Elizabeth J

It's just not true that strokes were 'unheard of' in young people pre 2020. I've been supporting families who go through this stuff for decades now. They were rare, yes. And they're not so rare now. I know. This will get shared far less than the posts that oversimplify things.

Getting frustrated with the number of odd ingredients being sneaked into food. Since when, @marksandspencer has it been necessary to check that an ordinary loaf of white bread does not contain chicory fibre?

Why am I getting SOOO many of the silly, long clickbait stories in my feed recently? How do I stop them? Anyone else?

@sf_lang Don't get me started... What about the whole verb/noun confusion which resulted in to CONtribute and to DIStribute? What maddens me is that my ears are beginning to boss my brain around and I am occasionally saying these things too.

When did people start pronouncing the T in 'often' and the L in 'almond'? How did 'advertisement' become 'advertISEment'? And when did 'forehead' become FOREhead? Who first mispronounces these things, and why does it spread?

@PacoOnPause Not sure if husband has just Lyme set off by covid or LC as well but weakness in his quads has been a big symptom from the beginning. Lyme treatment has helped generally but weakness in quads is stubborn.

1. Has anyone else with LC been having trouble with their quads? 2. If so, has anything helped? This started within the last year. If I bend or squat, like if I try to garden, they can hurt for days or even weeks.

@Read_Meee Imo this isn't about right and wrong but about unmet (and unrecognised) needs. For some reason your mum needed the contact (more lonely for some reason?) and you didn't realise so didn't meet that need. Now you do know and can take more care in future.

My mom cried on her birthday because I waited until 5:30 PM to call her. Yeah, you read that right. I'm 30, she's 74. I finished work, picked up the phone, and wished her a happy birthday. To me, that's a normal evening call. But she was so upset I hadn't called or texted earlier that day, she actually started crying on the phone. Now I feel like the absolute worst person for making her emotional on her special day, but I'm also really taken aback by the whole thing. Was I in the wrong?

10 years ago my wife, the mum of our kids & the MP for Batley&Spen was killed by a far right extremist. At anniversaries I try to be optimistic about the future. But not this time. In the ten years since she was killed we have gone backwards & I fear our democracy is now at risk

“My baby had Covid and was fine” Did your baby tell you how their endothelial function, immune system & neurodevelopment are doing compared to baseline? Did they explain their risk profile for future disease? Or are you just guessing because they didn’t drop dead on the spot?

What am I seeing? - Reduced empathy - Increased aggression - Rising support for authoritarianism - Declining critical thinking - Less moral inhibition - Rising disinhibition & antisocial behavior - Lack of focus/commitment - Frequent memory lapses - Increased impulsivity

I see at least 3 people a week (adults and children) in my two long shifts whose health and lives have been altered by what happened with Covid. I have nowhere to send them. We have no POTS service, no long covid service that was helpful, and paeds seem to tell them there is nothing wrong (and pots isn’t real)

@MrDavX 99

EYE TEST! TILL NOW NOBODY IS YET TO GET IT THE ANSWER IS NOT 95 What number do you see? LEVEL- VERY HARD Nobody is yet to find the number 👀

@Drjimwood65 @DrSdeG @Mary_Tom11 And novel coronavirus killing millions worldwide over 6 years, still killing and causing long-term effects and ... Do not stay off work if infected and infectious.

@DrSdeG @Mary_Tom11 Funny isn’t it, hantavirus on a cruise ship killing three - national comms to all GP practices and mandatory plans put in place. Ebola outbreak killing hundreds and … tumbleweed.

Right peeps, is there an actual plan for if we see someone who meets the Ebola risk factors and is symptomatic. Last time it was “lock them in the loo until help comes” Do we have anything more sophisticated than that? And who do we call for help?

@1goodtern @LongCovidHell Add Lyme to the list of conditions where this approach is useful.

