Subject: URGENT AND TIME-SENSITIVE: Concerning Critical Care of Savannah Yulia Victora-May, Severe ME/CFS Patient
Recipients:
Ben Travis, Chief Executive Officer ben.travis@nhs.net
CC:
Dear Mr. Travis,
I am writing to you on a matter of extreme urgency and grave clinical concern regarding the care of Savannah Yulia Victora-May, a patient with Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) currently at Queen Elizabeth Hospital in Ward 1, Room 4.
As you will be aware, Severe ME/CFS is a debilitating multisystem neurological disease that renders patients exquisitely sensitive to any physical or cognitive exertion, including the profound disruption of sleep and medical procedures. ME/CFS is scientifically proven to be a biological, physiologic disease.
Savannah's current pain management regimen requires six separate oxycodone injections per day, necessitating that she be woken every four hours, around the clock. For a patient with Severe ME/CFS, this enforced and perpetual sleep disruption is actively harmful and contravenes all established expert guidance, acting as a catalyst for further physical decline.
Furthermore, her PICC line site is now oozing an unidentified discharge, a major red flag for a potential infection that could be catastrophic for a patient in her fragile state.
Most alarmingly, we understand that on 3rd April 2025, the hospital attempted to refer Savannah to the Neuropsychiatry Service at the Maudsley Hospital. While this referral was rejected, the attempt itself demonstrates a profound and dangerous misconception of her condition. ME/CFS is a biological, neurological illness, as confirmed by the landmark DecodeME study (2025), which identified clear genetic predispositions. The attempt to refer a patient in acute physical crisis to a neuropsychiatry service indicates that her symptoms were being perceived as psychiatric, a misinterpretation that directly contradicts the science and represents the kind of misunderstanding that has led to previous tragedies, like those of Sophia Mirza and Maeve Boothby-O’Neill.
The study conducted by DecodeME published August 2025, the world's largest genetic study of ME, scientifically proves with robust evidence that Myalgic Encephalomyelitis is a physiological, biological disease caused by significant genetic differences in patient's DNA. Eight genetic signals have now been identified involving the immune and nervous systems, indicating immunological and neurological causes to this severely misunderstood condition. The genetic signals that point to involvement of the system were previously found by researchers in people experiencing chronic pain, reinforcing neurological contributions to ME/CFS. None of these genes are related to depression and anxiety. Any mental health symptoms Savannah may be experiencing are what anyone in this situation would naturally be experiencing. This study received many news coverage articles and reports including BBC News, The Telegraph, The Guardian, The Independent and more.
Dr Beata Godlewska, who studies ME/CFS at the University of Oxford, recently discovered that people with ME had high levels of lactate in the anterior cingulate cortex, this points to disrupted energy metabolism in the brain, and impaired mitochondria, the battery-like structures that provide energy inside cells. These findings align strongly with the DecodeME Study.
The break-through DecodeME study and research conducted by Dr Godlewska, along with many other examples, indisputably demonstrates that there are no grounds for you to suggest any neuropsychiatry or psychology involvement within the care of Savannah Victora-May who has Very Severe ME.
The consequences of this ongoing mismanagement are severe, direct, and life-threatening. As a direct result of not receiving appropriate, physiologically-aware care, Savannah is now experiencing:
· Breathlessness to the point of requiring supplemental oxygen.
· Repeated episodes of inability to inhale, with suspected CO₂ retention.
· Neurological disturbances including dizziness, hallucinations, and loss of consciousness.
· Severe autonomic dysfunction including tachycardia, vision loss, and uncontrollable shaking.
· Cognitive dysfunction so severe she is often unable to communicate.
· Malnutrition due to exhaustion from the effort of eating.
· Significant tissue damage from repeated injections, including skin bleeding, welts, pooling of medication, and loss of safe injection sites.
This is a cascade of iatrogenic harm. The current treatment plan is not merely failing to help; it is actively causing her condition to deteriorate.
The solutions are both immediately available:
1. The immediate implementation of a syringe driver for continuous subcutaneous infusion of her pain medication (This has been formally recommended by her ME Specialist, who has over 40 years of experience in the management and treatment of people with Severe and Very Severe ME/CFS)
2. The urgent, senior-led review and microbiological investigation of the oozing PICC line site.
This request is made with the recent and devastating findings from the Prevention of Future Deaths report into the death of Maeve Boothby-O’Neill firmly in mind, which highlighted a “lack of understanding of the complex nature of ME”.
We therefore demand that you intervene immediately to ensure:
1. The urgent assessment and implementation of a subcutaneous syringe driver.
2. An immediate senior medical review of her oozing PICC line.
3. A full, senior-led review of her entire care plan to ensure it is fully aligned with the NICE Guideline NG206 for ME/CFS and that all staff involved understand the biological basis of ME/CFS.
An ME Specialist Doctor and member of the NICE Guideline Development Group for ME/CFS with over 40 years of experience in the management and treatment of severe and very severe ME/CFS, has directly contacted Savannah's doctors Queen Elizabeth Hospital to strongly urge they implement these important interventions stating that "Savannah's condition is at a critical stage. The syringe driver is not optional; it is essential to Savannah's survival and to any possibility of stabilising Savannah's condition."
We will now be escalating our efforts to gain publicity of the inappropriate, harmful and dangerous treatment Savannah is receiving, despite continuous pleas and advice from an ME Specialist Doctor, by contacting necessary organisations such as ME Action, ME Association, MP's and all 33 Members of the All-Party Parliamentary Group for ME. We have created a petition which has already gained the support of over 2,000 people and this will continue to grow.
If Queen Elizabeth Hospital continues to ignore these pleas, then National Media and Newspapers such as BBC, ITV News, The Telegraph, The Times and Sky News and other media contacts will be notified of this situation. These media outlets have all reported on ME neglect cases before and I'm sure they would be very interested to know what is currently happening to a young person who is under your care. Savannah's advocates will, in addition, contact Medical Negligence lawyers and pro-bono services who they will be seeking specialist advice from if they are not given a response from yourselves which demonstrates progress towards the essential interventions stated above.
Savannah's situation is a medical emergency caused by inappropriate care. The refusal for appropriate treatment is the direct cause of her deterioration. We expect your urgent and personal intervention and co-operation to resolve this matter today and await your immediate response and confirmation of action taken.
We will await a date and time of the meeting this week to discuss Savannah's care.
Kind regards,
[Your Name]
We Stand with Savannah
Please send your response to Savannah Victora-May: SY.Victora-May@outlook.com