Gaslighting can even come from those closest to you.
"But you look fine"
"I can't understand why you're not better yet"
"How can you be tired, you sleep until midday".
Tomorrow, Anna & I, & some of the @LongCovidKids team will attend a @ScotParl Reception hosted by @ALLIANCEScot to celebrate ours & others work around self management.
Courtney, 13, had #Covid19 in March '20 (+ve PCR in hospital) and developed #LongCovid.
She had #COVID19 again in March '22 and her condition has significantly worsened.
The family have no support. Can you help? #LongCovidKids
"The paediatrician told me she'd recover fully within 6months, then it was 12 months, 18 months, and on 11th May he tells us there's no cure & no treatment & she's as good as she can be. But after 2nd #covid infection she's worse than what she was." #LongCovidKids#LongCovid
"She had a trial medication, which made no difference. Her mobility has seriously decreased. I get no help from @FifeCouncil. She's already registered visually disabled & we have nobody to help her. I'm on my own with her."
🏴 "updated" their testing prerequisites. Sort of. Not really.
We have a similar issue in 🏴
📚HYPOTHETICAL STORYTIME📚
I'm a 10yr old with a sore tummy, runny nose & headache. My classmate just tested positive for #COVID19. I'm not classed as a close contact. LFD is -ve.
But I feel poorly & I sit on table close to +ve classmate. Prob best to PCR, right?
Mum goes to book PCR on @scotgov NHS Inform & runs into a problem. My symptoms of sore tummy, runny nose & headache are not listed, I'm not a "close contact" & LFD -ve.
So mum continues through the questionnaire and answers truthfully.
Oh. I can't get a PCR & told to LFD again. Even though I don't feel well, have symptoms of #COVID19#DeltaVariant (that are not on the website) and have been close to a +ve case.
We are concerned @jasonleitch feels that parent advocate groups for either side of the argument are extremists.
~It's either the "UsForThem lot" shouting to give kids their freedom & open up, or the other ones shouting 'stop letting the virus spread, you're killing our kids.'~
There are ~4000 children in our group & very few have recovered. The majority of them have now passed the 12 month mark & are still debilitated.
Here are some of the children in our group who are suffering daily symptoms. Symptoms that are not in the least bit trivial. Their lives have been turned upside down as they now attempt to live with #longcovid. We don't know if/when they will get better.
TL;DR
👉~14% of people who catch covid-19 end up with lasting symptoms: ~25 million people worldwide.
👉Could be big underestimate - less than 10% of infections detected - true figure could be nearer 250 million.
👉No universally agreed definition.
👉NIHR divide #LongCovid into 4 groups: those with after-effects of ventilation; those with organ damage caused by #SARSCoV2; those with post-viral fatigue syndrome; miscellaneous group that the authors call those with long-term covid syndrome.
👉One puzzling feature: those most prone to long covid aren't those most likely to get sick from the initial infection.
👉women 30% more likely to get it than men
👉35 to 69-year-olds are the age group most often affected (ONS)
👉WHO working to agree a clinical case definition.
A sudden onset of:
👉 OCD symptoms and/or severe eating restrictions
👉 Cognitive, behavioural, neurological symptoms (at least 2)
😢"It’s like my child woke up as a
completely different person!"😢
#PANS kids display a dramatic personality
change, some #OCD, tics or issues with
food, together with a number of other symptoms
usually following some kind of infection.