when the bottom-line is that millions across the world are now ill with a debilitating, multisystem, treatment-less condition, notwithstanding the denominator?.
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Tonight:.- Heart rate 120bpm just sitting on sofa;.- Eyes stinging/ watering;.- Blaring tinnitus;.- Toes deep purple;.- Struggle to bend fingers on right hand;.- Head pain/ neck pain/ rib pain. This is what Saturday nights now consist of. 2 years of #LongCovid. No end in sight.
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Don't know how many times 'experts' have to be told this, but #LongCovid isn't prolonged recovery, lingering symptoms or a slow return to baseline. It's a full-blown, chronic, neuroimmune & microvascular disease triggered by SARS-CoV-2 infection that has no effective treatments.
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Find it rather odd when ppl say, "well not everything is Covid" when it's literally the polar opposite that's actually happening: health authorities, docs, the public etc pinning almost nothing on Covid when study after study consistently shows it causing an awful lot of shit.
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How possibly could a doctor examining a patient with purple toes, splinter hemorrhaging, petechaiae, new cherry angioma all over, bloodshot eyes, enlarged veins & more think 'functional' or 'psychosomatic' instead of 'vascular inflammation'? It truly beggar's belief. #LongCovid.
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#LongCovid patients should be tested for:.– cerebral hypoperfusion.– venous oxygen saturation.– endothelial dysfunction.– autonomic dysfunction.– brain hypometabolism.– amyloid microclots.– hyperactive platelets.– mast cell activation markers.– cytokines.– functional GPCR AAbs.1/.
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My #LongCovid toes are literally akin to the toes of a corpse: Deep purple, swollen & incredibly painful to touch. Nails a mess, and breaking off. WTF is this thing? It's like something you'd expect after Chernobyl.
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The fact that SARS-CoV-2 can persist for many years chronically in tissues throughout the body in ppl who aren't immunocompromised & who had initially mild/moderate illness should, without doubt, be making far more waves in the media than it currently is. Shouldn't ppl know this?.
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#LongCovid IS cerebral hypoperfusion, brain hypometabolism, autoimmunity, dysautonomia, mast cell activation, endothelial dysfunction, microclots, platelet hyperactivation, neuropathy, vagus nerve damage, impaired oxygen extraction: All demonstrable. Question is, what links them?.
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How is it ppl are pondering how we could possibly have had such a large increase in cardiovascular disease over past 4yrs while completely oblivious to fact we've had 4yrs of a pandemic involving a novel vasculopathic virus that significantly increases cardiovascular disease? 🤔.
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We're at the point where there are #LongCovid patients too ill with LC for the LC clinics to handle, so they just choose to discharge (abandon) them instead. Imagine that was any other illness: MS patients being discharged from MS clinics cos their MS is too bad. Just imagine it.
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Why do doctors overwhelmingly seem to think Covid is virtually harmless, to the point it isn't even considered most of the time when someone presents with new-onset multi-systemic issues? Very bizarre given tens of thousands of studies show what Covid does, long-term. #LongCovid.
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Lots of money is wasted on giving MRI scans to #LongCovid patients with profound Cognitive Dysfunction ('Brain Fog'). It's the wrong scan; it almost always show nothing. Instead, these patients should be given .Transcranial Doppler scans, because this is a BLOOD FLOW issue.
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We're at the stage where ill #LongCovid patients are having to plead with doctors on @Twitter to stop minimising the condition & spreading blatant misinformation / scientific inaccuracies because no-one else is willing to tell them to stop doing so.
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Had an MRI & bloods taken today as part of a #LongCovid study at a centre normally specialising in Multiple Sclerosis research. One of the researchers remarked on how much overlap there is between Long Covid & Multiple Sclerosis symptoms. Much to be learnt from similar conditions.
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Most #LongCovid patients give up with doctors after some time because they offer *nothing* by way of treatment. On top of that, gaslighting & just the whole business of having, as a patient, to fight for appointments & understanding when you're profoundly suffering is exhausting.
