Surgery & Anaesthesia

15. Surgery & Anaesthesia

Surgery is a particular challenge for people living with Long COVID, ME/CFS, PEM, or POTS — not only because of the procedure itself, but because fasting, immobility, stress, and the anaesthetic together combine exactly the triggers that, individually, can already set off a crash (PEM). At the same time, surgery can rarely be postponed indefinitely, and most people with these conditions face it at some point. This article summarises what the current UK specialty guidance says, what experienced ME/CFS clinicians have reported for years, and what can concretely be prepared in advance.

Important: This text does not replace a conversation with your anaesthesia team. It is meant as a starting point for that conversation — so your situation doesn't come up for the first time during the pre-op assessment, but arrives already thought through, with the right questions ready.

What the current guidance says (RCoA 2024)

The Royal College of Anaesthetists published the first dedicated patient information leaflet on ME/CFS and anaesthesia from a major specialty body in 2024, citing growing numbers of patients asking about it and a lack of systematic guidance beforehand. The leaflet is deliberately cautious: it states there is "limited published evidence linking a worsening of ME/CFS directly to anaesthetic drugs," and no evidence that any specific anaesthetic causes reactions in every patient. Rather than blanket drug bans, it focuses on individually tailored care. Key points:

• Dysautonomia/POTS is named as its own risk factor. It occurs more often in ME/CFS than in the general population and can lead to lower blood pressure or a higher heart rate after surgery — sometimes requiring extra intravenous fluids or, in more pronounced cases, brief monitoring in a high-dependency unit.
• Fasting is kept to the medically necessary minimum — clear liquids are usually allowed up to two hours before the anaesthetic; with dysautonomia, electrolytes can be added, and for larger procedures, carbohydrate and protein drinks the night before and again a few hours before surgery.
• Off-label medication needs to be known. The guidance specifically names low-dose naltrexone (LDN): it blocks opioid receptors and can reduce the effectiveness of post-operative pain relief, so it is typically stopped two days beforehand and resumed once acute pain management is complete — only in consultation with the prescribing team.
• Recovery is unpredictable. Some people experience a prolonged worsening after surgery, others no significant after-effects at all — the guidance explicitly describes this as "very difficult to predict."
• The recovery room may need particular consideration: dimmed lighting, lower monitor volumes, fewer staff in the room, a single room on the ward where possible. Some patients report being temporarily unable to speak after anaesthesia despite being conscious — the team should be prepared for this.
• Mobilisation following the pacing principle: early mobilisation is medically sensible after most operations, but with ME/CFS it needs to follow your own energy limits rather than a fixed ward schedule.

The full guidance and its summary are free to read at the RCoA: rcoa.ac.uk — ME/CFS and anaesthesia.

Precautions often reported from clinical experience

Alongside the current RCoA guidance, recommendations from individual ME/CFS specialists have circulated for roughly two decades — chiefly from Dr. Charles Lapp and Dr. Paul Cheney (both US-based) as well as the Swiss Society for ME & CFS (SGME), which offers a printable emergency anaesthesia card. These recommendations come from years of clinical experience with ME/CFS patients rather than controlled trials — the RCoA guidance rates the overall evidence as limited. They are included here anyway because they are widely known in the community and work well as concrete talking points for the pre-op consultation — not as medical instructions to be enforced by patients themselves:

• Magnesium and potassium. Intracellular depletion is observed more often in ME/CFS; both clinicians recommend checking serum levels before surgery, since deficiency can raise the risk of cardiac arrhythmia under anaesthesia.
• Histamine-releasing agents. Certain older anaesthetics and muscle relaxants (e.g. the curare family) are known histamine releasers and are named by both physicians as best avoided, since allergic and histamine reactions are said to occur more often in ME/CFS. Propofol, midazolam, and fentanyl are both described as generally well tolerated.
• Orthostatic intolerance and fluid balance. Because of frequent neurally mediated hypotension (NMH) and low plasma volume, Lapp and Cheney recommend targeted hydration before surgery and caution with agents that can precipitate circulatory collapse (catecholamines, certain vasodilators, and blood-pressure-lowering drugs) — consistent with the RCoA's dysautonomia caution.
• Use sedatives sparingly. Heightened sensitivity to benzodiazepines, antihistamines, and other sedating medication is reported consistently by both clinicians and the SGME — titrate doses carefully rather than following a standard schedule.
• Disclose herbs and supplements. Garlic, ginkgo, ginseng (bleeding risk), ephedra, kava, valerian, St John's wort (CYP450 interactions), and echinacea are named as worth mentioning; the usual recommended washout before an elective procedure is one to three weeks.
• Avoid hepatotoxic anaesthetic gases, per Cheney, who points to possible subclinical liver strain from reactivated herpesviruses in some ME/CFS patients.
• Keep an eye on cortisol/the HPA axis. In severely affected patients, checking cortisol output before surgery can be useful; anyone on long-term steroids may need a perioperative dose adjustment based on clinical judgement.

None of these points is a blanket prohibition — they are questions worth clarifying with the anaesthesia team in advance, not requirements that ME/CFS patients need to enforce themselves.

Preparing: what to discuss and bring

• A complete medication list including supplements, herbs, and off-label treatments (e.g. LDN) — with the timing of the last dose.
• Known intolerances and past reactions to anaesthetics, described as specifically as possible.
• A diagnosis of POTS/dysautonomia, if applicable, ideally documented by a physician.
• A request for a proper pre-assessment consultation rather than a short phone call, if the situation is complex.
• For pronounced sensory or light sensitivity: request a quiet waiting room or bed in advance.
• For day surgery: ask for a later slot if energy is typically lowest in the morning.
• Ear plugs and a sleep mask for the recovery room or ward.
• Informing your GP ahead of time so post-operative support (district nursing, occupational or physiotherapy) can be arranged early.
• Bringing a trusted person to the pre-op consultation where possible — especially with cognitive symptoms, a second person helps with listening and follow-up questions.

The recovery room and the time after

After anaesthesia it can take a while for speech and orientation to feel normal again — this isn't specific to ME/CFS, but is reported more often and for longer by people with the condition. Non-verbal ways of communicating (e.g. a card reading "I need quiet/lights off/water") can help here. Early mobilisation after surgery can be combined with your own pacing approach: as much as is medically sensible, but in small, controlled steps rather than a fixed ward schedule. Planning a follow-up period of reduced activity — days to weeks — and discussing it in advance with an employer, family, or care provider, may reduce the risk of a post-operative crash, even though no controlled studies exist on this specifically.

With severe or very severe ME

For people with severe or very severe ME, all of the above applies with extra weight: a low-stimulus environment is not a comfort but medically relevant; communication may need support from a trusted person who can speak on their behalf; and the journey to hospital, the waiting, and the transport are themselves already part of the burden and should be planned for — not just the procedure itself.

The emergency card as a starting point

The SGME offers a free, two-page printable emergency anaesthesia card at sgme.ch/infomaterial, summarising the key points for an anaesthesia appointment and leaving space for personal details (emergency contact, comorbidities, intolerances). It doesn't replace a conversation, but works well as a memory aid and conversation starter. Anyone already using the mypacing emergency card can use the diagnoses, medication, and contact details stored there as the basis for such a document.