"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!!!
