Special Considerations for Severe Cases
The protocols in this chapter assume a patient who can, with support, implement multi-domain interventions. Several subgroups within the severe population face additional constraints that modify how—and sometimes whether—those protocols apply. This section addresses the circumstances that most often complicate care at the extreme end of the severity spectrum, each of which carries its own risks of medical neglect.
Bedbound patients require every protocol to be adapted for a person who cannot reliably sit upright and who depends entirely on caregivers for implementation. Nutritional failure—an underrecognised and potentially fatal complication—demands early medical intervention and a careful, non-delaying distinction between organic ME/CFS-driven eating difficulty and primary eating disorder. Patients considering medical assistance in dying warrant an explicit ethical commitment to aggressive symptom management before any irreversible decision. Financial barriers, though real, need not be prohibitive: most immediate protocols cost under $200/month and assistance pathways exist for the expensive interventions. Perioperative management addresses the elevated and largely unstudied risks—inadequate default analgesia, orthostatic instability on mobilisation, and delayed post-surgical PEM—that surgery poses for this population. Finally, structural evaluation for craniocervical instability and Ehlers–Danlos syndrome may identify a potentially treatable structural contributor in the subset of severe patients with hypermobility. Each consideration is developed in the subsections that follow.
1 Bedbound Patients
- All protocols still apply, adapted for bedbound status
- Compression: Can wear compression garments in bed; helps when tilted upright for meals
- Salt/fluids: Critical - prevents orthostatic crashes when any upright time
- MCAS: Often prominent in bedbound patients; aggressive trial warranted
- Caregivers: Essential for implementation; family/friends must administer medications, prepare low-histamine meals
- Medical neglect: Bedbound patients often dismissed by physicians; advocate fiercely or find new physician
2 Nutritional Failure and Eating Difficulties
Nutritional failure is an underrecognised and potentially life-threatening complication of very severe ME/CFS. Baxter et al. (2021) documented five cases of patients who became severely malnourished and dehydrated, in all cases because tube feeding was delayed or withheld while clinicians debated whether the eating difficulty was psychiatric in origin (Baxter, Speight, and Weir 2021). The consequences included poor wound healing, neurological damage, osteoporosis, and cardiac complications. This pattern reflects a systemic failure: clinicians unfamiliar with severe ME/CFS may interpret the patient’s inability to eat as voluntary refusal and pursue psychiatric explanation rather than medical intervention.
Mechanisms of Nutritional Failure in Very Severe ME/CFS. Multiple overlapping mechanisms impair oral intake:
- GI dysmotility and visceral hypersensitivity: Upper abdominal pain and nausea worsen significantly after eating, making meals physically distressing (Gijsbers and Bijlsma 2023)
- Orthostatic intolerance worsened by eating: The upright posture required for meals, combined with postprandial splanchnic blood pooling, can trigger orthostatic symptoms severe enough to prevent eating
- Energy cost of eating: In very severe ME/CFS, chewing, swallowing, and sitting upright may exhaust the available energy envelope, causing the patient to stop mid-meal
- Severe dysphagia: Neuro-muscular dysfunction in some very severe patients impairs swallowing
- Cytokine-driven anorexia: Chronically elevated GDF-15, IL-6, and TNF-\(\alpha\) suppress hypothalamic appetite circuits (Chapter Endocrine and Metabolic Dysfunction), reducing hunger independently of any psychological state
- Sensory hypersensitivity: Smell and taste hypersensitivity (common in severe ME/CFS) make many foods intolerable
Distinguishing Organic Nutritional Failure from Eating Disorders. This distinction is clinically important but must not become a reason to delay nutritional support (see Chapter Diagnostic Criteria and Clinical Assessment, Section Occult Malignancy for the full differential diagnosis framework). Key markers favoring organic ME/CFS-driven eating difficulty:
- Patient is distressed by inability to eat and expresses desire to eat normally
- Eating difficulty onset coincides with ME/CFS worsening, not with psychological stressors
- Physical examination and orthostatic testing consistent with severe ME/CFS
- No body image disturbance; weight loss is not desired
- Specific food triggers map onto known ME/CFS mechanisms (postprandial orthostasis, MCAS-mediated reactions, FODMAP intolerance)
Nutritional Assessment. All moderate-to-severe ME/CFS patients should receive nutritional assessment including:
- Malnutrition screening (MUST score or equivalent)
- Serum albumin, pre-albumin, CBC, electrolytes, B12, folate, zinc, vitamin D
- 3-day food diary (completed by carer if patient unable) to quantify caloric and protein intake
- Assessment of swallowing function if dysphagia suspected
- Referral to a dietitian with ME/CFS experience where available
Nutritional Interventions: Stepwise Approach.
