Missteps in Creating a Long Haul COVID Case Definition Unintentional stigma is perpetuated by scientists. Vernita Perkins, PhD and Leonard A. Jason

[Sly Saint]

If difficulties occur in developing reliable case definitions, there are serious consequences for patients, as they would then be unsure whether or not they have the illness, as well as for scientists, who would then have difficulties in finding biomarkers.

This has occurred for the post-viral illness known as chronic fatigue syndrome, which most patients refer to as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The consequences have been devastating in terms of increasing stigma for these patients with ME/CFS as when biomarkers are not reliably identified, health care workers inaccurately attributed their illness to psychiatric versus more biological causes.

Will a similar fate occur for the millions of people who have not recovered from the current COVID pandemic?

Patients previously infected with COVID-19 often have persisting and new symptoms. Many have termed the post-COVID-19 infection phenomenon as “long COVID” or “long haul COVID.” If only 10% develop long haul COVID, then of the 47 million current cases in the US, there will be over 4 million individuals affected. This will have significant consequences on our health care system.

Recently, the internationally respected World Health Organization (WHO) introduced a clinical case definition for those who have not recovered from being infected by COVID. Their criteria suggest that symptoms are usually three months from the onset of infection with a duration of at least two months. Their case definition also mentions that among the common symptoms are fatigue, shortness of breath, and cognitive dysfunction.

A clinical case definition is intended to be very broad so that it can include all those who have the disorder. This is in contrast to a research case definition, which is more restrictive in criteria to identify a more homogeneous sample.

It is unclear why three months have to elapse for a person to have the WHO diagnosis. In other words, those patients who continue having symptoms after the first few weeks of COVID infection are left without a diagnosis for several months, and these first few months might be a critical time for a diagnosis that could help patients secure treatment.

The next part of the WHO case definition is that the symptoms must last for two months. We know that sometimes symptoms are delayed with long haul COVID, so if symptoms emerged three months past infection, a patient would need to be sick again for two months before being provided a diagnosis and possible treatment. It would be simpler to just indicate the amount of time that has elapsed since being infected or becoming sick, as this would eliminate problems associated with individuals not being able to have a diagnose and treatment at the critical early times in the illness.

https://www.psychologytoday.com/gb/...s-in-creating-long-haul-covid-case-definition

 

[DokaGirl]

Agreed, very important to carefully consider time frames and how they affect diagnosis and treatment, as well as the impact on socioeconomic issues for a given population.

However, on another point, I question whether "most patients" call this disease Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, as these researchers say.

Early on, I had lots of smart arse/nasty retorts when I told people I have cfs. Some of them only heard "chronic fatigue", and were abusive in official health care and other institutional settings, because they thought CFS is a fabrication.

I have found this term only brings derision and misunderstanding. It blocks communication.

I stay as far away as possible from the stigmatizing term Chronic Fatigue Syndrome.

I understand some people will think differently about the term Chronic Fatigue Syndrome.

 

[Wilhelmina Jenkins]

I know that it’s different in the UK, but most people in the US have no idea what ME is. In fact, I would argue that most patients in the US don’t call this disease ME - they just call it CFS still. ME/CFS is the preferred term with researchers, government agencies, and many of the advocates who work with both.

A year or so ago, Jaime Seltzer did a study of what hashtags were used most often on Twitter to refer to this disease. The answer was still CFS.

If this disease is as common as we say it is, there are millions of people out there who have no idea what disease they have. If they are able to get a diagnosis at all, it’s probably CFS. Everyone hates the name CFS, myself absolutely included, but it worries me that, if we don’t have a name that people outside of the activist community can recognize, we aren’t reaching people who would greatly benefit by being connected. For me, ME/CFS works to bridge the gap between various communities of patients, clinicians, researchers and government officials until science brings us a better name.

 

[cfsandmore]

In the US, I think we would've been better off to accept SEID as the new term. If I use the acronym ME/CFS with a doctor or specialist physician, I get a big lecture on the meaning of encephalomyelitis. Do physicians in the UK give patients a lecture on the meaning of encephalomyelitis? Is ME accepted better in the UK?

 

[Mij]

I've received more understanding using CFS in Canada.

 

[EzzieD]

In the US, I think we would've been better off to accept SEID as the new term. If I use the acronym ME/CFS with a doctor or specialist physician, I get a big lecture on the meaning of encephalomyelitis. Do physicians in the UK give patients a lecture on the meaning of encephalomyelitis? Is ME accepted better in the UK?

I think if that happened to me, I'd have to give the doctor a big lecture on the meaning of fatigue. Because it sure doesn't describe my symptoms. Whereas encephalomyelitis feels like what I experience, even if there's no routine lab test result to prove it.

 

[Snow Leopard]

I know that it’s different in the UK, but most people in the US have no idea what ME is. In fact, I would argue that most patients in the US don’t call this disease ME - they just call it CFS still. ME/CFS is the preferred term with researchers, government agencies, and many of the advocates who work with both.

Yes, ME is still very much a UK/Ireland thing. It isn't used much in Australia either. Worse still, non-English speaking countries end up getting badly translated versions of "Chronic Fatigue" that sound more like "ongoing tiredness syndrome".