Kent & Medway Long Covid Network                                                                Edited by: Dr N.Banik GP   Sept 2021

Dear Kent & Medway Patients,

Recovering from Covid: What to know

After nearly two years of the Covid epidemic our understanding of the long term impact and treatment of this new disease continues to grow. We know that as many as 1 in 12 patients will find the recovery both prolonged and difficult;. Although many people affected by Covid-19 will get better in the first 6-8 weeks of illness; some will still be struggling beyond this early phase and if still having symptoms beyond first 12 weeks are said to have got Long-Covid or post-Covid syndrome1. It follows an unpredictable waxing and waning course with dozens of symptoms both physical and mental being linked to it.

These problems which may appear weeks or months after the start of the illness include: low energy & intense fatigue, breathlessness, aches and pains in muscles/joints, pains in chest & lungs, palpitations, alteration & loss of smell; stomach & bowel symptoms like nausea/abdominal pains/ diarrhoea; mental health problems like anxiety-depression; brain fog with sluggish memory and dizziness. Younger adults and occasionally children can also get affected by the Post-Covid syndrome1.

Some ideas we have picked up from UK and International studies:

  • Post-exertion symptom relapses. Physical or mental workload beyond the patient’s “energy envelope” may cause an exacerbation of symptoms including fatigue, fever, myalgia, and breathlessness. Relapses may manifest immediately or after a delay of 24-48 hours and may last days or months
  • Autonomic nerve dysfunction, manifesting as PoTS, occurs commonly and can lead to faints, dizzy spells, tremors/shakiness and palpitations. Details of POTS and POTS plus see: https://www.potsuk.org/
  • Histamine imbalance or mast cell activation is being increasingly recognised and the role of Low Histamine diets and Histamine blockers will need further research to clarify benefit. Such patients may exhibit sensitivity to histamine-rich foods and prominent GI symptoms (bloating, cramping pain, diarrhoea, acid reflux). See UK dietician association expert advice from: https://www.bda.uk.com/resource/low-histamine-diets-and-long-covid.html

Post Covid Management Help available:

Up-to date information about Long Covid can be found on the following reliable websites:

Patients without internet/online facilities can ring  9am-5pm helpline 0300-2225942 where you can speak to one of the Asthma UK/BLF team about post Covid symptoms and help available.

Both websites have latest patient guides on symptoms and steps to take to promote a steady recovery. Your-Covid-Recovery is also linked to pulmonary rehabilitation program for patients who are under the NHS rehab teams. They will also be given an app to monitor progress via a web interactive program.

Social media support groups: We now have groups created and supported by British Lung Foundation and Macmillan UK which contain many useful ideas from fellow patients and professionals. https://www.selfhelp.org.uk/COVID-19_Survivors_Group_UK

Helping UK Research Teams: Covid-19 and the SARS-2 virus has created an entirely new illness which health care teams around the world are learning about and having to manage as best as they can. However a large number of trials are going on and even reporting your symptoms back to NHS teams like ZOE symptom tracker www.covid.joinzoe.com can help researchers in understanding Covid better.  If you do not have access to the internet, your symptoms can be reported by a relative or friend with a smart phone/online access on your behalf. Four long term trials are enrolling long Covid patients: See NIHR website details https://www.nihr.ac.uk/news/185-million-awarded-to-new-research-projects-to-understand-and-treat-long-covid/26895

Referral to specialist led post Covid service

Patients who are not recovering with self-management guidance or have more severe problems; need a GP clinic assessment and should be entered in patient GP records as having post-Covid syndrome; and then referred to Long Covid Multi-disciplinary Team clinic for a detailed assessment by experienced clinicians. This service covers all areas of Kent/Medway and can be used 12 weeks after the acute illness first struck. Outcomes can include:

  1. Pulmonary rehabilitation referral & registering with Your-Covid-Recovery program & App.
  2. Consultant clinic specialist review e.g. by chest, cardiology or rheumatology
  3. Mental health problems assessment and referral to counselling or other well-being measures.

Well-being & mental Health Support: NHS Counselling teams are accepting Long Covid mental health self-referrals either online or by phoning. See what is available in your area on: https://livewellkent.org.uk/                 The MIND website3 has good resources for mental health well-being of adults and children [Young-Minds] support; as does the Live-it-well Kent council website and BBC mental health iplayer TV programs. Many patients have found mindfulness and meditation of great benefit: https://www.nhs.uk/mental-health/self-help/tips-and-support/mindfulness/

Encouraging singing for health recovery: Music and singing has proven benefits for mental health/dementia sufferers/ Parkinson’s disease and COPD. Much work has been done by Kent based organisations like the CANTATA trust Canterbury and music4wellbeing. They are running internet/web singing group for lung health/post-Covid recovery program which is enrolling patients under the banner ‘sing to beat Covid’. www.singtobeat.co.uk/covid-19. A similar approach is also being organised through British performing arts group BAPAM4 with education programs and videos and the ENO/English National Opera.

Further Reading:

  1. https://www.nice.org.uk/guidance/ng188
  2. www.guidelines.co.uk/infection/nice-long-covid-guideline/455728.article
  3. https://www.mind.org.uk/information-support/coronavirus/coronavirus-and-your-wellbeing/
  4. https://www.bapam.org.uk/long-covid-patient-experience-and-support-groups/