Severe ME patient is still starving in NHS hospital

A week after the Canary first reported on the abysmal care of 23-year-old severe myalgic encephalomyelitis (ME) patient Savannah Victora-May, and Queen Elizabeth Hospital’s (QEH) continued intransigence is putting her life at risk.

Far from stabilising her condition, Savannah, under their care, is enduring a slow and excruciating death via dehydration and malnutrition.

Now, it turns out that a clinician with a history of psychologising ME could be behind this.

Severe ME patient Savannah: still being starved by an NHS hospital

On Friday, urgent appeals by Savannah’s advocates forced the hospital to restore fluids. That day, Savannah attempted to demonstrate ‘compliance’ by drinking 60mls. The effort caused her to pass out from pain:

like my stomach is ripping from the inside.

However, over the weekend, Savannah was still experiencing dehydration leaving her “gasping for air”.

She learned on Monday that her clinical team had rewarded her attempt by giving her just 10ml of fluids every hour.

Leading ME expert Dr Weir had already advised that Savannah needs a minimum of 3L fluids per day to counteract her low blood volume. After tireless pressure from Weir and Sam Pearce, author of World ME Alliance (WMEA) resources on severe ME, her doctor finally agreed to administer 3L on Monday afternoon.

Nevertheless, Savannah is still facing significant risk. On Monday 26 January, Savannah said:

Today is a victory as I have fluids back but I am in extreme danger, extreme. I still have no nutrition at all. They’re saying they want to remove my IV access through my PICC line. My subcutaneous painkillers are still due to be reduced further.

Savannah’s last meal was 5 chips, 12 days ago. Since the hospital withdrew her anti-nausea medication, eating orally causes unbearable pain and post-exertional malaise (PEM). For the last 7 years, Savannah has relied on an NJ tube for nutrition. Yet, QEH continues to dismiss Dr Weir’s call to provide her with total parenteral nutrition (TPN).

The hospital has also halved her pain injections. Currently, it is giving her paracetamol every 6 hours through an intravenous drip. Now her medical team have started giving her a patch that’s a quarter the dose of her injections — which had previously caused her allergic reactions.

Savannah said:

They’ve removed the cornerstone of my pain control so ice cubes are literally the only way I’m able to stay breathing from the acid fire inside of my body.

On Tuesday, Savannah lost consciousness after 12 hours without pain relief. She expressed after waking that:

It’s not pain, it’s another plane of existence that no human could and should be forced to endure.

Gaslighting and psychologisation

A female doctor at QEH told her she is “doing very well” under this new regime. She asked Savannah:

How are you going to live if we keep medicalising this?

On Tuesday, a psychiatrist woke and interrogated her for half an hour. Savannah had to repeatedly defend the biological neuroimmune basis of ME as he asked questions like “have you ever been sexually abused?”, “how is your parents’ relationship?” and “how was it growing up as the middle child?”

He returned on Thursday to ask Savannah why she wasn’t getting out of bed.

Savannah said:

I’ve spent the entire night screaming and he’s coming in and asking me about the power of suggestion.

She added:

They just say they don’t believe it’s psychological. They say they think it’s a real chronic illness. They just…won’t feed, hydrate, medicate, treat, listen to or help me.

A biopsychosocial clinician behind her care?

On Monday, Savannah reported that the reason for this persistent gaslighting seemed to finally fall into place. A staff member mentioned Dr Gerald Coakley — a rheumatologist who worked at QEH for over 20 years (until 2023). Coakley is another Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) proponent. He has practiced these at his private ‘Fatigue Clinic London’ since 2007.

He refers patients to Vitality 360 — a private fatigue clinic company owned by Jessica Bavinton, an author of the disgraced PACE Trial. Coakley also co-authored a 2022 book on ME with BACME trustee and Vitality 360 executive manager Beverly Knops. This aired his grievances over the 2021 NICE guidelines.

Savannah noted:

People report really bad experiences with him. And he seems to be leading my care, without my consent, making decisions I do not feel safe or comfortable with, and without having ever met me. He apparently has sent the hospital NICE guidelines that say that opioids should be reduced and so should parenteral or non oral fluids and nutrition.

Of course, nowhere in the 2021 National Institute for Health and Care Excellence (NICE) guidelines for ME does it actually state this.

How you can help Savannah

Thanks to the community’s pressure, Action for ME has now stepped up to help.

Savannah said:

I am very grateful that CEO Sonya Chowdhury has stepped in personally to assist and offered to advocate for me in medical management meetings. Unfortunately, QEH have so far not taken up her offer.

Sam, who is in constant contact with Savannah, has said she is now:

worried she is going to die of organ failure.

She added:

The extreme level of pain she is now being subjected to is pushing her heart beyond what is sustainable for such a compromised body. Her suffering is medieval in its brutality and completely unnecessary.

Sam is asking for anyone who can to contribute to a GoFundMe for Savannah. This would cover medical treatment costs, including private pain management, a syringe driver, and ME-literate nursing support.

Savannah has high hopes for her future. She wants to get her A Levels, study medicine, and become a doctor. But as it stands, QEH is failing to even stabilise her. Far from it in fact. As people living with post-viral disease the world over are painfully aware, it wouldn’t be the first time a hospital has killed a severe ME patient through medical arrogance and negligence.

However, we can’t let an NHS hospital kill Savannah – or any other severe ME patients – on our watch.

Feature image via the Canary