#immunosuppressed — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #immunosuppressed, aggregated by home.social.
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How many #Accessibility #Telepresence units do you set up at your [ community / progressive / socially-aware / self-declared-ally / pat-yourself-on-the-back ] in-person event, so that #ImmunoCompromised / #ImmunoSuppressed folks can participate remotely.
None?
Yeah, thought so.
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Also, the #ImmunoCompromised & #ImmunoSuppressed are no longer allowed to protest in #VicPol.
That definitely needs to be challenged at #AHRC - this is a law that explicitly blocks the ability of #Disabled people to participate in protected political activities, on the basis of banning their #Enabling #Assistive medical devices. https://aus.social/@BestPreston/113667451912121998
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What part of #Progressive #Intersectionality is it where you're a vocal #Advocate / #Ally for every oppressed minority group, but also “fuck the #Immunosuppressed and #Immunocompromised” because you want to go to bars, clubs, restaurants, and gigs, and don't want to wear a #Mask? #Covid #CovidIsNotOver #YAllMasking #NotSoHighHorse
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Pleased to manage some journal paper work this afternoon, then watch two #Worldcon panels on catchup ("Scot-ish: The Influence of Scotland on Fantasy Worldbuilding", and "It's Life, Jim, but Not as We Know It" about searching for life beyond Earth). Still #Covid neg but we're pretty sure I had it too. Picked up on a brief visit to #StAndrews. We didn't dare go to Worldcon in person for the infection risk to severely #immunosuppressed me. #Scotland #Fantasy #SearchForLifeInSpace #LifeInSpace
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Envious of my friends (including some St A CS folks!) who are heading to the #Glasgow #Worldcon this week. Sadly though we have in person attending tickets we can't go. I'm far too seriously ill now to manage it. Plus the infection risk is too high for severely #immunosuppressed me. We can use the #streaming part of our tickets though, both during the event, and on catchup after through to Christmas. So will get to see lots. Have fun folks going! #Covid #GlasgowWorldcon #Worldcon2024
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Has anyone gotten Pemgarda? Kaiser says, and I quote, "...Pemgarda is not offered at Kaiser, pending further safety and data review. There is no clear timeline as to when it may be approved and/or offered to select patients through Kaiser." Let's ignore the FDA said it's safe enough to use in this emergency situation for immunocompromised patients. tbf I'm cheaper to Kaiser dead of covid. I'm willing to pay out of pocket if needs must. #NEISVoid #Pemgarda #Immunosuppressed #PsoriaticArthritis
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Huge thanks to #NHSTayside for my 9th Covid vaccine this morning. Very efficiently done, and I'm extremely grateful for the protection, even if my #autoimmune neuro disease sadly flares dramatically for 3 months after every #Covid #vaccine (yes my doctors know and we agree I keep getting them). Having had Covid 3 times in recent months I want the protection too much not to take my offered vaccines. Thanks to the #NHS. I'm severely #immunosuppressed, hence so many vaccines. #Tayside #NHSScotland
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Booked in for my 9th #Covid #vaccine by #NHS #Tayside. I get so many because I'm severely #immunosuppressed. Covid vaccines have all so far triggered 3 month long #autoimmune #neurological illness #flares for me. Extremely hard to cope with. But I need my protection more. I'm lucky to generate #antibodies. #neuro #NHS #NHSScotland
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Back home from my second (last dose) #shingles #vaccination at the #Dundee Vaccination Centre in the city centre. Huge thanks to #NHS #Tayside staff and volunteers again. I qualify for the shingles vaccine this year because it's being extended to severely #immunosuppressed people aged 50+. Very grateful. #vaccine #NHSScotland #NHSTayside
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Rejigging two dental appointments at the start of February. Too soon with my current Covid infection. It's amazing how little guidance there is about this. I found one dental professional saying 14 days gap for healthy people. CDC America recommends severely immunosuppressed people like me should isolate for at least 20 days because we shed virus for longer. Bearing everything in mind I'm now rebooked for end February (checkup) and end March (hygienist). #Dentist #NHS #Covid #immunosuppressed
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Got a letter for my first of two #shingles #vaccines. Severely #immunosuppressed people aged over 50 are being offered them from this year. An unpleasantly early appointment time, but at least the city centre should be fairly quiet. The appointment is for early January. Thanks to the #NHS #NHSScotland #NHSTayside #vaccine
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Latest #Covid (my 8th) and #flu (umpteenth) #vaccines acquired. Huge thanks to the friendly and efficient #NHSTayside staff and volunteers at #Dundee city centre #vaccination centre. Immensely grateful to get this, as someone who is severely #immunosuppressed. And is now thankfully generating antibodies. #NHS #NHSScotland
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You know the way you think about people who voted No to #TheVoice #Referendum2023? You perhaps think that through their choices when exercising their freedoms, they are contributing to the ongoing marginalisation and suffering of a minority group, who already have things hard as it is.