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Having had #LongCovid almost 3yrs, it's still absolutely astonishing to me how little medicine knows about viral-onset illnesses, dysautonomia, MCAS, PESE, latent pathogens, autoimmunity & so on. It's almost unbelievable it knows so little & has been so neglectful of these things.
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Reading "#LongCovid causes vascular/neuro issues months on from infection" as tho it's some startling, breaking news when Long Covid patients have been talking – shouting – about it the past 20 months. Listening rather than disbelieving patients tends to help move things along.
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In a few years when the full reality of what Covid does to the body becomes widely accepted & unignorably, horribly evident, never forget that #LongCovid patients were telling you this from the very beginning. Never forget that we were consistently mocked, disbelieved & ignored.
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– Still 𝗻𝗼 #LongCovid antivirals trials.– Still 𝗻𝗼 immunotherapy trials.– Still 𝗻𝗼 BC007 trials. I'm fed up of saying it but the current state of Long Covid treatment trials is pathetic. It's not just a lack of urgency; it's a total absence of it. The pace of apathy.
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Why with #LongCovid 2.5yrs on am I STILL getting small blood vessels burst frequently in my eyes, & under my skin & fingernails? Docs not interested. Bleeding under nails; tiny red blood flecks on my skin; petechiaie; bloodshot eyes. God knows what must be happening internally.
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There seems to have been an assumption from the beginning within the risk management field that Covid would be a time-limited threat: an acute, temporary risk circumstance that would, within a few months to years give way to a resumption of the pre-Covid risk status quo. 1/.
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April 2020, I never, ever imagined I'd still be ill 2 years later. Naively, I believed I'd recover or be treated. Neither transpired. Perhaps a result of too much faith in my own body, medicine or both. #LongCovid.
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#LongCovid is, for many, not a self-limiting illness: It won't resolve with time & patience. It's a chronic, multisystem, autoimmune vasculopathy. Many have been ill over 2years; their lives devastated by it. Without effective, biomedical treatments, the nightmare just continues.
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Re #LongCovid, how is it possible that in Germany, it's possible to get tested for microclots/hyperactivated platelets & GPCR/anti-ACE2 autoantibodies as well as receive triple anticoagulant treatment, HELP aphoresis & immune adsorption whereas in the UK **nothing** is available?.
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I sound like a broken record but where are the #LongCovid treatment trials? The IVIG trials? Immune adsorption trials? Paxlovid trials? mAbs trials? Stellate ganglion block trials? Triple anticoagulation trials? Sulodexide trials?. What are medical authorities/bodies waiting for?.
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Genuinely lost 95% of respect I once had for the medical profession since developing #LongCovid — dysautonomia, mast cell disease, tumour, neuropathy and more. Too many doctors have nothing to offer aside from gaslighting born of sheer incuriosity, arrogance, ignorance and ego.
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#LongCovid shouldn't be a left-right political issue; it's a medical issue: a debilitating, multisystem medical condition impacting a large number of people. As a LC sufferer, I want research, biomarkers & treatments, not endless, needless, fruitless politicisation of my illness.
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What is it about #LongCovid that makes so many journalists unable to report on it sensibly, factually and scientifically?.
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The role of the vagus nerve seems integral to many #LongCovid symptoms. Are LC clinics routinely screening patients for vagus nerve dysfunction/damage with ultrasound? Is vagus nerve dysfunction a target for treatment? What is driving continuing vagus nerve dysfunction over time?.
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You can't think, will or meditate yourself out of #LongCovid just as you can't can't think, will or meditate yourself out of MS, vasculitis or lupus. This is a serious multisystem disease. Research / treatment that tackles the pathophysiology of the disease is what's needed.
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#LongCovid, for many with it, is a chronic microvascular disease and should be widely reported & treated as such.
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Imagine having MS or Lupus and turning up to a specialist MS or Lupus clinic only to be offered talking, singing and clapping as treatment for your life-altering chronic illness. This is the bizarre upside-down world #LongCovid patients now inhabit.
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#LongCovid is not some minor inconvenience. It's not just 'feeling a little rough'. It literally destroys your life. At times it makes simply existing an almost unsustainable ordeal. More people, incl doctors, need to realise just how cruel, ruinous & unrelenting this disease is.
