Jungle Princess

Full time Mum with m.e cfs Part time Artist, Ex Dj, wannabe Political activist/Comedian!Member of the Junglist Massive!

[Jungle Princess @PrimaDonnaGal]

@arixanxim I am here. I am one of those people. Illness was the end of dance for me. This film reminds me of that fact #me #cfs #unbound #bound

[Bert @Bert_with_ME]

The defenders of this will point to similar artistic expressions coming from other patient communities - just Google "cancer interpretive dance" to see plenty of examples. If other disease communities do stuff like this, why not ME/CFS?

But ME/CFS is not like other diseases. ME/CFS patients have been fighting for over 40 years to convince the world of the simple fact that they are actually sick. For decades the public at large mocked these patients with labels like "yuppie flu" and "raggedy Ann syndrome." Even the medical and government institutions tasked with the protection of the health of the American public belittled these patients behind their backs (eventually made public by the great investigational work by Hillary Johnson in her book, Osler's Web - https://t.co/ybr663MTJF).

The consequences of this stigma extended far beyond humiliation. The vast majority of doctors would proclaim ME/CFS symptoms as psychosomatic and refuse to treat them. Disability insurers would reject their claims on the same basis as many plans explicitly exclude psychosomatic/mental illnesses or limit them to 2-year benefit limits. The CDC would drag its feet for years before establishing a proper surveillance program to estimate ME/CFS prevalence in the U.S., and the NIH would throw crumbs at the feet of researchers pleading for funding to better understand this disease.

All this to say, if you are a researcher, advocate, journalist, etc. speaking about ME/CFS, you are being held to a different standard, one that accounts for decades of abuse and stigmatization. Your messaging needs to be tighter than that of other disease advocacy programs, because this disease still has people waiting on the other side to say "Look! They're outside and dancing! How sick could they be!?"

I don't dare speak for the whole community and certainly respect every patient's personal expression and coping strategies, but it's hard to see SolveME promoting this stuff with how bleak the broader situation often seems. I personally yearn for sober, constructive professionalism to cut through petty infighting, brain retraining nonsense, and pervasive grifting that continues to plague this community in 2026. I hoped that that level of seriousness would come from the largest and oldest ME/CFS patient advocacy organization in existence.

[Jungle Princess @PrimaDonnaGal]

@AlbaDocherty I have brain altercations after covid. Had brain scan when I “just” had m.e for 30 yrs pre long covid (2 diff strains in 13 weeks) after getting much more severe, a brain scan showed I have small vessel disease. I am 49, they said I have the brain of a 70 yr old. Not reversible

[Jungle Princess @PrimaDonnaGal]

Brown University shooter suspect video released. Looks like he leans forward as you can see the back of his neck & he puts something from his right into his pocket. Prayers for families & victims #BrownUniversity #suspect #Brown #university

[Jungle Princess @PrimaDonnaGal]

Louisville airport place crash in real time via flight radar. Got to 174ft then decline
#Louisville #kentucky #planecrash #plane #ups

[Studio MDHR @StudioMDHR]

A joyful jumble of jazz could be YOURS!!

We got our hands on 8 copies of the rare, ultra-premium Cuphead 4xLP vinyl thanks to our pals at @iam8bit.

For a chance at one, follow @StudioMDHR, Repost, and reply with your favourite Cuphead tune and the hashtag #CupheadTurns8!

[Jungle Princess @PrimaDonnaGal]

@CartlandDavid It was a strong vaccine. I got Upto 40,000mg of vitamin c (ascorbic acid) every hour to bowel tolerance which shows viral load plus strong antioxidants to help fight the symptoms of the jab. However got Upto 70,000mg with covid before bowel tolerance

[Jungle Princess @PrimaDonnaGal]

San Diego plane crash in real time via flight tracker. You can see vertical rate drop erratically. Hope everyone is safe & thoughts with the families #SanDiego #planecrash #murphycanyon #flighttracker #plane

[Jungle Princess @PrimaDonnaGal]

Flight path in real time of upturned delta plane N932XJ crash landing in Toronto. Direction figures on left. Via Adsb flight tracker 19:09pm Uk time #toronto #crash #plane #planecrash #upsidedownplane

[Jungle Princess @PrimaDonnaGal]

This is the flight path of Philadelphia plane crash via military tracker. Vertical drop rate in real time. It crashed within 1 minute of take off.
#planecrash #Philadelphia #plane #philadelphiacrash #learjet #crashlanding

[Jungle Princess @PrimaDonnaGal]

@loscharlos Jan 2020 T cells cd4 & cd8 https://t.co/YMcFN8Oj5d

[Jungle Princess @PrimaDonnaGal]

Donald got shot 😳 #assasination #Trump #Donald #shooter #shot

[Jungle Princess @PrimaDonnaGal]

13 unlucky for some 😆#MyXAnniversary

[Heidi @HeidiBriones]

If you're a night owl, like 30% of people, then you have a disability in the modern world.

"When a night owl is forced to wake up too early their prefrontal cortex remains in a disabled off-line state, like a cold engine after an early morning start. An adult’s owlness or larkness, also known as their chronotype, is strongly determined by genetics. If you are a night owl, it’s likely that one (or both) of your parents is a night owl. Sadly, society treats night owls rather unfairly on two counts. First is the label of being lazy, based on a night owl’s wont to wake up later in the day, due to the fact that they did not fall asleep until the early-morning hours. Others (usually morning larks) will chastise night owls on the erroneous assumption that such preferences are a choice, and if they were not so slovenly, they could easily wake up early. However, night owls are not owls by choice. They are bound to a delayed schedule by unavoidable DNA hardwiring. It is not their conscious fault, but rather their genetic fate." - Matthew Walker, PhD from 𝘞𝘩𝘺 𝘞𝘦 𝘚𝘭𝘦𝘦𝘱

Night owl lives matter. 🦉

[Open Medicine Foundation @OpenMedF]

Exclusive Interview with Ron Davis & @JanetDafoe!

Today, Ron Davis, Ph.D., sits down to discuss his most recent publication: “Catalytic Antibodies May Contribute to Demyelination in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome.”

Watch now 👉 https://t.co/cAWjxd2Pk7.

[The Corsi-Rosenthal Foundation UK @CRFoundationUK]

It's official NHS advice to go to school with mild COVID-19.

There's an obvious problem with this:-

A mildly symptomatic person could infect others who suffer severely. Or who develop LongCovid.

This would then cause their absence.

https://t.co/tw1vu7JWXo

[It's M.E. Linda 💙 😷 @HappyHoundHouse]

🌻🌻 Share Like RT posts during #MEAwarenessHour in 12 hours time🌻🌻

20:00 GMT 21:00 Europe

Talking all things #MyalgicEncephalomyelitis

Poster credit: @AertbyLisa 🙏

[Bateman Horne Center @BatemanHorne]

PEM is unique to #MECFS and has not been documented in ANY other illness, absent even in those suffering post-chemotherapy complications. Access the full series here: https://t.co/NA5P0gUSub

@OpenMedF @LBatemanMD
#PEM #PESE #LongCOVID #MedEdMatters #medicaleducation #MERC

[Adam @ABrokenBattery]

New Video: Very Severe #MECFS is a debilitating condition causing profound suffering and life threatening symptoms. They are bedridden and dependent on care. Most doctors have had no training; leading to misdiagnosis, Inappropriate management and medical neglect.

[Meaghan Kall has moved to Bluesky @kallmemeg]

Read this if you want a tweet to ruin your day