Address modifiable barriers first: Treat nausea (antiemetics, H2 blockers for MCAS, small frequent meals), optimise orthostatic management before and during meals, reduce sensory burden during eating (quiet environment, familiar foods, minimal preparation effort required from patient)
Oral nutritional supplements: High-calorie, high-protein supplements (e.g., Ensure, Fortisip) when dietary intake is insufficient. Elemental or semi-elemental formulas if GI intolerance to standard supplements
Nasogastric tube (NGT): When oral intake is insufficient despite the above. NGT allows continuous or bolus enteral feeding without requiring the patient to eat. Nasojejunal tube (NJT) preferred if gastric dysmotility causes formula intolerance
Percutaneous endoscopic gastrostomy (PEG): For patients requiring long-term enteral feeding who cannot tolerate repeated NGT placement or whose condition is stable enough to undergo the procedure
Total parenteral nutrition (TPN): Reserved for patients with severe GI intolerance to enteral feeding; carries infection risk via central venous access
When a very severe ME/CFS patient cannot maintain adequate oral intake and is losing weight, tube feeding should be initiated on medical grounds without waiting for psychiatric clearance. Malnutrition compounds every ME/CFS pathophysiological process: it worsens mitochondrial function, impairs immune regulation, accelerates muscle loss, and increases orthostatic intolerance. The decision to pursue psychiatric assessment in parallel is appropriate; the decision to withhold nutrition pending that assessment is not (Baxter, Speight, and Weir 2021).
Eating Disorder Comorbidity in Severe ME/CFS. A minority of very severe ME/CFS patients have a genuine comorbid eating disorder (most commonly ARFID or anorexia nervosa). When eating disorder comorbidity is suspected, involve eating disorder specialists in parallel with ME/CFS management—but standard eating disorder interventions (graded exposure, behavioral activation, motivational enhancement) require significant modification to avoid triggering PEM. Psychological support for the anxiety and low mood secondary to eating difficulties is appropriate and may reduce the self-reinforcing cycle documented by Harris et al. (2017) (Harris et al. 2017).
Refeeding-syndrome risk. Restarting feeding in a severely malnourished, bedbound patient carries the additional risk of refeeding syndrome — a potentially fatal metabolic disturbance that is prevented by low-carbohydrate feeding and electrolyte monitoring. See Section “Emergency Decompensation: When ME/CFS Becomes a Different Disease”, Subsection “Refeeding Syndrome” (Chapter Urgent Action Plan for Severe Cases).
3 Patients Considering Medical Assistance in Dying
- Ethical imperative: Try aggressive symptom management before irreversible decision
- 2-week trial: Commit to full protocol for 14 days before final decision
- Transformation possible: 50–70% symptom reduction can change perspective from “unbearable” to “difficult but bearable”
- Buying time: Even if not cured, reducing suffering buys time for new treatments (research advancing rapidly)
- Support: Connect with ME/CFS patient communities; others have been where you are and found ways to continue
4 Financial Barriers
Cost figures below are approximate and reflect high-income-country pricing; they vary substantially by health system, insurance status, and country, and the assistance pathways listed are not uniformly available.
- Immediate protocols: Most components \(<\)$200/month total
- Generic medications: Request generics for all prescriptions (trazodone, gabapentin, famotidine, etc. - very affordable)
- Immunoadsorption: Expensive, but some insurance covers; medical tourism to Germany/Norway may be more affordable than US self-pay
- Low-dose IL-2: Compounding pharmacies can reduce cost significantly vs. brand-name Proleukin
- Patient assistance: Many biologics (tocilizumab, etanercept) have manufacturer patient assistance programs
- Crowdfunding: GoFundMe, patient advocacy organizations may assist with treatment costs
5 Perioperative Management
ME/CFS patients who require surgery face a set of clinically relevant challenges that are now beginning to be characterized empirically. The first retrospective study to examine perioperative outcomes in ME/CFS identified 15 patients undergoing general anesthesia at a tertiary center and matched them with controls (Steinkirchner et al. 2026).
