Severe ME patient is being starved by an NHS hospital in London

An NHS hospital in South London is starving a young Black woman living with severe myalgic encephalomyelitis (ME).

The week before Christmas, Queen Elizabeth Hospital (QEH) took the sudden decision to withdraw a vital antihistamine medication without warning or consent. Since then, severe ME patient Savannah Yulia Victora-May has been largely unable to tolerate food and other medications.

Now, she could be very genuinely days away from the hospital killing her. Since the Canary started writing this article on Monday, her medical team have stopped her subcutaneous pain injections AND enormously alarmingly, her intravenous fluids. Notably, on the morning 22 January, the Canary’s intermediary alerted us to this abrupt decision by the hospital to stop her fluids – which it did without informing Savannah quite literally overnight.

Savannah has said she is already “struggling” to breathe from dehydration and in significant pain. She has expressed that the effects of stopping her fluids has made it so she “can’t feel” her fingers. This can be a warning sign of severe dehydration.

Her continued dire treatment at the hands of QEH has haunting similarities to the catastrophic care that led to the death of 27-year-old Maeve Boothby-O’Neill.

After eleven months of abusive medical staff neglecting her care and with her condition worsening, she is appealing to the wider community to intervene. She’s calling on as many people as possible to petition the hospital to immediately engage with expert guidance on severe ME patient care in order to halt her rapid deterioration.

Severe ME patient Savannah: another case of catastrophic NHS care

Savannah Yulia Victora-May developed ME after a bout of flu as a teenager in 2017. She has now lived with severe ME for several years.

Since March 2025, she has been an inpatient at Queen Elizabeth Hospital, in Woolwich, London. However, throughout her stay, the clinical staff have subjected her to a litany of dangerous and abusive care decisions.

Doctors have denied her ME-appropriate and essential medical treatment on multiple occasions. This has included the shocking failure to regularly clean her Peripherally Inserted Central Catheter (PICC) line for weeks, resulting in blockage, and putting her at risk of infection.

This grossly inadequate and abusive care stepped up in December. Medical staff ignored her serious light sensitivity (photophobia) – a classic symptom in severe ME patients.

Highlighting her appalling treatment in an email to ME expert Dr William Weir, Savannah wrote how:

On the morning of [data 19th Dec 2025], I was woken by approximately four to six members of staff who entered my room. I was recorded on body cameras. Without prior warning, explanation, or consent, they physically tore my blackout tent and photophobia shield out of my hands while I was holding onto it.

Savannah said how this was “overwhelming, frightening, and physically aggressive”. She felt this was a “violation” or her body and safety and that:

Since that moment, I have been unable to tolerate the light in my room. The pain is immediate and severe.

Staff also informed her that they would stop all medications she was taking via tube unless she agreed to take them cold. This is despite her visceral hypersensitivity (which causes severe pain unless medications are warmed) causing extreme and unnecessary suffering. Hospital staff told her:

If you really need it, you’ll take it.

Alongside this, the hospital unilaterally decided to withdraw the vital antihistamine medication – Cyclizine – which has enabled Savannah to tolerate nutrition and medication. The result has been a devastating decline.

Her medical team is has now stopped the injections that help reduce Savannah’s pain symptoms.

A ‘state of medical starvation’

In an email to her primary doctor on 13 January, Savannah (with the aid of AI) wrote:

Since 4 January, I have eaten five times in total. These were not full meals and were repeatedly interrupted by retching, heaving, and emesis until intake became impossible. This starvation is not by choice. It has occurred directly as a result of the hospital removing Cyclizine, a medication that is medically necessary for me to tolerate food, fluids, and other essential medications.

Since Cyclizine was reduced and then removed entirely, I have developed uncontrolled nausea, extreme visceral pain, persistent vomiting, and an inability to tolerate oral intake, NJ tube use, or medications. I am now in a state of medical starvation.

