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Definitions, Epidemiology and Case History Retired GP and PoTS UK chair lesley@potsuk.org Declarations • NICE Long covid expert panel • Speaker payments for PoTS and long covid educational events Definitions (professionals, lay) – expert testimony - consult with stakeholders.mittees Acute COVID-19: signs and symptoms of COVID-19 for up to 4 weeks. Ongoing symptomatic COVID-19: signs and symptoms of COVID-19 from 4 to 12 weeks. Post-COVID-19 syndrome: signs and symptoms that develop during or after an infection consistent with COVID-19, continue for more than 12 weeks and are not explained by an alternative diagnosis. Long covid: ongoing symptomatic + post-COVID-19Epidemiology Acute covid Estimated cumulative percentage of the population who have tested positive for COVID-19 in England from April 2020 Scotland – 51.5% Wales – 56% England – 70/% N Ireland – 72.2%Long Covid An estimated 2.0 million people in private households (3.1% of the population) were experiencing self reported long COVID as of 1 May 2022 (ONS 1/5/22) (In thousands) ONS June 2022 Most common symptoms: Long covid more common in people:  fatigue (55%),  aged 35 to 69 years  shortness of breath (32%),  females  cough (23%)  living in deprived areas working in social care, education, or health care  muscle ache (23%)  with another activity-limiting health condition or disability Symptoms adversely affected the day-to-day activities of 1.4 million people (71% of those with self-reported long COVID). ONS June 2022Autonomic dysfunction (dysautonomia) Can cause Orthostatic Intolerance (OI) – symptoms in the upright position, relieved by lying down Non-specific Vasovagal Orthostatic orthostatic syncope PoTS hypotension intolerance Reflex drop in BP and often drop or Persistent Drop in BP of Presyncope pause in heart tstanding with 20/10 or to symptoms but not rate causing symptoms of OI systolic of 90 testing positive syncope for VVS, PoTS, OHAutonomic dysfunction and long covid - recent publications  Individual case reports ⇢ case series  Retrospective  Very small numbers, few/no controls  Highly selected cohort  Clinical diagnosis of covid-19  Different testing and diagnostic criteria for PoTS  All adults  Little follow up AUTHOR STUDY TIMING TESTS RESULT HIGHLIGHTS Novak et al 9LC* with OI v 10 Various including Small fibre neuropathy** in 78% LC and 50% of PoTS. Jan 2022 non covid PoTS v Retrospective 10- minute TTT Reduced mean cerebral blood flow on tilt in PoTS and LC (- 20%) Autonomic lab 15 controls 3 LC had PoTS Onset after 2-3 weeks Parker et al Dec 2021 7 LC patients with Unclear 10-minute TTT Poor response to self-management (6/7) Cardiology OP PoTS 5/7 responded to medication 2/3 responded to IVIg Goodman et al 4 PoTS April 2021 6 with LC/OI Retrospective 10-minute TTT 1 OH Autonomic clinic 3 postural hypertension Blitshteyn et al 10 min TTT or 15 PoTS, 2 VVS, 2 OH Feb 2021 20 LC with OI Retrospective 16 required pharmacotherapies Autonomic clinic stand test At 6-8 months most improved with treatment, 3 fully resolved Gall et al 50% hypermobile, 79% migraine 10 min TTT or Jan 2022 14 Retrospective stand test Chest discomfort and dysfunctional breathing common PoTS service No FU yet Townsend et al Feb 21 20 fatigued v 20 5 min stand test No autonomic dysfunction in both groups Falls + syncope non-fatigued LC Prospective Ewing’s battery No PoTS, OH patients 24 hr BPM service Monaghan et al 3 min stand test 1 met haemodynamic and symptom profile for PoTS, 5 had OH. Preprint Dec 21 85 LC Prospective 10 min tilt test Older age group (recruitment) Gerontology (62%) 32 not tilted or terminated early, 2 on b blockers *LC-long covid **Skin biopsySome observations  Mostly younger women  Often non-hospitalised  Despite cardiac symptoms, cardiac tests normal  Treated with lifestyle measures then usual medications  Often minor autonomic symptoms before acute covid 19  Some evidence of small fibre neuropathy  Reduced cerebral blood flow in PoTS and LC patient when upright-not controls  Long covid PoTS mirrors non-covid PoTS In long covid orthostatic intolerance can be due to: - Orthostatic hypotension - Vasovagal syncope - PoTS - Non-specific OI  Prevalence of PoTS in long covid unclear – 1  Approx. /5of LC clinic patients have autonomic symptoms  Clinic referrals doubled or trebled Case history - 37 year old lady Symptoms June 2021 New fluctuating symptoms  Fever  Fatigue and brain fog  Cough  Fast palpitations during the day when active  Breathless  Loss of taste and smell  Heavy chest pain.  Light-headed when standing  Urticarial type rash Positive PCR test for Covid-19  Insomnia Symptoms settled after 1 week except still breathless, though less than before Prickling pain and pins and needles in lower legs and arms  one flight of stairs-struggles withPMH  Mild asthma – on PRN salbutamol inhaler IMMUNISATION st  Had 1 covid vaccine prior to acute covid-19 infection FAMILY HISTORY  Parents born in Pakistan  palpitations before he died.ged 48. He complained of chest pains and  Single mum of 2 children (6 and 10 years), older one has prolonged fatigue after covid-19 infection EMPLOYMENT  Bank nurse - self employed  Income protection insurance will not provide payment as they assessed her fit for work despite GP providing with fit notesImpact of long covid She is extremely tearful that:  3 had failed attempts to return to work when she briefly felt better.  Nursing is her purpose in life, and this has been taken from her.  Some work colleagues are highly sceptical about her diagnosis, seem to have lost respect for her, and are resentful that she is isn’t returning to work  She is a burden on her elderly parents who help her with childcare  She has financial worries due to loss of income