She Who Copes
@SheWhoCopes
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Rocket scientist w keen interest in public policy & social justice. 🇺🇸 🇬🇧 🌈 #CleanTheAir #Resist #MEcfs #SaveTheNHS #KamalaHarris2024 🌊 #VoteBlue (USA)
Joined January 2017
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@BootstrapCook
It made me angry--you got it to the floor of Parliament (I signed your petition) & the Tories in particular treated hunger in the UK as a joke. Literally, I think. Am I correct in recalling that some MPs laughed during the debate?
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Anything that
@HC_Richardson
finds worthwhile is always worth paying attention to, such as this...
Watch this extraordinary denunciation of the modern Republican Party by Reagan's former solicitor general Charles Fried. He was born in Prague in 1935 and says today he hears "the same tunes -- and it scares me."
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@Squijibo
You helped. You can't expect to be perfect, but you stepped up as a good person. That's the most you can expect of yourself.
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@andrewgregory
How did you manage to especially fret about the rise in diabetes up to age 40 without even once mentioning it is well documented that
#COVID
can cause diabetes? It's impossible to properly look at the diabetes rise without taking that into account.
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@1goodtern
You have correctly surmised that most people talking about SARS2 evolving don't understand the theory of viral evolution (which HIV neatly supports). They pretty much have it backwards. Rampant lets it get worse. Mitigations push toward milder.
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@DebHolloway
So many decades after high school, I recognized that quote before you said where it is from. So very relevant to these times.
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@joaquinlife
One entire household of friends (2 adults, 3 children), five rounds of COVID infection.
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@jzellis
My wife finds wearing a respirator maddening & we won't go into an enclosed Petri dish like a movie theatre without respirators. It's expensive so we only went once or twice a year before, but no movie is worth ruining or shortening our lives. So we quit going to movies.
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@Deja_Great
@AbraarKaran
I don't see how we can get to herd immunity from infection with a virus that damages the immune system in ways that make re-infection easier. It's foolish to ignore damage to T-cells.
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@laurieallee
Moving to another country is hard to do & the one you choose can change. I moved to the UK. Climate change models show this as one of the better places for longest. But then the Tories came to power. It is now affectionately known as Plague Island.
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@ElectoralCommUK
@helenessex2
Could you possibly come up with a more dangerous policy? At the least, you *must* allow people who wear a face mask to go through their ID check outside with excellent ventilation, for their safety & that of polling station workers (who are often in a high risk age bracket).
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Americans, no matter where you vote, do as he did and check that your voter registration is still good.
I'm a registered Democrat in Texas. After seeing several other posts, I checked my registration. I'm "suspended." It says I can still vote if I update my information (it's already correct) but this has never happened in my 20 years of voting in Texas. Check your registration.
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@ales_frost
Many people with
#LongCOVID
will hide it if they can. Anyone with an 'invisible disability' or chronic illness will tell you that letting people at work know about it often turns out badly. I know at least 5 with
#LC
without even thinking hard.
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@F__CKTHETORIES
I'd probably wear something with toned-down language, but your shirt & mask perfectly convey my sentiments on the subject. Applause from me.
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@Raymartin55
Thank you for speaking up & standing your ground. Making fun of other people should not be okay.
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@1goodtern
What the USA Republicans are doing (crash everything during Dem Presidency) is not unlike what the UK Tories are doing (collapsing public services & strangling workers economically) ahead of anticipated Labour govt. Their biggest benefactors are the same. Not coincidence.
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@cjneet
It isn't intended to be fair or wise. It's intended to help the Tories win more in local elections in May & cull people they regard as unprofitable. We are going to have to protect ourselves as best we can.
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@DavidNoGOP
Thank you. I was brought up Republican, but not a straight-ticket voter. I remember when I could no longer vote for GOP candidates (years ago for me). It's a big step, but I had to put country over party. Grateful to you for doing the same.
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@TheTiniestMeep
Sorry to say yes that is a positive test. Viral load may be low which is in your favor. Treat the heck out of it, rest as much as you can for couple of months.
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@annaironside
Your neighbor is ace. I have one nearby. Only one but that's so much better than none.
