Healthed CPD · Brisbane · 5 Sep 2026 · ~27 min
Managing ME/CFS and long COVID: when “normal” isn’t enough
A case-based GP briefing on post-exertional malaise, the energy envelope, pacing (not graded exercise), autonomic overlap including POTS, and why believing the patient is clinical care — not optional kindness.
Long COVID meets ME/CFS
Since COVID, clinics have seen a wave of people with persistent symptoms after infection — and a clearer overlap with longstanding myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). The speakers framed this as a case-based discussion: “when normal isn’t normal enough.”
Audience poll from the room: most GPs already see long COVID; many also see ME/CFS — and the point of the hour was that you almost certainly have both groups in your book, even if the label has not been written down yet.
Numbers from the talk (as stated on stage): roughly 250,000 Australians were thought to have ME/CFS before long COVID; combined burden may approach about half a million. About 50% of people who develop long COVID were described as progressing into an illness that looks like ME/CFS — clinically hard to tell apart after a year.
COVID put post-viral fatigue syndromes “on the map.” That does not mean ME/CFS is new — epidemics of post-viral illness were described mid-20th century, and the speakers noted historical figures such as Florence Nightingale have been discussed in this light. Before X-rays, broken bones still existed; before a perfect biomarker, ME/CFS still exists.
What ME/CFS is (and isn’t)
Dr Richard described ME/CFS as involving immune dysfunction, mitochondrial dysfunction (the slide said “failure,” but he corrected: if mitochondria fully failed, the cell would not work — it is dysfunction), and autonomic dysfunction (including POTS, heat/cold sensitivity, and symptoms that “don’t quite make sense” until you look for the pattern).
Triggers discussed: infection is common — Epstein–Barr and other viruses (Otter heard “cytochrome”; stage context was cytomegalovirus-type triggers), mosquito-borne infections such as Ross River and Barmah Forest for country doctors, and ME/CFS-like illness after tick bite in some patients. COVID can drive the picture after symptomatic infection; the speakers also noted some people developed ME-like long COVID months later even when the acute illness seemed mild, with possible reinfection or reactivation discussed as possibilities.
Post-exertional malaise — the hallmark
The diagnostic engine is the history. The hallmark is post-exertional malaise (PEM) — not ordinary tiredness that improves with a good night’s sleep or a walk.
PEM means: after activity that may look modest (shower, conversation, stress, a short outing), the person crashes — often delayed by hours to about a day — and does not bounce back with normal rest. Recovery can take hours, days, or weeks. Pushing through can deepen the deficit (boom–bust).
Worldwide guidelines have removed graded exercise as a treatment pathway for ME/CFS. Asking these patients to “just do a bit more” can worsen the condition when they already live inside a limited energy budget. The first principle of management from this talk is pacing, not progressive overload.
Energy envelope and pacing
A patient voice played in the seminar: previously a track ranger carrying heavy packs all day; after illness, unable to exercise or work for a decade. She described herself as “a phone with a really crappy battery that only charges to less than 10%” — a limited energy envelope each day. Inside the envelope she can look and act fine; beyond it, she crashes. Symptoms feel “like a flu without the snot.” Invisible disability makes belief harder — and she was grateful she had mostly been believed.
Clinically, the energy envelope is the finite daily capacity of underperforming cells (mitochondrial ATP story from the talk). Exceed it and PEM follows. Pacing means working at roughly 80–90% of what feels possible, building rest into the day, and adapting tasks (shower chair; one meaningful activity rather than two if two causes a crash). Rest alone may not fully clear symptoms — the goal is to avoid digging a deeper hole.
Tests, diagnosis delay, NAM frame
Average diagnostic delay cited: about 6–10 years worldwide (talk also said average around 10 years). ME/CFS is not only a diagnosis of exclusion — it is an active clinical diagnosis driven by history (fatigue + PEM + sleep disturbance, cognitive impairment, pain, and often dysautonomia and other features), using frameworks such as the NAM (US National Academy of Medicine) criteria as referenced on stage.
