New petition UK Save Savannah Victora-May - Prevent Another ME/CFS Tragedy

Beth said:
New petition I saw on twitter, asking for signs and shares, figured not everyone is on twitter or regularly so thought I'd share on here, I don't know anymore about the situation except whats written on the petition, hope I'm posting this correctly
chng.it

Save Savannah Victora-May - Prevent Another ME/CFS Tragedy

Can you spare a minute to help this campaign?
chng.it chng.it
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It is essential this is taken up by Forward ME and the charities....?
 
22 Jul 2025
Savannah's PICC line was finally unblocked in the early hours of Monday morning (21st July) after a member of our ME group called to check.

"It's now working. Fluids running. My body is crumbled from no fluids from Thu-Sunday night".

This is great news and also highlights the importance of advocacy, so please keep sharing this petition with as many people as possible - every single signature matters.

Thank you

Darren
 
Original post by petition starter :

Forget how twitter/X works so not sure if you can see comments underneath, Zachary grin managing a new low :

Anyway word is being spread, hopefully they will post more info/updates in time, low on signatures though compared to views & shares unfortunately, fingers crossed matters are resolved quickly
 
I would sign this petition, especially as so few have.

"But, and it's a big but", Baroness Julia Cumberlege wrote in her review, titled 'First Do No Harm', the options it's giving for more Change.org marketing means I unable to consent.

However, I fully support Savannah and her family and friends. Perhaps the old FND specialist there should check the pain aspect of the DecodeME pre-print results which, of course, were not out on 23 July 2025.

ETA: quotation marks
 
Does anyone have an update on how Savannah is doing, please? I think about her often, but we seem to have heard nothing further since last July.

I wish there was some way of keeping track of such hospitalised ME patients so that they are not quietly "lost" in the NHS system.

Obviously, a patient's privacy is paramount and, even if there is a necessity for the wider world to be made aware of their case at some point, they have every right to withdraw from publicity at any time. However, those of us concerned for their welfare are often left hoping for the best, that the issues have been addressed, and praying that any negligent medical care that has been highlighted is not continuing out of sight and unrecorded.
 
Last updates I could find are by Sarah boothby on bluesky, from about 3 or 4 months ago, seems things were/are going well with the hospital,last post was she’s no longer advocating for her by mutual agreement and asking for privacy, fingers crossed she’s at least stable, the petition is doing new rounds on twitter though so possibly still wanting/needing more signatures?
Happy new year everyone ( not meant to be to sarcastic but in my head it always feels like that when saying it to other sufferers)


 
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Beth said:
Last updates I could find are by Sarah boothby on bluesky, from about 3 or 4 months ago, seems things were/are going well with the hospital,last post was she’s no longer advocating for her by mutual agreement and asking for privacy, fingers crossed she’s at least stable, the petition is doing new rounds on twitter though so possibly still wanting/needing more signatures?
Happy new year everyone ( not meant to be to sarcastic but in my head it always feels like that when saying it to other sufferers)
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Thanks for the update @Beth
 
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