#pwME yet another young woman in a NHS Hospital Trust on the brink of starvation due to #VerySevereME. Trust has no idea what they are seeing, no guidance, no experts, no provision, no direct access to lessons learnt by Royal Devon NHS. Psychiatrists have been called in. 1/2

I just remembered that yesterday was my ten year anniversary of withdrawing from the role at Port Lockroy in Antarctica. Not the happiest of anniversaries. :(

It's #WorldPatientSafetyDay tomorrow, 17 September. Safe #CareForKaren isn't too much to ask for, is it? To #SaveCarlasLife, and for all the other people with #SevereME? If you can, please email the Patient Safety Commissioner - contact details in her bio. She needs to know what's going on!

The #ShakeItUP petition (live since Nov 2021) is closing today. The wider campaign will remain live. I am evaluating all current campaigns and will be 'resetting' them and 'tweaking' as appropriate. Since 2nd Nov 2021, 9211 people have signed the petition - thank you. 1/2

Important 🧵 on #WorldPatientSafetyDay for Patient Safety Commissioner to please read/help with urgent actions Speak with Michael Gordon Pierre Naoum Fathers of daughters experiencing NHS care #MyalgicEncephalomyelitis #LongCovid - with #PESE #PEM Post Exertional Symptom Exacerabation/Malaise

Patient Safety Commissioner There needs to be a 'yellow card' equivalent for non-pharmaceutical 'treatments'. The lack of one is causing a huge data gap and uninformed policy decisions. #WorldPatientSafetyDay #MEcfs

The Equality act says disabled people should by law be treated equally The Labour Party Why are disabled People not being included directly via involvement in decision making government policy ? #Coproduction #Equality #Inclusion #DisabledPeopleDemand legislation.gov.uk/ukpga/2010/15/…

It’s #WorldPatientSafetyDay2024 New #PatientSafety NICE guidance for #MyalgicEncephalomyelitis was adopted & endorsed for use in NI Jan 2022 Now confirmed there’s no £250,000 needed to implement NICE ie 7500 patients @ 64p pp per week Mike Nesbitt

Urgent Call for the creation of an NHS protocol for Severe M.E. Seems appropriate to share this again on #WorldPatientSafetyDay. Hospitals are currently not safe spaces for this patient group. organise.network/actions/petiti… #pwME #MEcfs

📣 The The Labour Party Government has promised to ensure patient safety. Some p/w #LongCovid are also being diagnosed with #ME. Urgent action from Department of Health and Social Care is needed to ensure safe care for #pwME. ‼️Doing nothing is not safe‼️ #ThereForME #WorldPatientSafetyDay Wes Streeting MP

6️⃣ Family carers desperately want and need support from the NHS - but healthcare workers don’t have the right tools to offer safe and meaningful care. #ThereForME #WorldPatientSafetyDay

The effort of trying to get adjustments for medical appts has worsened my condition. No NHS dept I’ve spoken to understands the unique ways #MECFS is disabling. This MUST change. #ThereForME #WorldPatientSafetyDay Wes Streeting MP @dhscgovUK @gwynneMP @laylamoran Patient Safety Commissioner

I would add that many of the most severe ME patients are receiving NO care, medical outliers languishing in the dark in their beds and, without appropriate & accessible medical support, slowly worsening to the point of zero function Wes Streeting MP Department of Health and Social Care #ThereForME

My daughter Isla died in May, she had Severe ME. She was left to rot and die at home with no support from the NHS. She only received one home visit from her GP in her years of illness. Things have to change. #ThereForME #pwME #wesstreeting #severeME

#ThereForME #WorldPatientSafetyDay Wes Streeting MP Department of Health and Social Care Yesterday I was in hospital for a procedure & nurses didn’t know what ME was! Although they tried to accommodate my reactions to bright light, I heard a nurse ridicule me! Curtains aren’t brick walls! #ChangeNow

On this #WorldPatientSafetyDay, let's start making healthcare environments safe for those living with Myalgic Encephalomyelitis. Watch - buff.ly/3UYLxan NHS Protocol for Severe M.E. Please sign the open letter -buff.ly/3SZX3Bs #PwME #MEcfs

ME is not rare. Knowledge is. There is an urgent need for recognition, education, pathways & services, research and treatment. Supportive care makes a difference. People with #ME deserve better care. Many are without care. Incidence increasing - we need to be #ThereForME now.

🌻Regular Weekly votes needed please! Same day as #MEAwarenessHour🌻 PLEASE VOTE for @invest_in_me (Invest in ME Research) 🇪🇺 to share in grant monies from My Giving Circle - closes 30/9 #12 on this round for UK/🇮🇪 #MyalgicEncephalomyelitis mygivingcircle.org/invest-in-me-r… ExtraVotes? MEResearchUK 25% ME Grp

#MEAwarenessHour #pwME Please help ME Foggy Dog with their request

#MEAwarenessHour #Inclusivity for all - remember those disabled by Energy Limiting Conditions #MyalgicEncephalomyelitis #LongCovid