Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital

There's an update on Savannah's gfm. TW so much medical abuse.

Please keep sharing and donating!

By trying to find somewhere less unsafe, she has now lost her NHS provided carers. She's too unwell to do without, so needs to self fund them.

Thank you 🙏🏻

#SaveSavannah #SevereMErgency #ME/CFS

#SaveSavannah #SevereMErgency

#pwME please repost and boost the below. Nobody is willing to intervene. The health minister must step in and prevent a tragedy

Update: UK ME/CFS Biobank Steering Group - The ME Association The ME Association (MEA) has invested £1.095m in the UK […]

Would've been nice if our orgs wouldn't just do business as usual during a #SevereMErgency.

Exactly one mention of "severe" in a sub sub bullet while one of us hasn't eaten in 9 weeks under NHS care.

Where's the urgency? Lives are *literally* on the line. Govt yet to acknowledge #SaveSavannah

#pwME URGENT - looking for someone ME literate who can sit with Savannah in hospital in London from 4:30pm TODAY for a few hours. Travel will be reimbursed.

Please share widely

#SaveSavannah #SevereMErgency

@tomkindlon.bsky.social @abrokenbattery.bsky.social @drelke.bsky.social

"Thank you for your ongoing support for Savannah. Today again we are calling on the community for help. In the absence of any national database of safe doctors for pwSevereME, we want to hear from you if you could make any hospital recommendations for the (Very) Severe, ideally with a bed Savannah could be transferred to. Primarily in the UK but since we're not sure if this even exists here, we're also open to recommendations in nearby countries. For instance, a German hospital gave Dutch pwVerySevereME Sanne TPN and we will be reaching out to her team. Open to suggestions for NHS and private doctors alike. If you know of anywhere, please fill in this very short form: https://tally.so/r/81KxGO. QR code with the link attached too. We have thought long and hard about this, as there is a huge inherent risk in such a move for even further deterioration, but Savannah feels we have to consider all options to get her out of QEH before they kill her. To be clear: we are not asking for “miracle” doctors, ones with wild “cures” or alternative treatments. We're simply asking for doctors who acknowledge the physical causes of ME and won't try to psychologise her. We know what medication keeps Savannah alive. We just need to find a safe bed with a safe consultant who will reinstate those meds (both her IV Cyclizine and pain relief), and provide a stimulus-free environment for her to recover enough to have TPN installed."

#SaveSavannah #MECFS #SevereMErgency

Calling on all #pwSevereME and allies

Savannah's team have just posted this on the fundraiser.
If you know of anywhere, please add to the web form here: tally.so/r/81KxGO

The insanity of considering to fly a very ill person abroad due to inaction of UK Govt!!!

@ashleydaltonmp.bsky.social any progress please?
Savannah is DYING and needs urgent intervention to stop the hospital from killing her.

#MECFS #SevereME #SaveSavannah #SevereMErgency

Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital

#SevereMErgency #SaveSavannah #MECFS

New update posted on Savannah's fundraiser. TW Severe medical abuse, go carefully.

QEH reduced her pain relief even further now. While completely ignoring sensory issues, keep barging in on her. Unannounced capacity assessment... How is she supposed to recover?

Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital

Please keep sharing her fundraiser if she is to stand any chance of surviving this abuse.

www.gofundme.com/f/severemerg...

#MECFS #SevereME #SevereMErgency

Thank you Tessa! Please keep the pressure up on the health minister.

If QEH are allowed to continue as they are, we will have another "never event" soon. They must be forced to restore the meds that allow her to take on nutrition and deal with pain.

#MECFS #SevereMErgency

Chronic Fatigue Syndrome / Myalgic Encephalomyelitis For research, treatments, and personal stories regarding Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis (ME). ME/CFS is a multi-systemic neurological disease, distinct from chronic fatigue ...

Please use this template to advocate for Savannah, a #SevereME patient in grave danger, being mistreated in Queen Elizabeth hospital Lewisham! #SevereMErgency #pwME #MECFS scroll to bottom for short email for low energy www.reddit.com/r/cfs/s/sVmw... pls share #saveME #CanYouSeeMEnow

afaik the NICE guideline referred to in Hannah Sharland's article is this one: NG193
nice.org.uk/guidance/ng1...

This review in Pain Reports (2021) called it "pernicious":
pmc.ncbi.nlm.nih.gov/articles/PMC...

#SevereMErgency