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@StrategicThghts
@Sephoramoon
@nytimes
I also cancelled
@nytimes
a little while back. Occasional coverage I disagree with is to be expected, but I saw a pattern emerging that I am not willing to support. I'm not gonna pay to be gaslighted.
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@typo_cat
I am selective about the few news subscriptions I pay for.
@washingtonpost
is top of my short list. Plz let's pitch in & keep it going.
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@DrRachaelF
Rabies does not require a bite for transmission. Long ago a woman in Texas got it after removing a bone from her puppy's mouth. The puppy's saliva transmitted the virus through a hangnail. Was stunned to read about it in a science journal.
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@MajorDweeb
@joncoopertweets
@ElliLAnderson
Not long after I moved to UK over 15 years ago, it looked like EU was about to fall apart. Brexit shocked the remaining countries in the EU into pulling together a bit more, but not fully. Biden did a masterful job of providing info & *not trying to force EU's hand*. Well done.
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@HumorChronic
Specialist walked in, announced at the start, "I expect to diagnose you as depressed." I should have left. He ignored everything that didn't fit his idea & after I paid my entire file went missing.
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@clarejdaly
I hope you can get antivirals. I have yet to know anyone in the UK, including CEV who are supposedly eligible, to get any.
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@beantowndancer
@joaquinlife
We are all in the UK which doesn't push vaccination any more (especially for children), doesn't ventilate classrooms or use filters, etc. Anyone with a school-age child is exposed to COVID repeatedly. The kids bring it home. My friends haven't fully recovered & understand why.
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@1goodtern
I commented on that thread. Unexpected from that person. Our story: Just lost a family member. Got a chest infection in care home. Classic sx. Hospitalised, moved to SOURCE ISOLATION rm but no one ever said why... No testing for COVID or flu or anything else. Not on death certif.
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@ELHopkins
I voted by post. Wife & neighbour went together to vote & wore FFP3 respirators. As in May, they were recognised without needing to remove masks
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@amy_is_tired
Coenzyme Q10 is my keep-awake pill. I started out at 60 mg 25+ yrs ago. Dosage has crept up to 150 mg. If I don't have it in morning, I can't stay awake past noon. It's the most essential of my many supplements.
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@Dr2NisreenAlwan
Just went thru a business collapse made worse after male business partners didn't listen to me. At a conscious level they believe all the right things, but lifelong conditioning prevailed. I hear you about
#EveryDaySexism
. Maybe someday we'll get past it.
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@RealMed3
We get sympathy cards from the vet after a pet dies. It always does us so much good. I can't recall ever getting a sympathy card from a doctor after human death. Imagine how much good it would do--you have done something uncommonly kind. I hope you can continue to be kind.
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@1goodtern
Just from a technical perspective, that's the wrong way to roll out a new data processing system. Ideally old & new should run in parallel for a while--great for spotting discrepancies & bugs. Only switch over after the new system is known to be reliable.
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@Amy_Siskind
Not necessarily. Over here in the UK, the concern is that the convoy is fanning out & the Russians are about to encircle Kyiv, which would be a very bad development.
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@laurieallee
Scotland, Wales & N. Ireland often do a little better than England, but are constrained by Westminster. NHS is collapsing. Republic of Ireland is appealing & in the EU. Would be on my short list if I could go. Don't wait. Climate driven migrations are underway. Borders will close
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@MeddygLou
I am so sorry. So many people don't give a damn about anyone or anything except their short term wants, and people like your Dad end up paying for it.
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@LharaMullins
@Rachael_Rosanne
Dm me about the USA tools. Due to visit family there in Feb. Can look for replacements to bring back to UK & then get them to you in March.
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@chrischirp
Maybe you are being told that symptomatic hospital patients are being tested for Covid. I can tell you as a first hand witness in the past couple of weeks that it is not reliably happening. That data is not trustworthy.
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@DebHolloway
My wife is getting a will drawn up. Low cost due to a charity. Not powers of atty yet. Mine have been in place for years, complex due to dual citizenship so extra important. You & hubby are wise to do yours.
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@MamaSitaa__
Yes, one study found 49% of infections with SARS-CoV-2 were asymptomatic (didn't make people feel sick at the time). Rapid tests have been unreliable for many months, so false negative results are common. But the virus still does damage even if you aren't aware you have it.