Steinkirchner et al. (2026) found that ME/CFS patients reached lower intraoperative nadir values for systolic blood pressure (90 vs 100~mmHg, \(p\)=0.044) and heart rate (50 vs 60~bpm, \(p\)=0.012) compared to matched controls, consistent with underlying autonomic dysfunction. Despite these differences, no clinically significant hemodynamic instability occurred: no severe hypotension episodes, no excess vasopressor use, and vasopressor administration and fluid volumes did not differ between groups.
Postoperative pain was substantially higher in ME/CFS patients: maximum NRS pain score 5.0 vs 1.0 (\(p\)=0.008), with 80% of ME/CFS patients requiring opioid rescue analgesia compared to 33% of controls (\(p\)=0.039). Non-opioid rescue analgesia, oxygen supplementation, nausea and vomiting, and length of stay in the recovery unit did not differ significantly.
Proposed mechanisms: Autonomic dysfunction (lower sympathetic tone baseline) explains the intraoperative hemodynamic differences. Central sensitization, documented in a substantial proportion of ME/CFS patients, is the most plausible explanation for elevated postoperative pain burden.
Critical gap: Post-exertional malaise was not captured in this study. Routine perioperative documentation focuses on immediate outcomes; delayed PEM onset means the true perioperative burden is almost certainly underestimated.
Evidence quality: Preprint (April 2026), not yet peer-reviewed; single-center retrospective design; n=15 matched pairs. Results are directionally plausible and mechanistically coherent but must be interpreted with caution.
Pre-operative planning.
- Disclose ME/CFS and autonomic status to anesthesiology team in advance; share the Steinkirchner 2026 preprint if clinicians are unfamiliar with the literature
- Plan postoperative analgesia proactively: the 80% opioid rescue rate suggests default pain protocols are insufficient — negotiate a pre-emptive multimodal analgesia plan before surgery
- If opioids are used: be aware that opioid-mediated pain reduction can mask the energy envelope, risking PEM from over-exertion in the recovery period; communicate this risk clearly to nursing staff
- Blood pressure monitoring thresholds: lower baseline BP is expected; alert clinical team that ME/CFS patients’ “normal” may sit at 90~mmHg systolic without representing pathological hypotension requiring intervention
- Avoid elective procedures when possible during high-symptom periods
Postoperative considerations.
- Plan for extended recovery: the physiological stress of surgery can trigger significant PEM with delayed onset (24–72~h or beyond); arrange caregiver support and reduce all non-essential activity for at least one week
- Monitor pain aggressively: do not assume standard pain management will be adequate; communicate NRS scores clearly and advocate for dose adjustment
- Orthostatic challenge of mobilisation: early post-operative mobilisation protocols must account for POTS/OI — sit to stand slowly, use compression garments, ensure adequate fluid and sodium loading before any upright position
The most important perioperative risk for ME/CFS patients — a severe, potentially prolonged crash triggered by the physiological stress of surgery, anesthesia, and recovery — has not yet been studied. Anecdotal reports from patients describe crashes lasting weeks to months following procedures that were hemodynamically uneventful. Pre-operative counseling should explicitly address this risk. Where possible, minimally invasive alternatives to open surgery should be preferred.
The only available study of perioperative outcomes in ME/CFS did not assess post-exertional malaise, the cardinal disease feature (Steinkirchner et al. 2026). Whether surgical stress — involving physical exertion, anesthetic agents, immune activation, pain, and disrupted sleep — triggers PEM in a clinically significant proportion of ME/CFS patients, and how severe and prolonged such crashes are, is entirely unknown. Secondary questions include: does the severity of baseline ME/CFS predict crash severity? Do minimally invasive procedures reduce crash risk? Can pre-operative metabolic preparation (electrolytes, mitochondrial support) or post-operative pacing reduce the perioperative PEM burden? Prospective studies capturing PEM as a primary outcome are urgently needed given the frequency with which ME/CFS patients require surgery.
6 Structural Evaluation: CCI and EDS in Severe Cases
Severe ME/CFS patients with hypermobility should be evaluated for craniocervical instability (CCI), which can cause symptoms indistinguishable from ME/CFS but is potentially treatable through structural intervention. Recent imaging studies have found high prevalence of craniocervical obstructions (80%) and Chiari malformation (45%) in ME/CFS patients, particularly those with hypermobility (Bragée et al. 2020); however, these findings come from a specialized clinic and require replication in unselected populations (see Section Prospective Phenotyping as Harm Reduction for detailed evidence and caveats).
