Discover and read the best of Twitter Threads about #pans

Most recents (11)

This is the kind of paternalistic, unscientific nonsense that #MECFS #Lyme #Fibromyalgia #HSD #POTS #MCAS #Pandas #Pans #EDS #VaccineInjured #FQtoxicity patients have endured for decades. Now it’s the turn of #LongCovid
I’m going to make an offer to our colleague. Hopefully @DrKGregorovic can convey this message as I am blocked. Happy to have a Zoom coffee with both of you. We can examine
-the paper @awgaffney has tweeted & discuss the flaws
-the evidence for biomedical causation in #MECFS & LC
-the evidence for the ‘false sickness beliefs’
-the quality of the studies advocating exercise & talking therapies
-studies looking at the outcome of exercise in #MECFS & #LongCovid populations
-cardiovascular & other outcomes in #LongCovid

I think that is fair? Let me know
Read 6 tweets
Been experimenting with a brief monthly round-up of publications (peer-reviewed & media articles) that may be interest #PANS #PANDAS community. Small scale stuff, but there may be scope to turn this into a mail list so all the links would conveniently arrive in your inbox 1/n
March's round-up illustrated in the two jpegs above. Thank you @np9000 for being my wingman!
OCD in Pans/Pandas in Children: In Search of a Qualified Treatment; a Systematic Review & Metanalysis. Cocuzza, et al. Children 9, no. 2 (2022).…
There follows:
Neuroinflammation in a Rat Model of Tourette Syndrome. Zhongling, Ke, Chen Yanhui, Chen Guofeng, and Liu Yanyan. Original Research, Frontiers in Behavioral Neuroscience 16 (2022).…
Read 17 tweets
💈On the day the @ons report 26,000 CYP have symptoms for at least a year (⬆️ 3000 from last mth)
we received an email from @10DowningStreet in response to our visit on April 1st
It confirms the concerns of the children⬇️

"We feel ignored"


April 1st - 12 #children living with #LongCovid traveled
to #london to deliver their own letters documenting their #pain, loss of #sight, #mobility, organ damage, diagnosis of #PANS #MECFS #FND #POTS #MCAS and the detrimental impact it has had on their lives.

100+ page guide providing evidence-based information on #LongCovid in CYP from industry experts, research, and statistics from @GOVUK @ONS.
Did anyone read it?
We were assured @BorisJohnson would receive it.

Read 13 tweets
1/14🧵 ⭐️ It’s a little late on a Monday but still time for a public service announcement about MAST CELL ACTIVATION SYNDROME (MCAS) ⭐️ If someone tells you it’s not real it’s because they lack knowledge…
2/ MCAS is when mast cells Ⓜ️ inappropriately release histamine and other chemicals resulting in multi-system symptoms. 🔥sometimes they release too much, sometimes at the wrong time. They get a little confused 😐
3/ we need mast cells- they are our first line of defence (innate immune system) and located in most systems in the body. If you are stung by a bee and it’s red and itchy- that’s histamine release from mast cells Ⓜ️
Read 16 tweets
It has been an honour to walk alongside my friend & colleague of 21 years @BinitaKane & her daughter Jasmin on their courageous & inspiring journey. #LongCovid in adults children is real & serious. There are treatments available- sadly only for a fortunate few #TeamClots 1/n
(Everything I say is with the express permission of @BinitaKane). Jasmin is not the only child with #LongCovid who has been shown to have microclots & hyperactivated platelets. They are a consistent finding in kids & adults who have travelled for treatment to Germany & SA 2/n
Globally 100m are affected by this vile illness. In the U.K. alone this figure is estimated to be 1.8m, with 2/3rds reporting an adverse impact on their daily activities. 1% of primary & 2.7% of secondary school children fulfilled the criteria for #LongCovidKids 3/n
Read 17 tweets
The British Association of Social Workers have published Fabricated & Induced Illness & Perplexing Presentations Practice Guide…
(PP ~ MUS) 🧵1/20
@doctorasadkhan @NurseDiane2020 @PandasPans @LongCovidKids @FiGullonScott @BASW_UK
This well-considered & positive document provides guidance to social workers (SW) to enable them to adopt professional curiosity & respond ethically to FII concerns. The following points are some that I feel are relevant to #PANS #PANDAS #LongCovid #MECFS #EDS communities 2/20
lt is recommended SW need to be aware of the lack of evidence for currently used indicators for FII & perplexing presentations and the high incidence of these indicators identifying children where illness is neither fabricated or induced #PANS #PANDAS #MECFS #EDS #LongCovid 3/20
Read 20 tweets
1) This is Ethan, now aged 15, and ill for 18 months. He would like to be listened to and believed. He is certain that he is not anxious and that he definitely does not have "anything to gain" from debilitating daily symptoms.

