Long-Haulers Are Redefining COVID-19 - The Atlantic

“It’s like every day, you reach your hand into a bucket of symptoms, throw some on the table, and say, ‘This is you for today,’” says David Putrino, a neuroscientist and a rehabilitation specialist https://www.theatlantic.com/health/archive/2020/08/long-haulers-covid-19-recognition-support-groups-symptoms/615382/

I could not agree more with the suggestion that the division of the disease became hard wired in a very damaging way right from the very beginning.

You get better or you die.

Most will get better.

Mostly it’s the elderly who die so that’s OK
Likely would have died soon anyway

“Mild to moderate” mostly refused testing.

Average age if long haulers 44, most previously fit and healthy - very different from the typical portrait of a COVID 19 patient.

Indeed many have received little or no medical attention at all.

“Mild” is often anything BUT mild.

Lauren was initially told she likely had acid reflux and was refused a Covid test.

150 days later she has experienced a roller coaster of symptoms. She is just 32 year old.

Canadian Neurologist Igor Koralnik says the symptoms resemble Dysautonomia - an umbrella term for disorders that disturb the autonomic nervous system - breathing, heart rate, blood pressure, digestion. Caused by a virus or over zealous autoimmune response.

Post exertion malaise is common. 90% of cases

Maybe we will get to understand chronic fatigue syndrome better if we attack our understanding of CIVID long haulers more systematically and more deeply.

As @Dr2NisreenAlwan a Public Health Professor from Southampton Uni says.
1/ Death is NOT the only thing that counts. (Especially when the DHSC data is busy DISCOUNTING people who test +ve and have Covid on their death certificate (see PHE chart)

2/ We should stop using the term “mild” from the definition of all those not hospitalised. In fact I’ve seen it referred to for cases hospitalised but not in ICU.

There is a range of severity and that needs to be seen and categorised more precisely.

3/. “We cannot right what we do not measure”. And that includes quality of life measures and seeing beyond NO or negative test (given so many millions around the world never even got that far or were tested far too late).

False negatives are more common over time

Some showed typical glassy opacity in the lungs but tested negative.

On average long haulers who tested negative show the same range of symptoms as those who tested positive, but re in danger of being shut out of research/treatment.

Antibody tests can ALSO produce negative results especially if they are administered too soon (needs 28 days to develop) or too late (they fade and are mostly gone after 2-3 months in most patients).

Although the U.K. Gov has allocated £11 million to the study of Long Haulers you have to have been admitted to hospital to be included in the study,

As @trishgreenhalgh points out this makes no sense and means a whole other population of the non hospitalised is just left out.

The US CDC is even worse.

Meanwhile the Body Politic group keeps collaring information, surveying 640 members.

Most START feeling better after four to five months but set backs are common.

But the burden of disbelief from doctors, employers, friends and family ales it harder to bear.

Patients displaying symptoms of heart attack and stroke have been treated as psychiatric cases and even referred for psychiatric evaluation.

That’s enough to turn anyone nuts!

“Medical gaslighting” adds to the burden. It is a relief to many when their doctors take them seriously and recognise symptoms as being connected to COVID.

Even if they have no solution, being taken seriously is consoling and means there is hope of research and solutions soon.

Whilst this is happening in some places there are huge geographical deserts where no help and no understanding or interest is available.

Meanwhile patients need to dispel the idea that you can just “push through” the symptoms even tho ‘ others may bounce back to health quickly.

Whilst some programmes of medical support are available to those who HAVE had a positive test, what about all those who were refused tests or simply knew that none were available.

Or whose symptoms did fit with the ones itemised by the WHO but were NOT in the ones required by a particular healthcare system.

Last time I looked the WHO had 8 symptoms.

The U.K. allows tests if any one of three of them are present.

Purring takes the non test positive patients seriously because he is hearing the same tale over and over.

And because his wife, eventually diagnosed with rare Ehlers-Danlos syndrome went through the same cycle of medical gaslighting.

It took three years for a diagnosis.

Others, who have previously trivialised ME/chronic fatigue syndrome are now facing the diagnosis themselves. That is a bitter experience and they don’t want to be labelled that way with a chronic disability with no known cure.

But the fastest route to a cure is by measuring it

Purring says - Let’s just start collecting the data and helping people. An overlap with other known conditions might not mean the same biological route or the same pathway to improvement.

Meanwhile we have a wave of the chronically ill and no known treatments.

Everyone wants their lives back.

Some face losing their job whilst others have more accommodating employers.

At least support groups mean that people don’t necessarily have to walk completely alone.

“We don’t want to be seen as complainers”

If they lose their jobs they are then thrown into a system of unemployment and disability benefit under increasing strain due to the economic ravages of Covid.

And still feel very unwell months and months later.

Throughout the pandemic systemic failures of Fovernment have been portrayed as personal ones.

There are Government and policy choices ahead that will affect the pathway of those recovering.

Education and research within the medical and scientific community.

“If people are to recover you have to create conditions in which they can recover” (Copeland, a sports psychologist from Sheffield Hallam).

Repeatedly we have seen many citizens and businesses take matters into their own hands sooner than Governments and persist a lot longer than messaging from Governments have suggested is necessary.

Likely the same with this.

We are ALL in it for the long haul.

Indeed, for those of us fortunate enough not to have had COVID YET, it may be our turn next.

We are all in this together

@Dr2NisreenAlwan has provided links to other resources which I attach here.

But I agree with this “Symptoms lasting several weeks and impairing a person’s usual function should not be called mild” https://twitter.com/dr2nisreenalwan/status/1296785775820976129