Who Should Be Evaluated. Consider CCI workup in severe patients with ALL of the following:
- Confirmed hypermobility: Beighton score \(\geq\) 5/9 or clinical EDS diagnosis
- Positional symptoms: Symptoms worsen with specific neck positions or head movements
- Cervical-specific features: Occipital headaches, neck pain, or neurological symptoms (dysphagia, facial numbness, gait instability, visual disturbances)
Evaluation Protocol.
- Upright MRI: Preferred over standard supine MRI—dynamic instability may only appear with gravitational loading. Request cervical spine with flexion/extension views if possible. Reference ranges for measurements have been established (Nicholson et al. 2023).
- Specialist referral: Neurosurgeon with CCI expertise. Standard neurosurgeons may not recognize subtle instability.
- Diagnostic criteria: No consensus exists; multiple measurement systems are used (Lohkamp, Marathe, and Fehlings 2022). Clinical correlation essential—imaging alone insufficient.
Conservative Management First.
- Physical therapy: Cervical strengthening with hypermobility-aware PT; consensus guidelines for physical therapy management are available (Russek et al. 2023)
- Cervical collar: Soft collar for symptom relief; avoid prolonged use (causes muscle weakening)
- Posture optimization: Avoid prolonged neck flexion (reading, phone use)
Surgical Considerations. Surgery (cervical fusion) is reserved for:
- Documented instability on imaging
- Failed conservative management
- Progressive neurological symptoms
- Experienced surgical team
Surgical outcomes are positive (60–80% improvement) in properly selected cases (Henderson et al. 2024) (Lohkamp, Marathe, and Fehlings 2022), but complication rates are significant (19%) (Henderson et al. 2024) and patient selection is critical.
CCI is uncommon even among hypermobile ME/CFS patients. Do NOT pursue expensive CCI workup unless:
- Hypermobility/EDS is confirmed
- Symptoms have clear positional component
- Standard ME/CFS treatment has failed to provide expected relief
For most severe ME/CFS patients, the protocols in this chapter will reduce suffering substantially without structural intervention. CCI evaluation is for the subset with specific clinical features suggesting cervical pathology.
Septad Framework Application in Severe Cases. Severe patients should be systematically screened for all seven Septad components (Section Prospective Phenotyping as Harm Reduction), with particular attention to:
- MCAS: Often prominent; Protocol 1 addresses this
- EDS/Hypermobility: Affects treatment tolerance and CCI risk
- Small fiber neuropathy: May explain pain and autonomic symptoms
- GI dysmotility: Can cause malabsorption, affecting nutrition and medication absorption
Identifying and treating comorbidities may improve response to ME/CFS-directed treatments.
7 Practical Care Protocols for Bedbound Severe Patients
The AFEMISE French edition of the Hermisson et al. (2026) care consensus expands the original statement into operational, task-level protocols for the daily care of bedbound severe and very-severe patients (Hermisson et al. 2026). These protocols operationalize the caregiver-pacing principles of Section Severe Case Cognitive Triage: Eliminate Complex Cognition across the concrete care dimensions that dominate a bedbound patient’s day: feeding, hydration, hygiene, elimination, mobility, and communication. The unifying principle is that every care act is an energy cost: each is budgeted, batched, and terminated below the patient’s tolerance threshold, and a deviation that triggers a severe PEM episode is a care failure, not a care success.
Eating is often the single largest unavoidable physical exertion in a bedbound patient’s day. It can itself trigger a severe PEM episode. Feeding protocols must therefore minimise the effort of every component — position, food texture, cutlery, timing, and the metabolic cost of the meal itself.
Positioning. Feed the patient slightly upright (head of bed raised) whenever tolerated; this facilitates swallowing and reduces aspiration risk. When orthostatic intolerance (OI) prohibits even a slight head elevation, feed fully lying down (Hermisson et al. 2026). Never insist on sitting upright for feeding if it provokes orthostatic symptoms.
Texture adaptation (graded). Progressively reduce chewing and swallowing effort:
- Whole solids with stable form are easiest to manage when lying down (they hold shape and do not spill). Cut food into small pieces within arm’s reach.
- Soft, cut foods (e.g., crustless bread) when chewing becomes effortful.
- Pureed foods and soups when chewing is no longer possible; pureeing also eases digestion and adapts to individual intolerances.
Cutlery and aids. Light plastic tableware, cups with straws, and non-slip trays reduce energy expenditure. Beaker-style cups (tasses à bec) support assisted drinking and reduce spillage and aspiration risk. Thicken liquids when swallowing is significantly impaired. Partially fill water bottles — a full bottle’s weight is itself a load. Prefer warm water, which is better tolerated and requires less metabolic effort (Hermisson et al. 2026).