My current condition includes:

• Confirmed malnutrition on blood tests
• Sustained tachycardia for weeks, with heart rates up to 138 bpm at rest
• Persistent vomiting, including during sleep
• Severe weakness, confusion, and functional decline
• Severely reduced urine output, dehydration, and minimal bowel activity
• Thirteen kilogram weight loss since admission
• Inability to reliably tolerate oral or enteral medications

The medication prescribed to replace Cyclizine has failed. Any medication administration triggers immediate visceral spasms, severe nausea, and vomiting, rendering oral medications unreliable. There is currently no effective backup plan in place to control symptoms, prevent starvation, or halt this decline.

Alarmingly, she highlighted how this is leading to her “daily deterioration”, with carers describing it as “excruciating to witness”. Notably, she wrote how she is:

progressively thinner, weaker, flatter, and more cognitively impaired. They have raised a basic and unavoidable question: if a patient is not being given food, water, or tolerable medication, and dies as a result, who is responsible?

Misogyny and racism at the heart of it

What’s more, Savannah has raised how misogynoir has played a part in the way medical staff have psychologised her condition and self-advocacy.

Specifically, she has underscored how staff have treated her medically necessary Cyclizine and other vital supports as addiction and dependency. In one instance for example, she detailed to Dr Weir how she had:

been told that my medications are not necessary and that I need to learn to cope with the light.

More recently, her doctor has decided to remove both her NJ feeding tube and oxygen support. She wrote to a friend advocating for her that:

[They’re] Saying I should be encouraged to try breathe without oxygen

In her email to her doctor, Savannah laid out how racism and misogyny is at the heart of these repeated attempts to frame her medical needs and condition as psychosomatic:

I am also formally documenting concern regarding bias in clinical decision making. There is extensive evidence that women, particularly Black women, are more likely to have pain minimised and necessary medication reframed as “dependency.” In my case, implications of addiction have been raised despite the absence of diagnostic criteria and despite objective markers of physiological collapse. If unaddressed, this raises serious questions about liability, including discriminatory contribution to preventable harm.

Scandals and inquiries have routinely exposed the structural medical misogyny and racism within the NHS. And where ME is concerned, it regularly culminates in medical teams gaslighting, psychologising, and minimising patients’ biophysiological condition – as it has for Savannah.

As Savannah pointed out, research has shone a particular spotlight on how pervasive these compounding barriers are in ME diagnosis and care. Of course, the research only underlines what people of colour like Savannah have long known and experienced firsthand.

Ignoring severe ME experts and guidance

Unsurprisingly, despite raising all this with her doctor – he has continued to refuse to restore her Cyclizine. Lack of support has left Savannah, in her severe and deteriorating state, fighting the system for safe and appropriate care.

Since 21 December, activist and severe ME representative Sam Pearce from the World ME Alliance (WMEA) has been providing Savannah’s doctor with key reference material from the organisation’s Medical Education Hub. These contain crucial information on correct clinical care for severe ME patients. She has raised the very real dangers that “abrupt cessation or initiation of medications” can pose. What’s more, she has highlighted how:

In recent years, there have been a number of patients with Very Severe ME who have died when appropriate care was not provided in medical facilities. Too often, this is due to the psychologising of a biologically based energy-limiting complex neuroimmune disease. In many cases, medical misogyny has led to falsely attributing mental health problems to young women with ME.

Savannah’s doctor responded only to redirect Sam to the Patient Advice and Liaison Service (PALS). However, PALS has so far ignored Sam’s appeals for assistance, alongside 50 prior emails Savannah has sent.

ME organisations passing the buck

Alongside this, Sam (who lives in South Africa) has been seeking advocacy support for Savannah on the ground. But so far, UK organisations have also been passing the buck.

When Sam approached Action for ME (AfME), the staff member she corresponded with told her that Savannah didn’t meet the criteria for its advocacy service. In particular, they said that this was because it:

only accept cases where the barrier to accessing services is a lack of understanding of ME.

They laid out that they felt the barrier instead:

is the fact that Savannah is so severely affected.

Of course, ignorance – in other words, ‘lack of understanding’, and arguably, medical arrogance around her ME is precisely the problem. So once again, an ME organisation with millions of pounds in funding is refusing to intervene in an urgent severe ME case, claiming it lacks the “resources” to take action. But ultimately this begs the question why it’s not directing its budget towards helping severe ME patients more. This is particularly galling when cases like Savannah’s are not remotely uncommon – as previous Canary reporting on the issue has roundly demonstrated.