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Rightly or wrongly, the fact #LongCovid treatments trials are so incredibly slow & in many cases, so under-ambitious (trials of antihistamines & lifestyle interventions for example), is one of the reasons many Long Covid patients decide to take risks & try medications themselves.
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We know that, in general, MRI brain scans don't show dysfunction in #LongCovid patients whereas PET brain scans do. That being so, re Long Covid patients, why do neurologists keep opting for MRI scans & not PET scans? Why is research not guiding what is happening on the ground?.
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#TreatLongCovid is not just a hashtag but a pressing need across the 🌍. Millions have been left suffering the chronic, systemic, life-ruining effects of SARS-CoV-2. News reports on #LongCovid from countries across the globe attest to this reality. (1).
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Why do sufferers of #LongCovid, #MECFS and other viral-onset conditions have to fight tooth & nail for literally everything, including fundamental rights, like the right to be seen; to be believed; to be treated; to have doctors keep themselves up-to-date with relevant research?.
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Why is no one at least attempting to treat #LongCovid as an autoimmune condition? It feels that those with LC in the present have essentially been written off. I've many symptoms that point to autoimmunity yet am just expected to grin & bear it. This continued inaction is immoral.
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I often see #LongCovid conflated with fatigue but they're not one & the same. In my case, I could probably walk a marathon. My biggest issues are difficulty breathing in, tinnitus, high HR/BP, blurry vision, derealisation, rib pain, chronic indigestion, mast cell issues & others.
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Every single day for 2 yrs, from the very moment I've woken up, I've felt concussed: Tinnitus, pain, derealisation, eyes bloodshot, eyesight unable to focus properly. 2 yrs on, can someone please please do something to help those of us suffering this day in, day out? #LongCovid.
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To see Paediatricians mocking the idea of #LongCovid in children, and in turn, mocking those children suffering with the condition, many of whom have had their lives devastated by it, is one of the most, if not THE most, sickening things I've seen on Twitter in my 2years on here.
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Why are so many #LongCovid researchers seemingly neglecting the role of mast cells in the pathophysiology of the condition? They're seldom mentioned. It can't be coincide that almost overnight, a huge number of people have developed severe histamine issues.
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#LongCovid clinics could roll out tests for LC biomarkers in a matter of weeks. The reason this is not happening is n̲o̲t̲ because biomarkers don't exist (they do exist & have for over a year). Rather, it's a result of a lack of will; of apathy; & of unacceptably slow bureaucracy.
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Lately I've heard 'experts' talk about Omicron innumerable times yet not mention #LongCovid once. Not a single, measly utterance. Nor has a single reporter – not one – bothered to ask about its LC implications. Chronic illness has been entirely eradicated from the discourse.
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Many #LongCovid symptoms point to neuropathy, dysautonomia, MCAS, ongoing inflammation etc. But those things don't get to the crux of 'why'. Why do I have pins & needles? Due to neuropathy; but why the neuropathy? I have bloodshot stinging eyes due to MCAS, yes; but why the MCAS?.
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Every single time I see a doctor for my ongoing #LongCovid, I come away from the appointment utterly disheartened & forlorn. Any sense of hope – of treatment on the horizon – is completely crushed. It makes me realise that we truly have been thrown on the scrapheap. No-one cares.
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Thinking back to 2020, it's both remarkable & abysmal how docs could've thought Covid was a 2 week illness or death with seemingly zero sense it might lead to chronic illness (#LongCovid). Failure to learn from SARS in the 2000s or any other viral infection is utterly astonishing.
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Most people (over 90%) have epstein-barr virus in their body. A small minority – those with MS for example – appear to develop a kind of aberrant, autoimmune reaction to the latent epstein-barr virus. Could the same be happening with #LongCovid in relation to SARS-CoV-2 protein?.
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Personal experience of #LongCovid is saying viral persistence; occam's razor is saying viral persistence; now the scientific evidence is repeatedly & loudly saying viral persistence. We need effective antivirals now. #TreatLongCovid.
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What's with the random body jolts, the twitches everywhere, the pins & needles at the slightest bit of pressure being applied, the eeeeeeeee-sounding tinnitus, the floater-filled vision? Why is the #LongCovid nervous system so persistently inflammed & aggravated?.
