Susannah H

Mum. Carer for my son. Former English teacher. Researching bacterial and viral infection &symptoms #Lyme #ME #LongCovid #Pandas #Pans #Bartonella #Convalescence

[Stella Chadwick | Functional Medicine @stella_chadwick]

I was at a cardiology appointment with my mum today.

Not working. Just being a daughter.

The nurse picked up that I knew the lingo and asked what I do. I explained. Mentioned PANS and PANDAS.

She stopped and said “I’ve heard of that. Actually, I have a friend whose child changed overnight. Completely different child. No one could explain it.”

We talked about the Stanford and Columbia research, and the work we have planned ourselves.

At the end she said she was so glad she had met me - and that she wanted to mention it to her paediatric colleagues and hoped I might come and do a talk for them.

I was not expecting that today.

This is why awareness matters. Not just in the clinics treating these children. Everywhere. In cardiology departments. In GP waiting rooms. In school staffrooms.

This is how change happens - one unexpected conversation at a time.

If you’re a healthcare professional who wants to know more, my DMs are open.

#PANDAS
#PANS

[Lucy Easthope @LucyGoBag]

❤️ #PersonalEffects…Gloucestershire nurse's plea over 'impersonal' property bags - BBC News https://t.co/qh10x68tuQ

[Amy Rochlin @amyrochlin]

Another important study, from @VirusesImmunity @PutrinoLab @keylas3.

I've been talking a lot this week about neuroimmune signaling and why studying it may be central to conditions like Long COVID, ME/CFS, POTS, and related disorders.

This study represents a major advance in understanding how immune dysfunction can contribute to neurological symptoms in a subset of Long COVID patients.

A few findings stood out:

☑️Researchers found antibodies that targeted the brain, peripheral nerves, and other nervous system tissues.

☑️Antibody reactivity was associated with a range of neurological symptoms, including pain, dizziness, headache, cognitive symptoms, and sensory disturbances.

☑️Researchers isolated IgG from Long COVID patients and transferred it into healthy mice. The mice developed pain, fatigue-like behavior, balance problems, and muscle weakness.

☑️The antibodies caused small fiber nerve damage, a finding that aligns with symptoms commonly reported by patients.

☑️The antibodies activated brain regions involved in pain, fatigue, sensory processing, and cognition.

This work presents a clearer path toward understanding the biological mechanisms contributing to symptoms and can help lead to stronger subtypes.

Kudos and thanks to all who worked on the study. Let's keep research of this caliber going.

[Dr LG @subversivepsych]

Now imagine someone coming along and saying these mice need graded exercise therapy and CBT

[tern @1goodtern]

👇 *important thread*👇

[Cat in the Hat 🐈‍⬛ 🎩 🇬🇧 @_CatintheHat]

100% school attendance awards are unfair & irresponsible as they encourage sick kids to attend & spread their illness to others 🤧

Sick kids should NOT be penalised for staying home!

If you have views on this, pls fill in this short anonymous survey:
✍🏻 https://t.co/2B9fAoWVmm

[Naomi Fisher @naomicfisher]

This time of year, we put our 16-year-olds through a coming-of-age ritual. We make them sit in rows and write down things they have spent the last two years trying to memorise. We pit them against the clock, and prevent them from talking to each other. We tell them that this is the most important thing that they will ever do and their future life depends on it.

We don’t just do this once. For most of them, we make them sit in rows and write things down between twenty and thirty separate times in the space of about six weeks. Maths, English, History, French, Biology….Again and again, they have to keep at it. Each time, we tell them how important it is and they better not have an off-day or be ill.

Then we take their papers and we rank them. For some, the result will be accolades and glory. For others, failure and retakes.

We know for sure that this will always be true, because these rituals that we call exams are designed to rank them. A third will always fail. There would be no top grades if we didn’t also have the bottom. It isn’t possible for them all to pass.

And yet, every year, we talk as if this was not true. We pretend that it would be possible for them all to succeed, if only they and their teachers worked harder. Politicians talk about raising standards and accountability. We pretend that the problem is them not working hard enough, not an exam system designed so that hundreds of thousands fail. We blame them, not the exams.