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American
#LongCOVID
patients, please notice this. You'll be ignored for decades, like
#MEcfs
patients, unless you speak up at every opportunity like this. It's worth the crash you have after making the effort.
*Emergency Notice*
The FDA is holding a surprise meeting to talk about patient led Long COVID treatments.
They announced it yesterday, the event happens on the 25th...That's in 2 DAYS!
They want public comments & there are only 14.
You know what to do.
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@Dr2NisreenAlwan
The Tories also laughed when Jack Monroe's petition forced them to have to discuss hunger in the UK. They think starving constituents are funny. It is no big step to thinking ill or even dying constituents are funny.
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@kelcsimpkins
My wife asks this often. I know of multi projects around globe working on better vaccines. We need 2 traits: prevent infection & target portions of the virus that don't mutate much. Both are being pursued. At least 1 pan-coronavirus vax has been thru Phase 1 non-human trials.
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@strategywoman
Ukraine will still have whatever support the UK can offer, but our country is in serious trouble. Truss doesn't even seem to see what our problems are. She plans to take actions that will make our problems worse. That will limit how much we can do for anyone else.
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@WackwitzL
@j_g_allen
This is why my cousin parks her pickup truck with its camper shell outside the hospital when she goes to work. She spends her breaks in the camper away from everyone else.
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@CMoore79775922
@CovidDataReport
Some people find that rapid home tests are only showing positive for COVID if they swab differently from what any of the test instructions advise. Swabbing near saliva glands appears to be more useful now than nasal or back of throat swabs.
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@GeorgeTakei
No kidding re: inflation as a global phenomenon. UK would love to have USA's mere 4.2%. We're about half again above that. Supply chain & pandemic issues, mostly, with a dose of oil & gas pricing (& for Brits, Brexit as the cherry on top).
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@PleaseSavemich
Home tests are not reliable & you don't want to catch anything before surgery, even a genuine common cold. So keep up precautions
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@um70fb
@1goodtern
There are now a few studies of COVID impact on the brain. One of the first & best is the UK biobank brain scan study.
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@VoteGloriaJ
Good strategy. This is not a one-and-done thing. You are laying groundwork for the next step. I appreciate you more than I can express. You are decent & working for the good of the public. My rep is from Chattanooga. Need I say more?
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@h1w0rld
There are people looking for a c-conscious therapist. You will be there for them & other therapists' opinions about it don't matter. C-conscious therapist in Zoom sessions has saved someone dear to me.
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@ShaneyWright
@Wright1983Jon
Check the science journals. In late 1980s it was stunning to see the same scientists who delayed AIDS research pop up in the journals impeding research into CFS / ME. Several years later, money allocated by US Congress specifically for CFS research was diverted by CDC to measles.
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@Jonat2Go
@sumfthing
@Mikeggibbs
When my mother has major surgery, she arranges for one of us to bring 2 dozen bagels with cream cheese to each of the first 3 nursing shifts. She gets better attention & they are more willing to let us stay.
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@Carrie_McGinn
#MECFS
for about 35 yrs here, at high-functioning end of scale after the most acute period. You may not get all of mind back, but your brain will make new pathways, find new ways to do some things. Even w that, carry on w all adaptive tricks you find. They help. They're good.
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@ITV
@bevvyboo22
There is likely to be another scandal starting right under our noses now when blood or organs from COVID or Long COVID patients are given to people.
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@thisistheillme
My most C-conscious friend *tightened* her protocols this year. Most of my immed family are relatively careful, altho they loosed up somewhat. One sibling hasn't ever caught it as far as I know & we talk every week. You don't see us out & about much *because* we are C-conscious.
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@DcrInYYC
Small children around corner sick 2-3 weeks. Last week youngest couldn't wake up from nap. Ambulance called. No hospital then. Raging infection now, antibiotics not helping, in hospital. Last week niece last down in middle of her 7 yr b'day party to nap.
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@alexandrite113
Surfaces of your nails may also become grooved instead of smooth, as mine are. A small proportion of people with severe
#MECFS
lose their fingerprints. With so much else going wrong, it wouldn't be high on my worry list.
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@accord5speed
@healingfromlc
Some meds that HIV patients take to keep that virus down have proven in studies to greatly reduce the odds of the getting COVID. Big clue!