#AlwaysOurBabies #LongCovidKids #BacktoSchool2021 Image
2) Anna caught #covid in April 2020, 4 weeks later she had a terrifying "inflammatory response" & was so ill. The hospital refused to see her. She has #covid triggered #CFS & #PANS & been ill since. She's not the same happy, energetic little girl she was. 💔 #AlwaysOurBabies Image
3) This is Evie Mae, it doesn't seem two minutes ago that she was this little.
Now she's 13 and towers above me. Evie says she's tired of being tired.
Evie Mae has crippling #longcovid.
#longcovid #BacktoSchool2021
#longcovidkids #AlwaysOurBabies Image
Read 15 tweets
1) #longcovidkids Group post.

16 mths of fighting to get a diagnosis.

“Finally had in writing confirmation today from my kids #neurologist to my #GP that they both have #PIMS / #MISC, along with #postcovid immune mediated neuropsychological syndrome/#PANS and #longcovid,
2) Took 16 months of fighting for them to get heard!! How many of our children have some form of PIMS/MISC that has gone unacknowledged and untreated for so long!

I think there’s so many unrecognised by medics to greater or lesser degrees but it’s all the same
3) - Inflammation & immune mediated response!
My children had a 40 + temp for 3 wks solid and dangerously low oxygen levels (85%) and struggled to breathe every day, blue lighted to hosp yet medics couldn’t wait to get us out and gave us virtually no help. I
Read 7 tweets
Several children in our group have had a diagnosis #PANS triggered by Covid infection.

💙PANS = Paediatric Acute-onset Neuropsychiatric Syndrome💙

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.
In very young children, #OCD can display as intense anxiety or fears.

Symptoms can be extremely alarming:
👉Anxiety/depressive moods
👉Aggression and/or irritability
👉Severely oppositional behaviour/regression
👉Sensory & motor abnormalities
👉Hallucinations and/or psychosis
Read 5 tweets
#Aadhaar is a merely a number that is assigned to demographic and biometric data that is never certified, verified, or audited by anyone.

Why then is everyone being coerced to get an Aadhaar and link it to a PAN that already provides verified tax history?

This thread reports: Thread explaining the curious case of the PAN-Aadhaar LinkagAadhaar is not unique, is not certified, verified, or audite
In 2017 there were only 1,544 fake #PAN numbers according Minister of State for Finance, Santosh Kumar Gangwar, then @FinMinIndia,
When Former Supreme Court Justice, P.B. Sawant had already highlighted that there are at least 580 million (58 crore) suspect #Aadhaar cards why would @finminIndia and @cbdt want to link #PAN to Aadhaar which increases the chance of fake PANs?… At least 58 crore Aadhaar numbers are suspected fakes and ha
Read 43 tweets
#EPWConversations: Today, @AnupamSaraph and @sanjana_krishn will be talking about their work on PAN and Aadhaar linkage from epw_in’s handle. We invite you to join the conversation and ask questions. They will present their paper in this #thread.
Also, you can view their responses to questions and comments in this thread:
Why is it curious that Ministry of Finances insists to link #Aadhaar with #PAN? The ministry has not made public any information leading to the decision to introduce #139AA that mandates quoting #Aadhaar to obtain a #PAN or to file return of income…
Read 48 tweets

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