AfME referred Sam to the 25% ME Group specifically formed to represent the quarter of the ME population with Severe ME. It also declined to get involved because it said that it does not:

provide advocacy around medical matters.

Speaking to the Canary, Sam said of their responses:

If the criteria of ME organisations do not allow them to intervene in an urgent case when someone with the most severe form of the disease is at risk of dangerous decline and possible death due to medical negligence, we suggest they change their criteria. QEH is demonstrating a lack of understanding which borders on deliberate cruelty.

Dismissing patients as the experts in their own conditions

As ever, doctors and medical staff are dismissing a patient’s lived reality. They’re denying Savannah as the expert in her own condition. Instead, her medical team have accused her of being a non-cooperative patient. Notably, this is because she has been refusing to engage with the dangerous care plan they claim will stabilise her condition. This has been against all Savannah has told them on severe ME.

What’s more, it’s also despite the fact the care plan runs counter to the updated National Institute for Health and Care Excellence (NICE) guide for ME. Obviously, this is guidance that NHS staff should follow – but are still failing to across the board.

What Savannah’s experience has once again underscored is how broken the system remains for severe ME patients.

To make matters worse, the hospital has been pushing to discharge her with no support in place. But in doing so, they would make Savannah homeless – as she has nowhere safe to go.

Savannah now feels the safest option is for her transfer out into a hospice. There, she hopes palliative-trained staff will be better equipped to stabilise her complex symptoms. The hospital has forced Savannah, in her extremely ill state, to initiate enquiries. She has identified a local hospice that is willing to approve her for admission. But she needs a referral from QEH to make this happen.

To date however, the hospital has failed to take any steps towards arranging this.

How you can help a severe ME patient

As a result, Savannah needs the wider community to step up. She’s calling on anyone with the capacity to email and put pressure on the hospital.

Savannah is asking for anyone who can to email the chief medical director at the hospital. The Canary has drafted a template email, which can be sent as is, or adapted, as follows:

Dear Mr Travis,

I’m writing to you with concern for a patient who is rapidly deteriorating in your care at Queen Elizabeth Hospital.

Severe myalgic encephalomyelitis (ME) patient Savannah Victora-May has been an inpatient with you since March 2025.

After eleven months her condition has only continued to worsen, she now needs to transfer to an a safer environment.

Unfortunately, there have been multiple cases like Savannah’s where hospitals without knowledge of how to treat severe ME patients, have caused significant and sometimes life-threatening declines. This was the case with 27-year-old severe ME patient Maeve Boothby O’Neill – who tragically died in 2021 as a direct result of inadequate care by Royal Devon and Exeter Hospital.

Firstly, we ask that you urgently restore her intravenous fluids. If you do not take immediate action on this, Savannah will be at real risk of death.

Savannah wishes to move to a hospice where palliative-trained staff will be equipped to stabilise her. Given this, I am writing to urge Queen Elizabeth Hospital to take steps to arrange her safe and urgent transfer into a hospice before her condition declines any further.

We also urge the hospital to engage with advice from ME experts and read the up-to-date internationally-recognised guidance medical guidance on safe care for people with Severe ME that has been shared with her doctor, and train staff accordingly. Members of Savannah’s multi-disciplinary team have a duty to engage with this information.

Most importantly, please acknowledge that as the patient, Savannah is the expert in her own condition. And therefore, I ask that your staff respect her agency to refuse treatments where she knows they will cause her to deteriorate further and actively listen to her when she communicates the care she needs.

Yours sincerely,

You can send this to the Lewisham and Greenwich NHS Trust Chief Executive Ben Travis at the following email: [email protected]

In a distressed message on the morning of 22 January, Savannah told Sam:

I can’t sleep or rest from no fluids. I feel like I’m being pulled through hell.

Of course, it’s an absolutely disgraceful situation that a severe ME patient is once again reliant on the wider community to advocate for her rights. The perfect storm of ME illiterate and arrogant clinical staff, medical misogyny, systemic racism, and no NHS pathway or ME organisations to safeguard the most vulnerable severe ME patients, is putting the life of another young woman unacceptably at risk.

Feature image via the Canary