Have you ever had an ECG and been told your heart is fine?
In the 2020 long Covid coverscan study 1 in 5 (19%) patients had myocarditis. This is inflammation of the heart. Have we diagnosed 1 in 5 long Covid patients with myocarditis in real life? Absolutely not. We have so many patients with undiagnosed chest pain. And when I ask a patient with chest pain what tests they have had I hope they tell me a 'cardiac MRI'. This rarely happens. The coverscan study was originally a gallbladder study that changed to long Covid study due to the pandemic. They used MRI to scan the organs.
In this graph the first 2 bars are myocarditis. Grey is healthy controls . Black is post Covid syndrome. Clearly the post Covid patients had much higher rates of myocarditis
Many of my patients have had an ECG and troponin
( heart blood test) for chest pain but no cardiac MRI. They may even have an echocardiogram. But not a cardiac MRI. The only modalities that absolutely rule out myocarditis are cardiac MRI and strain echocardiogram ( different from normal echo). Yet they are told their heart is fine without one.
So we STOP SHORT of actually diagnosing or ruling out myocarditis. As a doctor it is very frustrating. I cannot tell someone having chest pain it is nothing to worry about without all the tests having been done.
Another cause of chest pain is blood clots (pulmonary emboli-PE). Covid increases the risk. Often patients have had a chest X-ray and ecg and been told they are fine. Do these tests rule out PE? No. A d dimer blood test may be increased. But we found with Covid that like a troponin in myocarditis, d dimer can still be negative in PE. Oxygen saturations can be normal- I've seen it. Patients may even have had a CTPA ( Ct with contrast of the lungs to look for PE). Does that fully rule out a blood clot? No. A V/Q scan is the only modality to do this as it can pick up peripheral clots. Prior to Covid it was the first line test for PE. But it takes at least one hour. CTPA is much quicker. So they became first line. And V/Q scans have almost become history. So again we just STOP SHORT of getting the diagnosis. I cannot tell someone with symptoms of a clot that clots are fully ruled out without a v/q scan.
In the Dr Al-aly study 'Postacute sequelae of COVID-19 at 2 years' The Risk of PE at 90-180 days post-Covid is 1.94. Eg nearly double in non-hospitalised patients (top line, 2nd box from the left).bottom row is hospitalised patients . Risk is 6x higher for the same period for hospitalised patients. The risk decreases by the last box (720 days after infection) but remains elevated for hospitalised patients at 1.65x
POTS- postural orthostatic tachycardia syndrome. A condition where blood stays in lower half of body on standing, causing the heart to race to compensate. Up to 80% of long Covid patients may have POTS and it has been found to be as disabling as heart failure. Nearly all of my patients have POTS, especially if they have post exertional malaise. Often someone is given an ECG, a 24 hour ecg, a chest X-ray, a CT scan. All normal. All long Covid and ME/CFS patients will know how frustrating a raft of normal tests are when they feel so unwell. But no one has STOOD the patient UP for 10 minutes to see what the pulse and blood pressure does. Sometimes it's done for a minute and the patient is told no POTS. Again we just STOP SHORT of getting the diagnosis. Any long Covid patient with palpitations, dizziness, fatigue, brain fog, chest pain, shortness of breath or purple feet on standing should have a ten minute stand test.
Burning hands and feet? Often referred to as neuropathy. Patients have bloods for b12/folate/thyroid/glucose. In the setting of long Covid this is likely to be small fibre neuropathy. Damage to the tiny nerves by inflammation. Nerve conduction studies can be normal. However, the correct test for this is a skin biopsy. Again we just STOP SHORT of the right test to get the diagnosis and tell patients all tests are normal instead.
Dry eyes and mouth? A diagnosis to consider is Sjögren's syndrome. A blood test is done for ANA. If it's negative patients are often told it's not sjogrens. Again we just STOP SHORT of the correct test. If ANA is positive you may diagnose sjogrens. But 50% of sjogrens patients have a negative ANA. The correct test in this case is a lip biopsy.
There are so many examples in medicine of either the right test not being done, or tests with false negatives not considered, I could write pages on this.