Right?
That's exactly how the #Immunocompromised #Immunosuppressed community thinks about you when you exercise your freedoms to participate in group activities without a #Mask.
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Relieved to be back on my strong #immunosuppression drug tonight, that keeps my frustratingly active life-threatening #neurological disease under control. But also grateful that I stopped the same drug for 2 weeks while I got through my first brush with #Covid. That helped my body cope with the #infection. But yup, feel safer tonight. #immunosuppressed #neuro
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7 days into #Covid, slowly #recovering. Still taste odd, snuffly, and sleeping phenomenally (even more than my normal neuro illness). But encouraged. Didn't get #antivirals tho #immunosuppressed cos didn't test positive on #LFT within 5 days (or at all) - my healthy husband who gave me the infection barely tested positive - looks like really low viral load for us, thankfully. But recovering. Honestly grateful to be managing so well in the circumstances. Our first time with Covid.
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Probably missing another fab #history #streaming workshop shortly. #Covid has hit my household for first time. Looks like very low viral load. I’m still negative #LFT but sure have it too. Sadly with neg LFT #immunosuppressed me can’t access #antivirals. But slowly recovering. Could have been much worse. I have temporarily paused my strong #immunosuppression drug.
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Here’s the list of eligible groups to receive a #Covid #booster #vaccine in the #UK in #Autumn 2023. Healthy people are restricted to only over 65s getting the booster. But younger people eligible on health grounds (including immunosuppression) are to get it, as are household contacts of #immunosuppressed people, and #carers. So eg my husband will get it again, as both my household contact and my registered carer. And I’ll get it (my 8th Covid vaccine). https://www.gov.uk/government/news/jcvi-advises-on-eligible-groups-for-2023-autumn-booster
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#Shingles #vaccination is being rolled out in the #UK to include anyone over 50 who is severely #immunosuppressed. So I can expect that this year too. Joy. Here is the Scottish Chief Medical Officer letter about it. Similar arrangements are being made in other parts of the UK. A non live #vaccine is to be used this time. https://www.sehd.scot.nhs.uk/details.asp?PublicationID=7924 #NHS #NHSScotland #Scotland #Shingrix
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Back home from my 7th (!) #Covid #vaccine. Huge thanks as always to the very efficient staff at the #Dundee vaccination centre. I need so many vaccines because I am severely #immunosuppressed and huge risk for a poor outcome from Covid. I am very lucky to be getting a good immune response to the vaccines. Very grateful to be getting them. Thanks #NHS.
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Checking my blood #oxygen levels. They’d dropped again, as I’m getting a rebound of my #cold (but not #Covid) #infection picked up at the dental hygienist 12 days ago. Also been feverish and having chills again. Much coughing. Sleeping difficult! A bit better today, oxygen levels are starting to go back up. I’m lucky I tend not to get chest infections, or bacterial things that need antibiotics. But I do tend to get bad upper respiratory viral infections extremely slow to clear. #immunosuppressed
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Just pushed my Spring #Booster (7th #Covid #vaccine) appointment back a week. I am still recovering from a #cold that I picked up at the dental hygienist two weeks ago, and that has affected severely #immunosuppressed me really badly. Not only would I still be #infectious, but I would also be very uncomfortable going there, and in my #mask to protect me and others. So pushed back a week. Got to be sensible. #dentist #NHS
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In my new study on World Trade Center Cough Syndrome, I found that #American news coverage devoted to #9/11 survivors' ailments skyrocketed during the #COVID19 #pandemic. #Journalists used the themes of #heroism and #patriotism that were prevalent in American reporting of the Sept. 11, 2001, attacks to reframe 9/11 #heroes and #survivors as #immunosuppressed and to encourage the public to stop the spread of COVID-19. #journalism #WTC #Pentagon https://journals.sagepub.com/doi/abs/10.1177/07395329231167370
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Reading re many people catching #Covid seemingly at the recent #Eastercon is making me more doubtful my husband and I can go to #Worldcon in #Glasgow in 2024. I'm severely #immunosuppressed, huge risk for Covid. We've been #shielding for most of 3 years to protect me. Not caught yet. We'd wear #masks but if too many other people don't and are infectious the risk of us catching is too high. With my medical situation it could kill me. We are both paid up attending members (reduced Scottish rate).