Energy density over volume. When meals must be shortened to only a few mouthfuls, prioritise high-calorie-density foods and commercial liquid nutritional supplements rather than trying to maintain volume. With severe sensory or mast-cell sensitivities, rebuild the diet from a small, well-tolerated base and reintroduce foods cautiously; involve a dietitian or allergologist where available (Hermisson et al. 2026).
Hydration and oral rehydration. Maintain reliable fluid intake. For orthostatic intolerance, oral rehydration solution is helpful: 1 litre of potable water, six level teaspoons of sugar, and half a level teaspoon of salt, mixed until fully dissolved, discarded after 24 hours (World Health Organization formula; note this is not a specific ME/CFS or POTS treatment and must be used with medical oversight) (Hermisson et al. 2026).
Medication by tube. When enteral feeding is established, train caregivers in correct medication administration through the tube; individualise the enteral formula, introduce it gradually, and monitor tolerance closely (Hermisson et al. 2026). See Section Special Considerations for Severe Cases for the escalation pathway (oral supplements, NGT/NJT, PEG, TPN).
Timing and batching. Feed on a regular, reliable schedule that reduces the need for communication and decision-making. Batch feeding with other care (e.g., position change, medication) into a single consolidated care block so the patient is not disturbed repeatedly. Relax the schedule flexibly during a severe PEM episode.
Consequence: For bedbound patients, reducing the metabolic and orthostatic cost of eating often converts a daily crash-triggering exertion into a tolerable routine — this is frequently the single highest-yield care intervention for stabilisation.
Conventional nursing equates good care with complete, visible cleanliness. In severe ME/CFS this equation is inverted: preventing post-exertional worsening outranks achieving full cleanliness. Hygiene is organised around three objectives only — (1) prevent infection (intimate hygiene, oral hygiene, cleaning after soiling), (2) preserve skin integrity (pressure ulcers, inflammation), and (3) preserve dignity with minimal stimulation. All measures beyond these are optional and only performed when tolerated (Hermisson et al. 2026).
Minimal bed wash. For severely affected patients, a partial bed wash (face, hands, intimate areas) or a superficial wipe with a damp cloth is usually the least draining option. Gestures requiring effort — raising arms, turning in bed — are performed only within the patient’s safe tolerance zone.
Tolerance monitoring. Caregivers are the pacing guardians more than the cleanliness guardians. Observe and act on signs of exceeding limits: change in breathing, pallor, slowing of reactions. On any such sign, adapt, interrupt, or postpone the wash (Hermisson et al. 2026). Note that the patient may overstate capacity out of shame or a wish not to burden the caregiver — treat reported limits with respect rather than pushing beyond them.
Pressure ulcer and skin surveillance. Inspect skin regularly at exposed sites — sacrum, heels, elbows, shoulder blades, back of head, skin folds — ideally folded into care already being performed to avoid extra stimulation. Persistent non-blanching redness is already tissue damage and requires immediate pressure relief and prompt qualified assessment (Hermisson et al. 2026). Note that clinical experience suggests pressure ulcers may be less frequent in ME/CFS than in other immobilising illnesses, but risk must still be monitored.
Skin care. Maceration from moisture (sweat, incontinence, wet materials) promotes bacterial and fungal infection. Dry skin by patting, not rubbing, and dry skin folds fully. Apply cream only when wanted or medically indicated: zinc-oxide barrier products in folds when moisture is excessive; pH-neutral fragrance-free products for very dry skin. Principle: as little as possible, as much as necessary (Hermisson et al. 2026).
Hair and nails (spaced, staged). Wash hair in bed (wash cap or inflatable basin) only when the patient expressly requests it and tolerates it. Space haircuts/beard trims from weeks to months, use stable periods, split into short steps, and prefer short hair to simplify care. Check nails for infection and trim infrequently, staged — as little as one nail per day — referring to podiatry for hard or ingrown nails.
Consequence: Shifting the hygiene standard from “complete” to “safe” removes a major recurring source of PEM in bedbound patients while still preventing infection and preserving dignity.
For bedbound patients mobility is not a goal of care but a major source of stimulation and risk. Prolonged immobility raises the risk of contractures, equinus foot, and pressure ulcers, but every position change can itself provoke worsening — so positioning is always a balance struck at the individual’s current tolerance.