A friend passed this to me, saying it might be helpful - it's about getting help on Long Covid from your GP, it's for a UK setting, but some of it will be applicable anywhere - read the note at the end for more too. "I work in AI. I used it to research and write my mum a letter about her Long COVID. Her GP called her the next day after 3 years of being dismissed! *Reposting here as myself since it blew up in another support group and people really want help with this… feel free to add/DM me.* So I work in AI, specifically in healthcare tech. So when my mum had been fobbed off by her GP for the third year in a row about her Long COVID, I figured I should actually do something useful with what I know. This isn't about gaming the system or bending rules. Everything I'm sharing here is publicly available on NHS and government websites. I just used AI to find it, understand it, and turn it into something a GP couldn't easily brush off. Here's what most people don't know. The NHS publishes detailed guidelines that GPs are expected to follow. NICE published a specific Long COVID guideline called NG188 that sets out exactly what a GP has to do when a patient comes to them with ongoing post-Covid symptoms. Most patients have never heard of it. Most GPs don't follow it unless someone pushes them on it. The other thing most people don't know: verbal dismissal is easy to ignore. A formal written letter that references specific guidelines creates a paper trail. The GP now has a documented duty of care they're expected to respond to. It genuinely changes everything. My mum is 61. Not remotely tech savvy. She would never have found any of this herself. I spent about 20 minutes using AI to pull the relevant guidelines, match them to her situation, and draft a letter. She sent it to her GP by email on a Tuesday. Her GP called her on Wednesday afternoon. First time in three years a GP had called her. She now has a referral to a Long Covid clinic and a written management plan, after years of being told it was probably anxiety or just her age. Posting her letter below with her details redacted. Copy it, adapt it to your situation, send it by email not in person. You need a timestamp. You need a record. That's what actually forces a response. ─── [Her letter, personal details redacted] ████████████████ ████████████████ ████████, ██████ ██ ██████ 2025 Dr ████████████ ████████████ Surgery ████████████████ ████████, ██████ Re: Formal written request for Long COVID assessment and personalised management plan Dear Dr ████████, I am writing to formally request appropriate assessment and management for post-COVID-19 syndrome (Long COVID), and to create a written record of this request for my medical file. I contracted COVID-19 in ████████ 2022 and have experienced the following ongoing symptoms for over three years: • Severe fatigue and post-exertional malaise, symptoms worsen significantly following any physical or cognitive exertion • Cognitive dysfunction, difficulty with memory, concentration, and word retrieval • Breathlessness disproportionate to exertion • Heart palpitations and episodes of tachycardia • Disrupted sleep despite significant fatigue • Generalised pain and joint discomfort These symptoms have substantially impaired my ability to work, maintain daily activities, and quality of life. CLINICAL BASIS FOR THIS REQUEST NICE guideline NG188, COVID-19 rapid guideline: managing the long-term effects of COVID-19, was developed jointly by NICE, SIGN and the Royal College of General Practitioners. It applies to any patient with new or ongoing symptoms four or more weeks after acute COVID-19. Under NG188 section 5.2.1, GPs are expected to use a multidisciplinary approach to guide rehabilitation, including physical, psychological and psychiatric aspects of management. Under NG188 section 5.2.2, GPs must work with the patient to develop a personalised rehabilitation and management plan, which must be recorded in writing. NICE states explicitly that healthcare professionals are expected to take this guideline fully into account. This is not optional guidance. Under GMC Good Medical Practice (2024), where a GP cannot adequately manage a patient's condition, they are required to refer to a specialist with the relevant expertise. Under the NHS Constitution, I have the right to be referred to an appropriate specialist where my GP is unable to provide the required clinical management. I have not received a personalised management plan or specialist referral in three years of presenting with these symptoms. WHAT I AM FORMALLY REQUESTING 1. A holistic clinical assessment consistent with NICE NG188, including physical, psychological and functional domains 2. A personalised rehabilitation and management plan recorded in writing, as required under NICE NG188 section 5.2.2 3. Referral to the Long COVID clinic or appropriate multidisciplinary rehabilitation service 4. A written response to this letter within 14 days I would like this letter to be added to my medical record. I am not requesting anything outside published NHS guidelines. I am asking for what those guidelines state I am entitled to receive. Yours sincerely, ████████████████ Date of birth: ██/██/████ NHS number: ███ ███ ████ Based on: NICE NG188 (January 2024) | GMC Good Medical Practice (2024) | NHS Constitution (2023) *Verify current guidelines at nice.org.uk before sending.* ─── Same approach works for basically any condition where you're being dismissed. MCAS (I am currently writing myself a letter to escalate my own issues with this), fibromyalgia, EDS, POTS, chronic fatigue. The escalation pathways exist for all of them, most people just don't know how to use them. If it’s useful I could build a tool that does this automatically for you. You answer a few questions about your condition, it finds the relevant guidelines and drafts the letter for you. If that sounds useful, DM me or comment. Happy to write one manually for anyone in the meantime. Not medical advice! Keep seeing your GP. Call 111 if anything gets worse."

Imagine trying to understand why a house keeps filling with water whilst refusing to acknowledge the tap is still running. To the point where anyone suggesting the tap needs turning off is deemed an extremist. That is roughly the level of analysis being applied to COVID in 2026.

@Ravenismeee Yesterday. Haven't got going today.

Be honest… when was the last time you wrote something with a pen on paper ??

@DebsFrazer @NHS Is this new or something that's happened to you before? Are you aware of what the injury was? Much sympathy heading your way...

Have hurt my back. Can hardly walk. Rang drs for appt. 5th in q. Now all done on app. But not emergencies. Rang back. 11th in q. Still has to go through app. Offered appt with musculoskeletal specialist on 29th. @NHS what is going on?

@Sharpr1966 How my mother made it. I made it just a couple of weeks ago. My mother used to have it with oatmeal cakes in the war when there was not enough meat.

Have a craving for mint sauce as I knew it as a child. Loads of fresh mint chopped with sugar, boiling water added followed by salt and vinegar. Is that just a Dales thing or was it everywhere?

It is psychologically easier for society to believe children suddenly damaged themselves with iPads than to confront the possibility that adults collectively failed to protect developing brains during an ongoing airborne pandemic This is all about shifting blame & responsibility

@omgsidewalks Beryl

Saw a patient today with a hemoglobin of 1.9 g/dL. For context, a level that low is almost incompatible with normal consciousness, but she walked right into the clinic on her own feet. For three long years, she lived with crushing weakness and since last 6 months breathlessness from just walking across a room. Why didn’t she get help sooner? At first, it was because the kids had crucial school exams and later her husband was reluctant to deal with the hassle of a hospital admission. Her health was treated as a background inconvenience. When we dug deeper, it got worse. A year ago, her Hb was 6.4 g/dL. A doctor explicitly told them she needed immediate admission. The family refused, walked out with a basic strip of iron tablets, she took them for two weeks, forgot about them, and nobody in the house ever bothered to check on her or remind her. She didn't even come to the hospital today because of the air hunger. She came because her periods had completely stopped for months. Her body was so profoundly starved of iron and oxygen that it literally shut down her reproductive axis just to divert what little blood she had left to her heart and brain. It’s completely heartbreaking. A woman will literally bleed her body dry, gasp for air for years and keep working silently, only to be brought to a doctor when her normal functioning stops. Please check on the women in your homes. Stop letting them normalize chronic exhaustion.