shelley-lee waller

Former journo/editor, advocate for health equity, mother of two teens (Korean adoptees), p/time worker in health - full time 🕵️‍♀️ sleuth of ME/POTS/MCAS/SjD

[shelley-lee waller @shellchat]

@hannahspierMD This could have been a question, an attempt to understand the experience of pts facing the worst kind of stigma on top of debilitating sx. Instead, the intellectually lazy punch-down. Our son never devotes time to explaining his illness 2 anyone. And yet, 12yrs on, still disabled

[shelley-lee waller @shellchat]

@Ramyisback Was your positioning different for both tests? Or both laying down with legs elevated at same height? I have L4/5/S1 damage & had upright radiology saying severe while mri (flat) said moderate with no nerve impingement. I think my hypermobility is factor in diff findings?

[Dr Monique Ryan MP @Mon4Kooyong]

The government's Senate inquiry into its planned decimation of the NDIS was open for only 2 weeks, but still received hundreds of submissions which are pretty much uniform in their opposition to the legislation.

A typical but remarkable example is the report from the government's own NDIS Reform Advisory Committee, which speaks to the 'genuine shock and incomprehension' about the proposed changes within the disability community. It comes to the same conclusion that I came to about this bill.

[ME/CFS Science @mecfsskeptic]

1) In this interview with David Tuller, Prof. Chris Ponting gave more info about the SequenceME & Long Covid project that received £4.75 million from the UK government.

It will measure the whole genome of ME/CFS patients in high resolution so that rare mutations can be found.

[shelley-lee waller @shellchat]

Pls share this. At GP last week, describing how doing too much, means next day “flare up of back pain”. Except, she anticipated me, inserting PEM. I just stared. “No, I don’t have ME/LC. I don’t get PEM.” I can’t believe it’s gone from not believed to ‘answer-to-everything’ !

[Adam @ABrokenBattery]

Post exertional malaise (PEM) is the hallmark symptom of #MECFS

It’s not fatigue following activity. It is a dramatic deterioration and worsening of symptoms.

Short video explainer - triggers, symptoms, and management.

Repost for the last day of #MEAwarenessMonth

[shelley-lee waller @shellchat]

@AndrewG76201347 @Yrrepmot Yes, same and same. Montelukast for son and me with inability to sleep without famotidine + ketotifen.

[Dr LG @subversivepsych]

“Passive transfer of IgG from individuals with LC into mice induced fatigue-like behavior, loss of balance/coordination, thermal hyperalgesia, small fiber nerve damage, and increased pain-related neuronal activity, recapitulating patients’ symptoms.”

[Carmen Scheibenbogen @C_Scheibenbogen]

Die Studie enthält auch neue Daten zu GPCR Autoantikörpern.
Es fanden sich LC-Untergruppen mit erhöhten Antikörpern gegen den Glutamatrezeptor NMDAR2C sowie gegen β1/β2-adrenerge, AT1- und ETA-Rezeptoren.
Das passt zu Befunden bei ME/CFS und spricht auch für autoimmune Untergruppen bei LC.

[shelley-lee waller @shellchat]

@dysclinic @NeurologistMom Thank you for being that support for those poor families. Not only NOT getting the life-saving care they needed, but also actively being attacked for seeking appropriate care for a common, debilitating condition.

[shelley-lee waller @shellchat]

@useless_priest We surveyed our cohort of parents/carers of young ppl w ME/CFS abt 5years ago & most had, at some point, been suspected of/questioned about Munchausen by proxy - a vanishingly rare condition. Some members had court proceedings initiated (successfully defended). Neuromum spot on!

[Andrew L Callen MD @AndrewCallenMD]

Now online in @TheAJNR :

In patients with suspected #spinalCSFleak but negative myelography, higher spinal compliance was associated with clinical benefit after subsequent empiric blood patching.

Not a decision rule, but an interesting physiologic signal in a tough subgroup.

https://t.co/KueEoWECGW

[Dr Terry Simpson @drterrysimpson]

The public thinks preparedness is waste, because success looks like inactivity. The fire truck polished in the station house is called civilization. The missile buried in a Midwestern silo is called deterrence. Yet a WHO lab sitting quiet, a CDC epidemiologist waiting for an outbreak, or stockpiled PPE, suddenly is “bureaucratic excess.”

That is the idiocy of modern politics: we praise insurance in war, fire, and finance — but mock it in public health because the catastrophe did not happen this week.

Pandemics are not prevented by improvisation. They are prevented by long stretches of expensive boredom interrupted by moments of terror.

Cutting basic science and cutting preparedness means we will try to offload our problem on Kenya and volunteers at airports. That isn't a strategy, that is a bandaid for a gunshot wound

[shelley-lee waller @shellchat]

@NeleHelena @TraceyABurgess Yeah, seems to sprung from the idea that we don’t know how to ‘do pain properly’. I also often get Physios say, oh but if u keep moving, yr pain will subside. After lifetime of pain, I know what pain can be pushed through vs pain that stops me functioning for days afterwards!!

[shelley-lee waller @shellchat]

I’ve got a lot of respect for this puppa, saying I just ain’t going to play this stupid game!

[Just Dave now @justdavenow89]

This dog is like fuck you I wont play by your rules

[shelley-lee waller @shellchat]

@Z3R0Gravitas Stunner!

[shelley-lee waller @shellchat]

@tessfalor This is so unusual. I used Garmin body battery for nearly 10yrs for POTS management. It only ever showed stress like this when something truly impactful was going on, eg. my first suspected CFS leak which floored me + sent HR through roof.

[shelley-lee waller @shellchat]

@sunsopeningband @minadjenkins Thanks Todd. We were v green when son did CPET. We didn’t even have name for what he was experiencing as PEM nor what triggered it. We believe his long recovery from CPET (6wks) was bc he had flu vax that week. Assume yr considering multiple hits or immune challenge in research?

[shelley-lee waller @shellchat]

Exactly. What. She. Said. Just had another round of dismissal bc “bloods were normal” while my AxialSpondyloarthritis wreaked havoc on vertebrae, SIJ + joints. They cldnt “see” the bone marrow oedema until after the irreversible damage. And that’s w a prior AxSpa diagnosis! 🤯

[Neurologist Mom @NeurologistMom]

https://t.co/NgrmOFunPe

[Denis - The COVID info guy - @BigBadDenis]

🧵(1/3) NSW respiratory surveillance reports: 21 May 2026

Week ending 16 May 2026:

🔸COVID positivity rate: 4.1% (+0.1%)

🔸Number of laboratories reporting COVID: 3 out of 4

🔹COVID: 1,092 (+20.4%)
🔹Influenza: 435 (+28.7%)
🔹RSV: 1,815 (+15.0%)

https://t.co/1apogQpqtQ

[shelley-lee waller @shellchat]

If you’ve ever wondered about CFS leak, listen to this. Debunking the myths, clarifying the ambiguity and going through the tx approaches. Just brilliant! 👇

[Andrew L Callen MD @AndrewCallenMD]

I joined Bendy Bodies to talk about CSF leaks, which are both underrecognized and over-simplified.

We covered the leaks, the mimics, the myths, and why “low pressure” is often the wrong starting point.

Great conversation with @BluesteinLinda

https://t.co/NIVJGsm72H