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Messages and truths from a Doctor with Long Covid



The Society of Occupational Medicine with the University of Glasgow recently held a Online Summit

"Perspectives on Long Covid and Work".

It was a half day aiming to clarify dilemmas in clinical and non-clinical practice relating to Long Covid, a complex new condition, and place it in a societal context. Its target audience was clinicians, Human Resource Leads, Long Covid patients and policy leads.

Dr Clare Rayner is an Occupational Health consultant living with Long Covid since March 2020. She has been campaigning tirelessly (?1) for people with Long Covid despite her own poor health and was recently asked by the Society of Occupational Medicine to give a talk "Long Covid: Clinical Perspectives from a multi-disciplinary view".

I have interspersed her talk with my own thoughts and explanations.

Introduction

Long Covid is a multi organ disorder it affects many part of the body and organ damage can occur as a result.

There are currently many theories as to why this occurs:

  1. An infection of the blood vessels - "endothelitis"

  2. The virus enters our cells via the ACE2 receptors which are found in most organs

  3. Persistant viral infection/presence.

  4. An over exaggerated inflammatory response.

  5. An autoimmune response - many long haulers are now being diagnosed with autoimmune disease.

Covid-19 infection also has some unusual symptoms such as oxygen desaturation on exertion. Like many of you I initially had low oxygen levels (<94%) when I was first unwell, this progressed to <80% on exertion for many, many months. I had 2 hospital admissions, 3 course of antibiotics, treatments for asthma and countless lung investigations and still I have no answer for this. At 12 months I can still desaturate on exercise and I desaturate every night whilst asleep.

The other unusual symptom is the blood clotting - people have been diagnosed with clots in the limbs, clots in the lungs and clots found in the brain. I urge you to read "I finally have a diagnosis for Long Covid and it's shocking" for a first hand account of a long hauler diagnosed with clots in the lungs 12 months after her initial infection https://mylongcoviddiaries.medium.com/i-finally-have-a-diagnosis-for-long-covid-and-its-shocking-82ddcb214656


Dr Rayner had a series of messages to present to us with Long Covid but really to our doctors, our consultants, our NHS and to our government.


Message 1

"Many of the effects of SARS-CoV-2 are predictable as we have knowledge of how other viruses affect our bodies. Long Covid is not the mystery that people are suggesting”

The common places in the body it affects are:

Cardiac - the heart

Respiratory - the lungs

Autonomic Nervous System - responsible for automatic functions such as heart rate, blood pressure, sweating

Neurological - the brain and nervous system

Neurocognitive - decreased mental function due to a medical disease



Message 2

“Medical assessment is essential”

Pathology ( ie body damage) is common and needs to be excluded. This needs to take place face to face. Many people with Long Covid have not been medically assessed. Some cannot get their doctor to accept that they even have Long Covid.

Long Covid Clinics, for many, are difficult to access. People are being turned away for reasons such as:

  • Not having a positive PCR test.

  • Not being initially hospitalised.

  • Not being referred as they do not have a LC diagnosis yet.

  • Not having a clinic available locally “post code lottery”

Most clinics are a telephone call and a referral to physiotherapy or a talking therapist!!

Dr Rayner said that those at 12 months with Long Covid should be assessed urgently and cited mylongcoviddiaries (as above).

Face to face assessment is necessary as a tachycardia fast heart rate could be any one of the following:



She reiterated the concern that many of us have that long haulers are being told their raised heart rate, either whilst resting or on exertion, is anxiety before the known complications of Long Covid are excluded.

Assessment needs to include an impact of Long Covid on function including work. For all the reasons below.



Message 3


Dr Rayner asks “is there a predictable pattern to Long Covid”?

"For those of us, who recover from the initial infection without hospitalisation, at around 10 -12 weeks is where some with Long Covid improve and some do not".


As you can see from the diagram at around 3 months this is when other new problems or worsening symptoms tend to kick in.

For me it was microvascular angina (MVA), oxygen desaturation on exertion, dysautonomia (POTS) and cognitive decline.

MY MVA and POTS were only diagnosed at 7 months and this is only because I had to pay to see someone privately. I still have no answers for the oxygen desaturations and have had no formal assessment for my cognitive decline despite this being the reason I cannot work. I am sure this rings true for many of us.

The post-exertional malaise, fatigue, breathlessness, numbness, tingling and pain I have had to research and deal with myself for 12 long months.


Message 4

"Just because you were not hospitalised DOES NOT mean you had a mild infection!!!!"

When I talk to people now about what I went through in the first few months of the acute infection and how many symptoms I had and how I didn’t have the strength to cut a carrot for dinner, or walk up the stairs , or having daily fevers of 38 +, or crushing chest pain waking me from sleep, or burning lung pain it suddenly dawns on them that maybe I was actually quite unwell. Many of us could’nt access medical care in the first wave despite desperately trying. I waited over 36 hours for a 111 doctors assessment - it never happened. Many people were told unless their lips were blue not to call an ambulence. So why is it such a difficult step for people to grasp that if you were that unwell initially there may be consequences down the line?


Message 5

"Doctors have a duty of care".

To treat you for what is wrong with you now and to help prevent what might happen to you in the future. And there are treatments available now!!

Treatments for:

  • Inflammation

  • Pain

  • Dysautonomia

  • Cardiac complications

  • Lung complications

  • Screening for diabetes, thyroid and autoimmune disorders

Earlier treatment may speed up recovery and improve function.

Physiotherapists, occupational therapists and speech and language therapists are available and should be utilised for their expertise.

Dr Rayner concluded with TRUTHS.

She concluded with this advice for the medical profession:



I hope by bringing you this fabulous presentation, whilst not giving you any answers about why you got Long Covid and what will make you better, you will realise that for every time you are gaslit by a doctor there are doctors out there who do care, are Covid-curious, and will and try to do their best for you and other Long Covid sufferers. The more we learn and share the more we WILL get the word out there.


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