Our friend, Savannah, a severe ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) patient, has been under the care of Queen Elizabeth Hospital, Lewisham and Greenwich NHS Trust, for the past 6 months. Despite repeated pleas and her deteriorating condition, Savannah is being denied essential medical treatment, without which she fears she will not survive.

What is happening:

1. PICC Line Failure & Dehydration (updated 21/07): Savannah's PICC line, providing 90% of her fluid intake, was blocked and infected. This is a direct result of neglect, with cleaning protocols ignored for weeks. She hadn't received PICC fluids from Thursday 17th until Monday 21st July, and was only getting around 500ml of fluid daily instead of the 2 litres needed. 
2. Unacceptable Pain Management: For months, Savannah endured 'unmanaged, screaming, unliveable pain,' often causing paralysis. She has been refused effective oxycodone injections for three months, despite them being the only treatment to significantly alleviate her suffering and restore movement to a paralysed arm. Now, she must have six injections daily, waking every four hours, day and night. This constant disruption is catastrophic for severe ME/CFS, leading to extreme weakness and difficulty breathing.
3. Refusal of Essential Treatment: Despite the clear success of injections, Savannah has been refused a vital syringe driver, which would provide continuous pain relief and allow uninterrupted sleep – essential for ME/CFS respite. Their refusal is based on a false belief that 'no physical intervention' could help. Alarmingly, Savannah has been discharged from pain team input and advised to attend a hospital in Liverpool for FND (Functional Neurological Disorder) – a misdiagnosis that could severely worsen her condition, as FND treatments are highly detrimental for ME/CFS patients and are out of step with NICE guidelines for ME/CFS.

We are gravely concerned that Savannah's situation is a horrifying repeat of past ME/CFS tragedies in the UK. We sadly recall the death of Mauve Boothby-O'Neill in 2021, where inquest findings highlighted critical failures in ME/CFS care, particularly regarding hydration and nutrition. Similarly, Millie McAinsh last year faced a devastating trajectory in hospital until public pressure helped secure the life-saving care she needed. 

We fear that without immediate intervention, Savannah will become another avoidable tragedy due to a dangerous misunderstanding of severe ME/CFS.

We seek immediate intervention to ensure:

1. Immediate implementation of essential PICC line cleaning schedule
2. Urgent implementation of a syringe driver to provide continuous pain relief and allow essential, uninterrupted sleep.
3. A comprehensive and appropriate care plan that acknowledges and correctly addresses her severe ME/CFS, aligned with established clinical guidelines.