Standard first-pass labs still matter (anaemia, thyroid, liver/kidney, B12, iron; speaker also routinely checks zinc and vitamin D). Many results will be essentially normal. That does not mean “nothing is wrong” — it means the diagnosis lives in the pattern of PEM and the functional story. Sequential extra tests can follow if the history points there, without flooding the first visit.
Over time, inflammatory and metabolic comorbidities may accumulate (weight gain / metabolic syndrome, thyroid underactivity, occasional adrenal underfunction especially discussed in long COVID context, type 2 diabetes, autoimmune-looking joint or skin pictures, malabsorption concerns including iron/B12/folate — even without coeliac disease in some patients as described).
Dysautonomia, POTS, and red flags
Stay alert for dysautonomia, especially POTS (postural orthostatic tachycardia): standing can bring marked pulse rise and blood-pressure drops, syncope, and scary instability. Professor Charlotte noted she now sees POTS more across ages — including people in their 60s — not only younger cohorts; older adults with less reserve are especially concerning. Children can also develop ME/CFS and POTS.
Other red-flag threads from the talk: unexplained dyspnoea or hypoxia; myocarditis/pericardial issues seen in some long COVID pathways; reactivated viruses (EBV, shingles). Vaccines remain important — including Shingrix in this population — with proactive counselling that a flare of ME/CFS symptoms may last longer than in people without ME/CFS. Antivirals for acute COVID (both brands equally useful when criteria met) were highlighted as reducing long-COVID risk, especially with comorbidities.
Belief vs dismissal
Two messages from the patient clip: “my family believes me, my friends believe me, my doctor believes me” — and the invisible nature of the disability. Professor Charlotte warned against medical misogyny and against collapsing everything into “just anxiety.” Anxiety is common because living with an unpredictable illness is frightening; it often eases when people feel supported and understood. Many patients do not primarily have depression — they have uncertainty and invalidation.
Normal tests ≠ “nothing wrong.” Do not send people away with “I can’t find anything.” Say: I recognise this pattern; let’s name ME/CFS or ME-like long COVID where it fits; start with pacing; book longer reviews; manage symptoms and comorbidities longitudinally (telehealth/video helps).
Longitudinal GP care
Practical ask from the stage: if every Australian GP took on roughly 5–10 ME/CFS / long COVID patients with proper continuity, almost all patients would have a doctor. Give longer appointments (half-hour, not a rushed 15 minutes). Do a systems review. Track new symptoms. Manage sleep disturbance, pain, weight, diabetes, thyroid, iron/B12/folate. Support one sustainable day of school or work rather than pushing for a “normal” timetable that causes PEM.
Opening line when you make the diagnosis: “I’m going to look after you. I’m not sure exactly how I can help yet, but let’s start with pacing, complete sensible tests, and build a longitudinal plan.” Resources and research (including work at Sydney University mentioned by Dr Richard) are expanding — the speakers promised follow-up materials via Healthed channels.
| GP move | Why (from the talk) |
|---|---|
| Ask about delayed crash after activity | PEM is the diagnostic key — not “tiredness” |
| Teach energy envelope / pacing | First management principle; avoid graded exercise push |
| Screen for POTS and comorbidities | Do not lose red flags inside complexity |
| Longer / telehealth reviews | Continuity reduces anxiety and missed pathology |
| Believe and name the illness | Validation is part of care; dismissal harms |
Five takeaways
- Ask for PEM — delayed crash after ordinary activity is the hallmark, not ordinary tiredness.
- Pace inside the energy envelope — graded exercise push can harm; 80–90% pacing is first-line framing from this talk.
- Long COVID and ME/CFS overlap heavily — many long COVID courses look like ME/CFS by around a year.
- Watch autonomic and metabolic red flags — especially POTS across ages, plus thyroid, diabetes, infection flares.
- Believe and stay — normal tests do not equal absence of disease; longer, longitudinal GP care is the intervention.
Bottom line from the stage: these are real, debilitating, post-infectious immune–autonomic–cellular illnesses. GPs can diagnose on history, refuse dismissal, and make pacing plus comorbidity care the core of management.
All Dr Kotha CPD pages · me-cfs-long-covid.drkotha.com · coral theme