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@FourWinns298
When nonparalytic polio swept thru in summer, making people sick for weeks, it was mistakenly called summer flu. The term has been used to dismiss something serious before now.
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@SavingBooks
35+ years
#MECFS
here. Much overlap w
#LongCovid
. Never was good w mornings. Am often as you describe. Awful in morning, best in evening. FYI, most important pill for my functionality is Coenzyme Q10 (capsules, not gelcaps or tabs) in morning. Your Mileage May Vary YMMV.
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@1goodtern
Yes, including blood banks that didn't want to have to screen the blood supply. I recommend the book And The Band Played On.
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@dirrhope
C-cautious people know how bad it is. We have to stick with talking publicly about what we hope we might be able to get some other people to hear. In private you will find we know more than we say.
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@ravenscimaven
UK bought lots of vaccines & Paxlovid but hardly gave any to anyone, now discarding as it is all expiring. I mask which is rare. Ordering kids to school & people to work when sick. Even took best cough med off market as people get 100 day cough.
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@__Granuaile__
@bumblebuzz6
I am very sorry. I wish I knew something that would heal it all. All I can offer is a photo of a pretty nature reserve (Ynyslas in Wales). The subtle bands of rainbow colour only appeared for a few minutes.
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@KatePri14608408
As
#MEcfs
patient I cannot donate.
#LC
patients & c-positives probably shouldn't either. Pool of possible donors is shrinking. Without masking, it is shrinking extra fast.
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@AlyssaaErinn
@MEActNet
Thank you for this.
#LongCOVID
came in a more abrupt wave. It heavily hit doctors, nurses, frontline HCW... people not only well educated but specifically about health. Harder to dismiss such patients. All of that matters & may help get something done at last.
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@DrMLivingston
Wow, congrats to your daughter for being so intelligent, tough and persistent. We need more people like her.
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@CovidSolidarit1
I am sorry to see you (and too many others) going through this. Been there too. There is no easy way through it, sad to say. But you will gradually uncover how much of yourself you still have & will find new people who love you for who you are now.
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@ShaneyWright
ACT UP is how AIDS patients got attention, but they had energy & decent quality of life for years after a positive test. They could & did use that.
#LongCOVID
#ME
#CFS
& comparable illnesses often don't leave spare capacity for advocacy. It all has to go to personal survival.
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@Usnea13
@MelanieWeckert
I am still adamantly avoiding the C-virus. My wife is mostly careful. Tuesday I met outdoors with someone from Twitter whose entire household is C-cautious. You just don't see others like you because we aren't the ones running around maskless & posting photos of doing so.
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@violinvet
Altho it isn't common, I know a few
#MEcfs
patients who turned out to have something else. When it happens & is treatable, it's a big win. It's also possible to have something else alongside (masked by)
#MEcfs
. This doc is being serious about your health, which is a win by itself
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@MEFoggyDog
Definitely have your left breast checked. Dogs can smell changes long before humans can notice anything is different.
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@LarisaHockey
It sounds like you have wisely realized, only way to fight anything like
#LongCOVID
is to rest as much as you can & pace. At least you are in NZ where
#COVID
was not allowed to rip. You need not contend w a tsunami of other
#LC
patients. I hope you can get decent support.
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@_bahhumbug
Before my wife left her job for a new one that is entirely remote, she used to eat lunch in her car. Was understandably upset anytime her car had to go to a mechanic for the day & she didn't have it as a lunchroom.
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@naretevduorp
If you have read Democracy in Chains (Nancy MacLean), which is well supported by original source documentation... the late James Buchanan had much to do with setting up the intellectual framework & plan behind what Republicans are doing to concentrate power & wealth in an elite.
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@MeetJess
My wife struggles more with 'this is how life goes now' than I do. But she has sensory processing issues that make mask wearing harder for her.
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@urbanmel
USA expat in UK. IMHO those are all huge immediate threats, but in slightly longer term (not as long as most non-scientists think) climate change will eclipse all of them. In your list, H5N1 will be tops when it achieves airborne H2H spread. Until then, you've got the right order
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@thechronicchloe
I've never gone nearly as far down as you are & somehow kept working throughout. That took everything I had. Nearly all friends dropped away. Like you, I wrote stories for myself. For years, until remission, they were most of my friends. I nod to your imagined world.