For the truth is that we have a coming-of-age ritual for our teenagers which involves a third of them being told they haven’t met the grade, that they are not good enough. We launch them into adult life telling them that they will carry the stigma of not understanding quadratic equations for ever. We put them all through intense stress, and then when some of them cave in we say they have anxiety and send them to see a therapist.

And then we’re surprised when many of them say they just can’t carry on, that they don’t see the point. They don’t see potential in the future for themselves.

We need to take a step back and ask ourselves why we do this to our teenagers. For the problem isn’t our young people. It’s not their fault that a third of them fail and many are chronically stressed. The problem is what we make them do. We’ve designed a coming-of-age system with a very high cost in human misery.

Every year a new crop of teens will come of age, and despite their distress we just push them harder. We need to ask ourselves whether this is really the best we can do for our teenagers. We urgently need to think again.

[Adam @ABrokenBattery]

Chronic Fatigue Syndrome is a terrible name for a disease. It does not convey the severity or the nature of the condition.

“It trivialises and stigmatises the illness.” - Dr Anthony Komaroff

Repost for #MEAwarenessMonth - now optimised for phones.

[Susannah H @firebug70]

@LongCovidAdvoc Great ideas, thank you 🙏 🧊❄️

[Long Covid Advocacy 💙 @LongCovidAdvoc]

In the UK it is HOT & about to get hotter. 🥵

We've compiled our social media info about staying cool into a 101 for easy access.

Stay cool peeps 🧊

To Read: 👇
https://t.co/TvDhF0aHIN

[Action for Happiness @actionhappiness]

When people get together with a shared purpose, remarkable things can happen

Image: https://t.co/k68pooPqz6

[ME Research UK @MEResearchUK]

Many congratulations to Hollie Byrne, Sarah Knight and the team at Murdoch Children's Research Institute whose paper on hypothalamus connectivity in adolescent ME/CFS was recognised as a top viewed article in the Journal of Neuroscience Research. https://t.co/DgYZqgOuYP

[Lukas Barth @LukasBarth54728]

ME/CFS affects ~3.3 million Americans. 75% become too disabled to work or attend school.

Patients report among the lowest quality of life of any illness studied — yet NIH research funding amounts to roughly $4 per patient/year and there are 0 FDA-approved treatments.

This is a profound public health failure.

We urgently need:
• Major NIH funding increases proportional to disease burden (~500m/year)

@NIH @Surgeon_General @MEActNet

#mecfs #longCOVID

[Adam @ABrokenBattery]

Sleep hygiene can be just as “damaging as graded exercise” for patients with #MECFS

Dr Nigel Speight describes a girl with severe sleep reversal. She walked into hospital and was carried out a month later needing to be tube fed.

[Long Covid Advocacy 💙 @LongCovidAdvoc]

We are in the Meningitis B outbreak area with a teen in hospital from our school. 1 family has lost their child 🥺

3 colleges affected - private school has vac for all the yr group. State schools - nope.

If @UKHSA had offered national vac program?!

https://t.co/jkfjcq1jGs

[EndMalnutritioninME @MalnutritionME]

Please sign this petition. Many people with #ME are too ill to attend GPs' surgeries, outpatient appointments, or A&E.
https://t.co/CuNunRotr4

[ME Research UK @MEResearchUK]

This week is ME Awareness Week.
https://t.co/CWAQktIS58

Unrefreshing sleep is a common issue in ME/CFS, where a full night's sleep, doesn't leave one rested. There can also be other changes in sleep quality/quantity/patterns.

How does sleep dysfunction impact your daily life?👇

[PANDA Mama @PandaMama2024]

Not so much rare, but rarely diagnosed. #Pans #Pandas @CarrollJennifer @SimonHarrisTD
@MichealMartinTD @roinnslainte
Parliamentary event on rare diseases: "The EU can do more" https://t.co/SZT2FWUmrb

[Susannah H @firebug70]

@notestomyboy ❤️

[Satchin Panda @SatchinPanda]

The hypothalamus is key to circadian & hormonal balance—its dysfunction drives metabolic decline and aging.
Disrupted rhythms impair sleep, hormones & heart health.
Diseases like laminopathies reveal links between circadian disruption and accelerated aging. Chronotherapy may offer new solutions. #Aging #CircadianRhythm
https://t.co/PtQfYMhgxE