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Having #LongCovid opens your eyes to just how little medicine can or is willing to do for so many life-altering chronic illnesses. I don't think people without chronic illness realise just how scarily little medicine has progressed in so many areas comparative to 100 years ago.
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500 studies showing immune, endothelial & neurological abnormalities in Long Covid patients = very little media coverage. #LongCovidAwarenessDay = Very little media coverage. 1 questionnaire study downplaying Long Covid, not even published as pre-print = Universal media coverage.
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#LongCovid is living life through a heavy, concussion-like, drunken haze; as though every day starts with being hit round the head with a baseball bat & downing 7 vodka shots. The haze never lifts. It mediates every moment of how you experience the world.
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It's very very easy for someone to argue for a cautious, incremental, 'give it time' approach to #LongCovid treatment when they don't have Long Covid.
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The claim that #LongCovid sufferers have 'normal immune systems' is beyond ludicrous. I can tell you that based on 2 years of personal experience. The immune system is in absolute disarray. It's just that standard tests don't capture it. More specific tests needed asap.
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Attempts to frame #LongCovid as somehow 'woke' are pathetic and vile. Long Covid is a medical condition. It is objective, measurable cerebral hypoperfusion, endothelial dysfunction and more. Intrinsically apolitical. Not left or right. Just hard, demonstrable, scientific fact.
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"Long SARS patients were ordinary people, with no predisposing factors, who nearly drowned under a tsunami of severe illness & ongoing sequelae". "None of our patients got their old life back with time & treatment. Some were never able to return to work".
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That the media have launched a concerted attack on the use of the term #LongCovid on International Long Covid Awareness Day of all days says everything you need to know about the stigma, dismissal, denial, vitriol and resistance Long Covid patients relentlessly face 4 years on.
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Today I've seen the UK #LongCovid study showing organ damage in previously hospitalised Long Covid patients being covered by some news outlets. The main message has been that such damage is linked to severity of initial illness. This will be reinforcing a misassumption. 1/.
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Never knew until today that 'pretzel legs' – twisting your legs around each other when you sit – is a sign of orthostatic intolerance / dysautonomia.
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We need #LongCovid specialist doctors in clinics. Long Covid should be a medical subspeciality.
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Why are chronically ill #LongCovid sufferers having to fight tooth & nail for things like biomed research, tissue biopsies & urgent treatment trials? Why is it there seem to be so few ppl in a position of power & authority thinking 'we better start doing these exact things asap'?.
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Covid has massively increased rates of viral onset chronic illnesses like POTS / dysautonomia, ME, mast cell + autoimmune disease & small fibre neuropathy. It defies common sense that we're not seeing a correspondingly massive increase in research funding for these illnesses.
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17 months in, I'd describe #LongCovid as feeling like I've sustained a heavy concussion following 5 nights of no sleep. As though someone has shaken my brain like a snow globe. The neurological effects - the derealisation, dysautonomia, blurry vision, twitches etc - are awful.
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On #LongCovidAwarenessDay, things I can no longer do due to #LongCovid:.-Stand up w/o feeling dizzy.-Wake up feeling refreshed.-See w/o floaters in vision.-Hear w/o constant buzz in my ears.-Exercise.-Breathe normally .-Drink alcohol w/o allergic reaction. And so so much more.
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Let's hope #LongCovid not only sparks a sea change in how viral-onset illnesses are understood/treated but in medical ethics, attitudes and conduct also.
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Is SARS-2 hiding inside nerve cells, leading to the neuropathy, tinnitus, jolts, dysautonomic breathing & more that so many #LongCovid sufferers are experiencing? The need for LC tissue biopsies is bleedingly obvious. Just how, 2.5 years on, have they STILL not been carried out??.
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Looking back, future generations will find it utterly baffling that #LongCovid sufferers had to contend with relentless doubt, minimising & abuse (from doctors!) & had to fight & fight for research & treatment in the midst of a pandemic involving a SARS virus that killed millions.