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First #haircut for 11 months, and huge thanks to a kind and caring #hairdresser who wore a #mask to protect severely #immunosuppressed me. I’m back to my long term short bob, which is quite a change after 3 years of long #hair, as I avoid haircuts due to the #covid #infection risk. But cool! And easy to look after. I do intend to grow it long again though before another cut in 9-12 months or so. But yup, cut now. Great chat too. Mucho thanks Sam. #Monifieth #Dundee #Angus #Scotland #hairdressers
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Asleep for 12 hours today #neuro - so grateful for brief awake, and did what wanted yesterday. I've just found in Scottish #Covid #vaccine appointments site I've my 7th Covid vaccine booked for June. I'm severely #immunosuppressed so due #SpringBooster and have had loads of extras. Sadly my #autoimmune brain disease is v unstable flaring with appalling neuro symptoms for 3 long months after every Covid vaccine. But vaccines could save my life. At least some months of respite yet. #NHS #Scotland
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Pleased to have made it through an #EyeTest with little change to my #prescription and best of all still no sign of #cataracts or #glaucoma despite 26 years of permanent #steroids. Also relieved as someone severely #immunosuppressed that the #optician and other staff were wearing #masks thus protecting themselves and patients. #NHS #Eyes
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Off to my first #hospital appointment in three years tomorrow. Slightly trepidatious, not least the risk of picking up #Covid there. But glad to be seeing a #rheumatologist again. The last few years have been torrid for me with constant #neurological flares. To be fair there isn’t much the rheumy can do to fix that in the current continuing fallout from the #pandemic. #NHS #Medicine #Immunosuppressed #Rheumatology
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On the day Evusheld is ruled out by NICE for immunosuppressed people in the UK here are my quick first thoughts https://vivdunstan.dreamwidth.org/355735.html With a link through from there to the full NICE announcement. #Covid #immunosuppressed #immunocompromised #UK #Evusheld #NHS #NICE
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Tomorrow #NICE will announce whether the preventative #Covid #antibody treatment #Evusheld will be rolled out via the #UK #NHS to #immunosuppressed people like me who have a reduced response to #vaccines. I am lucky I have some antibodies now, after 6 Covid vaccines. Many immunosuppressed have none. I am not optimistic NICE will approve. But hope they will. It could transform the lives of people who vaccines do little to protect. It has been used for these patient groups in many other countries.
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@cv_cev
😔 I feel this so much.
I’m #immunosuppressed and have a situation in my family like this.
II’m heart broken 💔
I’m ok not socialising, we’re used to it now and we’re #introverts But what about family members who thrive on socialising?
Can you ask them not to socialise if they’re in their late teens or 20’s? When life ‘is’ socialising? 😭
But their socialising could cost me my life?
#covid #shielding
#ActuallyAutistic @actuallyautistic -
The APPG is calling on all the #Forgotten500k, hospitals patient groups charities clinicians academics & private companies to take part in the inquiry into the UK response to & the impact of the Covid-19 pandemic on the immunocompromised & immunosuppressed
➡️ Deadline:17 January 2023 ⬅️
Sources/further information:
https://twitter.com/APPG_VGP/status/1600499172033105926
https://appg-vulnerablegroups.org/news/post/uk-inquiry-into-forgotten500k-immunocompromised-patients
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The APPG is calling on all the #Forgotten500k, hospitals patient groups charities clinicians academics & private companies to take part in the inquiry into the UK response to & the impact of the Covid-19 pandemic on the immunocompromised & immunosuppressed
➡️ Deadline:17 January 2023 ⬅️
Sources/further information:
https://twitter.com/APPG_VGP/status/1600499172033105926
https://appg-vulnerablegroups.org/news/post/uk-inquiry-into-forgotten500k-immunocompromised-patients
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The APPG is calling on all the #Forgotten500k, hospitals patient groups charities clinicians academics & private companies to take part in the inquiry into the UK response to & the impact of the Covid-19 pandemic on the immunocompromised & immunosuppressed
➡️ Deadline:17 January 2023 ⬅️
Sources/further information:
https://twitter.com/APPG_VGP/status/1600499172033105926
https://appg-vulnerablegroups.org/news/post/uk-inquiry-into-forgotten500k-immunocompromised-patients
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@Maharg60 Not great news but actually even if the study is replicated I would take protection from 45% of variants #forgotten500k #evusheld4theuk #evusheld #immunosuppressed
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@Maharg60 Not great news but actually even if the study is replicated I would take protection from 45% of variants #forgotten500k #evusheld4theuk #evusheld #immunosuppressed
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CW: Antivirals NICE guidance