If I am going to tell someone they are FINE then I want the evidence to back it up.
People ask what do you even do at a long Covid clinic? I assess every symptom and make a differential diagnosis. I look at tests done (or not) and bearing the above in mind invariably find that we have stopped short of being able to rule something in or out and reassure someone. This is as important a part of an assessment as deciding on a medication.
We are taught not to over investigate people. Some tests can cause complications. The NHS state that 1 in 4 patients who see a GP have a physical symptom that cannot be explained. This is hardly surprising when we keep stopping short. These are named 'medically unexplained symptoms'.
I don't like medically unexplained symptoms. The assumption is anxiety or 'functional'. I don't like that either. Patients tend to know their own body and know if they are anxious. Doctors are taught to:
'Acknowledge that the symptoms are real and distressing'
'Acknowledge that medicine has limits and the uncertainty is frustrating'
However they are not taught not to STOP SHORT of the right test in the right patient at the right time. Often some explanation is given about the body and the mind being connected. They are connected of course but if you have chest pain and you have not had the right tests you cannot call it medically unexplained. It is now a term that seems to be used when we haven't done the tests and therefore not found the answer. Of course we do not want to over investigate and cause harm. However if 1 in 5 patients had myocarditis in a long Covid study, and we don't diagnose even a few % of those, that's a lot of people with myocarditis that is being called medically unexplained.
Often other doctors get upset when I point out that we have stopped short. However I cannot leave patients without the correct investigations. But I am not a cardiologist. So if I want a Cardiac MRI I have to refer to a cardiologist. They then make the decision. We need to empower patients to ask for correct tests.
Why is this happening? I suspect the training ( don't over investigate and 1/4 of presentations are medically unexplainable) and lack of NHS resources is a lot to do with it. It is now the culture. I asked a cardiologist knowledgeable about long Covid about this. They said the wait to a cardiac MRI is 2 years with current demands. How on earth would we scan all the long Covid patients too? How indeed.
We need to do better. In an ailing public health service this will require more resources. Maybe then we could teach not stopping short and being thorough.
3-4 % of the population have long Covid. I predict this will only go up given the Canadian study showing the risk of long Covid by infection number 3 is a staggering 38%.
5% of people have a rare disease- so it's not rare to have a rare disease! Patients frequently describe a long and protracted ‘diagnostic odyssey’, taking years, or even decades. 80% have a genetic basis, yet we have such limited access to genetic testing in medicine in 2024. Ancestry sites seem to have better access.
So how do we make these diagnoses without the tests? Many diagnoses can be made without tests but we need to know which ones need what tests. The right test. Know the false negative rate and tell patients this. Do they want anymore tests if the false negative rate is 1% compared to 50%? We need to engage our brains and want to find the diagnosis. I was once told by a doctor at my own appointment that specific diagnoses were not helpful as people would dwell on the symptoms and prognosis. Better to be oblivious. I changed doctors.
With the pandemic (that we are still in) and the multiple waves of Covid a year, adding cumulatively to the risk of long Covid, we are going to have more and more people with multiple symptoms. The easy route would be to do an ECG and call them Unexplained and tell people you believe them and the mind and body are connected.
The harder way is to draw up a list of the correct investigations for the symptoms and review with results.. I pick harder, every time, not stopping short.
Thanks for reading, I hope this was useful.
Some Further reading:
Coverscan study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8727683/
'Postacute sequelae of COVID-19 at 2 years' https://www.nature.com/articles/s41591-023-02521-2#Fig1
Experiences of Canadians with long-term symptoms following COVID-19 https://www150.statcan.gc.ca/n1/pub/75-006-x/2023001/article/00015-eng.htm
Small fibre neuropathy after Covid. https://www.medicalnewstoday.com/articles/nerve-damage-in-long-covid-may-arise-from-immune-dysfunction#Patient-recruitment
Sjögren's syndrome https://www.medicalnewstoday.com/articles/233747#treatment
Australian GP teaching resource on medically unexplained symptoms. https://www.racgp.org.au/afp/2015/september/managing-medically-unexplained-illness-in-general
Rare diseases in GP https://bjgp.org/content/66/652/550