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Virtually every #LongCovid sufferer I've seen do the CellTrend autoantibodies panel has returned a positive result for anti-ACE2 autoantibodies, among others. Is this merely a coincidence? I can't understand why these specific autoantibodies aren't being tested for in the UK. .
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The fact #LongCovid deniers/minimisers consistently refuse to engage with the vast and expanding biomedical literature on Long Covid is testament to the purely ideological nature of their position. It's a matter of science vs dogma.
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Unsurprising general public do not appreciate #LongCovid risk when there's no public health campaign; when politicians never mention it; when media 'experts' barely acknowledge it; when commentators continually downplay it; & when research into it moves so slowly (little urgency).
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Months have passed. I've still not heard a #LongCovid minimiser explain how sniffer dogs, trained to detect SARS-CoV-2, are able to distinguish between #LongCovid patients & controls from sweat samples, as per the findings of 2 independent peer-reviewed studies. STILL waiting. .
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It's very bizarre that #LongCovid can be psychologised despite the fact that if you take immune cells from LC patients & put them in mice, the mice develop LC symptoms. Despite the fact rabbits develop LC symptoms when you induce in them the same GPCR AAbs many LC patients have.
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If #LongCovid is psychological, how have I got +lupus anticoagulant; fasciculations; high bilirubin/ALT; intermittent proteinuria; foamy pee; high TNF-Alpha; likely SFN; hypertension; rashes; tinnitus; vision issues; nail weirdness; sneezing & more? All clearly physical things. .
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Splinter hemorrhaging, petechaie, purple toes, stinging bloodshot eyes, floaters in vision, concussion-like derealisation, tight heavy chest, pins & needles all over & high-pitched tinnitus yet no medical treatment nor any substantial medical interest. #LongCovid, over 2yrs on.
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At what point does the scientific evidence of biological abnormalities in #LongCovid patients become so overwhelming & undeniable that psychologisers of the condition feel morally obligated to apologise for the way they've so shamefully patronised & mistreated those suffering it?.
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Still cannot get my head around how, 2 years on, things that may help #LongCovid patients like BC007, the 3 drug anticoagulant protocol etc still aren't being actively trialled due to lack of funding/will, yet a LC obesity study was funded to the tune of £1million. How? Just how?.
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#LongCovid patients have already tried things like aspirin & antihistamines. We know their benefits are limited. Focus must move on, to things like MABs, antivirals, ganglion blocks, immunomodulators. The medical world shouldn't be trailing the patient world by a year & a half.
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The #LongCovid tinnitus is insanity inducing. 3 years now & there's no getting used to it. The sound permeates every moment of waking life. The fact there are next to zero treatment trials for this nightmarish symptom, despite plenty of things that could be trialled, is appalling.
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What is the eeeeeeeeee #LongCovid tinnitus for goodness sake!? We can send spacecraft beyond our solar system; submarines to the deepest parts of the ocean; and smash protons together at nearly speed of light, and yet no-one, NO-ONE, can fully explain & treat Long Covid tinnitus.
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#LongCovid clinics need to move beyond teaching patients how to pace & recommending they take antihistamines. These clinics cannot just be about giving people basic, googleable tips on how they might try & live with a debilitating, at-times intolerable, multisystem vasculopathy.
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#LongCovid is not simply the result of something that happened; it's the result of something that's *happening* within the body, in the present. It's the result of active, continuous pathology - an ongoing, developing disease; not merely lingering illness.
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90% of current #LongCovid research is pointless, notwithstanding researchers' good intentions. Stop obsessing over counting Long Covid, apps & setting up 'services'. We need biomedical research AT SCALE. Find out what this thing is; what's driving it; phenotypes; how to treat it!.
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I was informed by a #LongCovid denier today that no matter how much evidence I put in front of them, I'd never be able to convince them LC exists. Serves as a stark reminder of the level of wilful ignorance LC sufferers & those trying to raise awareness of it must contend with.
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#LongCovid is cruel. Leaves you in a drunken haze to the point you forget how it is to be fully present in the world. From the fatigue, insomnia, tinnitus & muscle/nerve pain to the vice-like chest that feels as if you're being smothered. It crushes you entirely. Eats you up.
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