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@SurvivingCFS
I used to know a
#mecfs
patient who worked from home proofreading dictionaries. Employer wanted accuracy, not speed. She distrusted her sense of whether spelling was right & checked everything. Perfect for the job.
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@GenX_BlueHippie
You may have to do what gay people have always done & gather a "chosen family" around you. We've long known that many other people would be happy to see us die. So we don't listen to them & invest ourselves in people with more compassion. You can do the same.
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@fearnley_k
@resiapretorius
@microbeminded2
@dbkell
@MBVanElzakker
As a 35+ year
#MECFS
patient I suspect your hypothesis may only be true for some
#LongCOVID
patients. For others,
#COVID
can be gone but permanent damage remains (espec in CNS) & weakened immune system allows formerly latent infections to run amok.
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@Sunshineside77
I am sorry. From the UK biobank brain scan study, it's obvious that this has to be happening to some people. But the reality of having it happen to you sucks.
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@ShaneyWright
#ME
&
#CFS
patients agree. The most you can do on your own is look for ways to dial down your inflammatory response, e.g. feverfew (properly prepared), turmeric (ramp-up takes months), diet (avoiding nightshade foods). Trial & error. At least until there are meds.
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@ADsmith46875763
@AlisaValdesRod1
@BhupeshPrusty
We'd have to go deep into the weeds about how
#MEcfs
&
#LongCOVID
resemble & don't resemble each other. For example, the UK biobank brain scans re:
#LC
look like a somewhat different pattern of damage.
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@gmf1369
@A_tothe_Z_Amber
@mari_moxy
@_agravely
@jackieResister
@markdinero1
@Butrflisnmytume
@KBall1971
@ThisOldBroad_
@PaulieG777
@LadyDom13
@dindin6
@rotterdamvvg
@Hilltop__Leader
@JanetBelcher19
@Resisting313392
@hilanj
@LoganJacki52512
@tbluvoter
@Jodythewittycat
@EverydayAilment
@StephensVina
@JenT32856335
@Beebuzzin19
@Teeshasmom2
@77SunnyAndClear
@MikiEff
@paparay49
@LSchwa
@RonaldCocks
@PapaRonToo1
@Dougieg633
@N1ke2_Tre
@SpartanRob75
@amandapowell315
@Dollhouse
@Holzer4Mo
@justamoderate
@mncricket
@Ll3600
@DNR914
@AZ_Brittney
@rrichterr
@PeMiHo1106
@adavaco
@AnotherRobbins
@Mad_Massimo1
@dodie712
@tazinib1
@mss_ssmichael
Thanks, I'm a little slow to respond right now (up to my ears in something) but appreciate the boost & the list of more good people.
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@allicat76
@beantowndancer
@joaquinlife
I said earlier, the adults mask diligently whenever they must go out & minimise their ventures to anywhere. Breadwinner works from home. But they have 3 kids. No masks are worn in schools. Poor ventilation. No filtration. Not much vaccine. So kids share everything & bring it home
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@DrTomFrieden
@Cali4niaCarolyn
I upgraded to FFP2 (like N95) face masks almost a year ago. I wouldn't get KN95 due to high incidence of fakes that don't actually perform to the standard. With Omicron circulating, upgrading to N99/FFP3 may be next for me.
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@gggirl924
It may be as simple as your tire losing a balancing weight, so first step is to check tire balance. Next is to check alignment. After that, check the suspension (the worst possibility that comes to mind). Minimize how much you drive until it's resolved. It can be safety critical.
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@Oldboatie
In our household, we vote for the candidate in our general part of the spectrum that has the best chance of winning. Our area ousted 100 yrs of Tory MP that way in a byelection. We got a Lib Dem & she is attentive, responsive, all we could hope for.
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@Inadarkwood
Wife & I have remarked 2020 was scarier but psych'y less hard for us, more sense of community etc. This interlude will end when too many people are dead/disabled or next pandemic hits on top of this one. We're dancing at the edge of the latter. Try
@covidmeetupscom
until then?
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@lsthart
About 20 yrs ago I first began to see sci articles about hardening of the arteries really being a response to inflammation in the walls of blood vessels, patching spots where a pocket of inflammation ruptured. So you're right, inflammation is the main cardiovascular villain.
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