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@skeuomorphology @1goodtern @brownecfm oh thank you! I wasnt aware of these other tools 🙏 I wonder why the WHO/CERN tool is down, hopefully only temporary 🤞

@pheob289 @1goodtern @brownecfm Not familiar with it, but it does look down. Jose-Luis Jiminez's tool is still available cires1.colorado.edu/jimenez/ as is the simplified National Geographic version nationalgeographic.com/science/articl…

Is the WHO Aria tool still available? I can't access it at the usual address partnersplatform.who.int/tools/aria @1goodtern @brownecfm @skeuomorphology

I’m disabled and sick. I have epilepsy, severe ME and POTS, and an autoimmune disease. In 9 days, I will be at risk of eviction. I will have no where to go. Please, even a share could help PayPal: hannahcampjohnson Ven: hannahliz1129 CA: itsmeliz1129 gofund.me/0f48bb7b0

@Gmwetz Yes I have this too, it's too much to process or too much energy to both look someone in the eyes/face and read their expressions and also think about what I'm saying, so I have to look away. Mostly in group settings or places with background noise or talking about emotions

I have strange symptom - maybe you can help me to link it to some potential root causes When I feel bad or have a flare up - I find it very hard and difficult to look other people in their eyes. If I feel better, I don’t have that. What the hell is behind this ?

HEALTH UPDATE: Hi everyone. I’m resharing my fundraiser because my situation at home has become unsustainable for a long time. I’m trying to move out and I will need as much help as I can get. #solidarity #mecfs #pwme gogetfunding.com/support-katian…

@angryhacademic they did do more in depth autonomic tests than my first ttt though, like orthostatic catecholamines, valsalva, ice pack on hand and a few other bits

@angryhacademic Anything like QSART or testing for autoimmune autonominc ganglionopathy i think you need more 'unusual' presentation, is my impression.

Well, I've written a big ol' letter back to UCLH with the following corrections: 1. I have not had COVID & therefore don't have "post-COVID-19 syndrome" 2. I have ME not "chronic fatigue syndrome" 3. I've never knowingly been diagnosed with "anxiety" 🧵

@1goodtern Did they ever include this code in deaths? If so, when did it change?

But I actually have a new respect for the healthcare workers who keep plugging U07.3 into the computer. Thank you. You matter. ❤️

😮I want to smash something. I've just stumbled across the official NHS coding guidance for U07.3 - 'Personal history of Covid-19' - and it left me on the floor. 🚨When paired with the data on the number of times it is currently used, it is a huge unknown national scandal.

Would appreciate shares and support for my friend Mari who is enduring severe ME alongside DV and continues to deteriorate. We’ve launched a GFM so she can safely escape but we need help sharing it 💜 Gofundme.com/marigfm #MEAwareness #SevereME #MECFS

@cymru_inquiry @SafeDavid3 I had been wondering what came of the Pegasus exercise!

We were part of a Pegasus focus group held after the Exercise and told the Exercise virus was transmitted via the respiratory route, I immediately asked for clarification as to whether that meant aerosol or droplet. After some delay I was told both. So it will be interesting to see when the report comes out how they prepped and mitigated for aerosol. It’s surprising they didn’t immediately know as of course the mitigations would be quite different.

🚨🚨🚨 CATA Press Release 🚨🚨🚨 tinyurl.com/328hn3pb

A friend's just spent 3 weeks in the ICU with covid, and got out last week. No relevant vulnerabilities & not old. Not eligible for a booster. They're lucky to have got out. I tell you this because the public seem to think this doesn't happen anymore. 10/11

"Once we experience the benefits of clean indoor air – imagine getting through winter without needing to take time off work or school – we’ll never want to go back." What a great article by @AmandaKvalsvig Link in tweet below...

Question for the #MECFS community: what/who are the best resources for advocacy for someone with #severeME in an urgent situation? E. G. For helping advocate with social care & other services? TIA 🙏🏻

@EllaRobertaFdn Maybe you already know but Ella was mentioned recently at the end of a podcast episode about the Great Smog of London. The podcast is called Short History Of.

This to will pass indeed. I will be asking the UN to support #EllasLaw my final act before I bow out gracefully.

Interested in contributing your expertise on health inequalities, sustainability, climate change, social care or housing? RCPE is seeking a new Lay Advisor to join our high-level group of non-medically qualified individuals who advise and guide the work of the College and its aims as set out in its strategy. Find out more and apply: rcpe.ac.uk/college/vacanc…

@_CatintheHat @ginni_bb @NHSuk @UKHSA is there any update on this? are people getting the updated forumlation at private pharmacies?

@ginni_bb @NHSuk @UKHSA In the U.K., I think it’s pretty much all Pfizer (Comirnaty) in this Autumn’s booster campaign. If you’re eligible for a free NHS booster, then anyone over the age of 12 yrs will get the KP.2 formulation. If you go private, I think you may be able to get the LP.8.1 formulation.

From today, everyone who is eligible can get their NHS COVID-19 and flu vaccines. You can book an appointment via the NHS App, your local GP practice, online or by calling 119. Read more ➡️ nhs.uk/wintervaccinat…

@singingsox I think lowering HR means that more blood can be pumped with each beat, instead of when you're in tachy it's pumping too quickly to be able to fill properly between each beat.

If the reason many of us w hEDS/POTS are tachycardic is bc the brain is crying out for more bloodflow, wouldn’t lowering the heart rate make that problem worse? I also wonder if it could help with more restorative sleep, though, since being supine helps with the above already

Propranolol experiences? Picked it up yesterday, but haven’t tried it yet. It’s “as needed”, so idk if I should try to prevent tachycardia, or if I should wait until it happens (lol which is p much whenever I’m doing anything 🙃). I also wonder how this will affect brain fog?

@hazardscampaign @1goodtern @SafeDavid3 @cv_cev @barryjmjones @YouAreLobbyLud thanks everyone for your valuable info, i have passed it all on 🙏

Does anyone have any advice for friend who's potentially being denied an NHS job (has already been offered) because he wears a mask to protect wider family& friends? IC policy says he can't 😫@hazardscampaign @1goodtern @SafeDavid3 @cv_cev @barryjmjones @YouAreLobbyLud 🙏

@jneill @MayorofLondon @SmartAirFilters @SafeAirSchoolUK @EllaRobertaFdn @cv_cev @hazardscampaign @ThisHouseFresh @BBCNews @BBCLondonNews @susana_mendonca oh i think it is a CO2 monitor, it's just showing the temperature!

@jneill @MayorofLondon @SmartAirFilters @SafeAirSchoolUK @EllaRobertaFdn @cv_cev @hazardscampaign @ThisHouseFresh @BBCNews @BBCLondonNews @susana_mendonca Does anyone know what iaq monitors they went for? Do they monitor CO2 as well as pm2.5? I hope they are educating schools on all aspects of indoor air quality (infection control, allergies etc as well air pollution)

🌬️ HEPA air filters being rolled out to 200 London schools by @MayorofLondon @SmartAirFilters ‼️ 👏 @SafeAirSchoolUK @EllaRobertaFdn @cv_cev @hazardscampaign @ThisHouseFresh #SafeSchools #CleanAir #SafeAirSchools #CleanAirForAll via @BBCNews @BBCLondonNews @susana_mendonca