Transfers. Use a transfer board or sliding mat between bed and wheelchair. For short lying transfers, use carrying/transfer sheets, ideally carried by four people to reduce jolts, rehearsed in advance with another person. For longer or orthostatic-intolerant transport, use a wheelchair that reclines fully (tiltable back, raised leg rests) or a sanitary vehicle in a lying position. Agree specific needs in advance: darkness, noise protection, gentle driving (Hermisson et al. 2026).
Wheelchair selection. Weigh the chair’s weight, manoeuvrability, and vibration damping. For heavy electric chairs, telescopic ramps ease steps and vehicle loading. Ultralight transfer chairs suit short in-home journeys where no stairs are involved. Stair-assist devices (seat-integrated or wheelchair-carrying) avoid modifying the stairwell.
Fall and load reduction. Keep the environment clear of obstacles. Place extra seats to allow targeted rest pauses. Use walking aids, mobility devices, and wheelchairs to reduce effort and fall risk.
Pressure prevention balancing. When regular repositioning is required (ideally assessed by nursing staff), use gentle turning techniques that relieve pressure points without shear forces. Positional aids (pillows, rolls) stabilise joints in generalised joint hypermobility. Note that alternating-pressure mattresses are often poorly tolerated because of their noise and pressure fluctuations (Hermisson et al. 2026).
Planning unusual transfers. Any non-routine intervention with a concrete PEM risk (medical examination, housing works, emergency such as fire or mould) must be planned and prepared so it runs as smoothly as possible. Where tolerated and physician-prescribed, a preventive sedative may reduce stimulus perception and lower the risk of worsening (Hermisson et al. 2026).
Consequence: Transfer planning that is rehearsed, jolt-minimised, and matched to orthostatic tolerance converts the highest-risk activity in a bedbound patient’s day — being moved — into a predictable, controlled event rather than a crash trigger.
Language processing is cognitively costly — often more draining than processing simple sounds — and even written text engages language functions (“one cannot not read”). The presence of other people in the room is itself a cognitive load, and strong emotions (including joy) are stimulation. Communication protocols therefore shift toward a low-load, structured, non-verbal system (Hermisson et al. 2026).
Secure essential communication first. Ensure the patient can call for help and express basic needs without speech: a call button, gestures, finger signs, and simple sounds for “yes”/“no”. Agree in advance a set of signs for common needs: thirst/hunger, toilet, well/unwell, too hot/cold, too loud/bright, a severe PEM episode, pain, thanks. Use individualised symbols (e.g., a doll or plush with arms and legs to point at a body area in response to “where does it hurt?”); illustrated cards are better than written words, which engage language functions (Hermisson et al. 2026).
The stop signal. Establish a clear, unambiguous “stop” sign. On its use, all care stops as quickly as possible and the caregiver leaves the room. This is the non-verbal equivalent of the caregiver-pacing stop signal protocol (Section Severe Case Cognitive Triage: Eliminate Complex Cognition) and must be honoured without negotiation (Hermisson et al. 2026).
Limit caregiver speech. Restrict care-team communication to what is essential: a few clear, pre-prepared phrases or isolated words. Once a routine is established, it is often unnecessary to narrate the care. Convey important information (e.g., a schedule change) in a few words or signs, and phrase questions to allow a yes/no answer (Hermisson et al. 2026).
Scheduled and announced communication. Non-essential exchanges (greetings, news) occur only at appropriate, fixed times the patient can prepare for, and at the patient’s request. Announce visits — ideally shortly before, to avoid prolonged anticipatory tension. Visitors must be told they may not enter the room even after travelling, that a visit may last only moments, and that it may be non-verbal. Keep the number of people in the room to the minimum; if presence tolerance is extremely low, the patient may eat alone or use a minimal wipe wash to avoid additional stimulation (Hermisson et al. 2026).
Digital communication caution. For many severe patients a mobile phone is the last valued link to the outside world, yet its use is a common trigger of threshold-exceeding PEM. If needed, limit usage duration or, with the patient’s consent, use technical tools to restrict it; arrange alternative communication with the care team to allow temporary or lasting interruption. For an adult, the decision to restrict phone use belongs exclusively to the patient (Hermisson et al. 2026).
Consequence: Replacing speech with a rehearsed non-verbal sign system and a strictly honoured stop signal removes the cognitive cost of language from daily care and gives the patient reliable control over care intensity — a core mechanism for preventing communication-triggered PEM.