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A new phrase – “long cold” – recently entered the medical lexicon. A “long cold” is what you have if you fail to recover from an ordinary respiratory virus. That idea, of course, is not news to people with chronic fatigue syndrome  (ME/CFS) – many of whom became ill after some sort of unidentified common cold. It is, though, to the rest of the world.

The idea that post-infectious illnesses exist is not news anymore. It’s clear that more or less major pathogens (Epstein-Barr virus, SARS-CoV-2 coronavirus, Coxsackie, Giardia, Borrelia, Ross River virus, Ebola, etc.) can cause a post-infectious illness. The common cold, though, is another matter. Linking that to a serious chronic illness? That’s a step people with ME/CFS, in particular, badly need the public and the medical system to get.

They’re not there yet. A sentence in a recent Guardian article covering a UK study that compared the effects of coronavirus and other infections suggested that

“The findings suggest there may be long-lasting health impacts after non-Covid acute respiratory infections such as colds, influenza, or pneumonia, that have been going unrecognised.”

Long COVID – a Uniquely Bad Post-Infectious Illness or Something Else?

It’s compounded by the fact that some people – in the medical community and without – still believe that the coronavirus and long COVID are uniquely bad – a belief could lead some to discount the seriousness of other post-infectious illnesses.

I don’t know if words were put into Timothy Henrich’s mouth, but the NYTimes article the UCSF virologist and long-COVID researcher was quoted in suggested that he believes that the coronavirus produces both uniquely severe and long-lasting cases of post-infectious illnesses.

“Like Epstein-Barr virus, dengue and H.I.V. are thought to cause autoimmunity in some people. Still, Covid seems to foment a long-term reaction that is distinct, said Dr. Timothy Henrich, a virologist at the University of California, San Francisco. “There’s something specific about SARS-CoV-2 that seems to set it apart, in terms of the severity and duration,” he said, referring to the coronavirus.

It is mystifying why Henrich, only a couple of years after long COVID showed up on the scene, would say anything about the duration of long COVID, let alone that it’s producing longer-lasting effects. Perhaps he’s just ignorant of the long, long haulers that permeate the ME/CFS community.

The coronavirus may very well have more adverse effects over time than other respiratory viruses, but the study of the long-term effects of viruses is in its infancy. No one has ever followed the course of infectious mononucleosis (Epstein-Barr virus) or pneumonia viruses over long periods. One of the few studies that tracked the effects of a Giardia infection found that a pretty meaty subset of patients were still greatly affected 10 years later. That’s some long-term stuff there.

Study Shows That Fibromyalgia is a Post-infectious Disease Too

Enteroviruses – one cause of the common cold – have long been putatively linked to ME/CFS. Even though they may be common triggers, very little research has been done on them.

Did The ME/CFS Field Give Up Too Early on Enteroviruses?

Plus, a coronavirus called the human coronavirus NL63 (HCoV-NL63) that produces the common cold usually produces mild symptoms but can put people into intensive care and “provokes an eerily similar immune response to the SARS-CoV-2 coronavirus that causes long COVID.

Other viruses can be just as deadly as the SARS-CoV-2 virus as well. It doesn’t matter, for instance, if you have the coronavirus, the RSV virus, or influenza, once you get into the hospital if you have any of these, you have a similar mortality rate. Would it stand to reason that the long-term effects of each were similar?

Tracking the after-effects of infections would reveal much.

Researchers rarely track the after-effects of infections. What would they find if they did?

The problem is that we don’t know – we don’t typically track the effects of infections. One paper on the long-term effects of pneumonia, for instance, concluded that “hospitalization for pneumonia is associated with higher long-term mortality than for many other major medical conditions”, but noted that studies are rarely done. The studies that have tracked children who came down with pneumonia are, in light of what we know about the coronavirus, incomplete – they only looked for evidence of respiratory illnesses.

The bottom line is that without the proper studies, there’s not that much we can say about the effects of cold viruses and other pathogens.

There’s no indication that I can see that the non-hospitalized ME/CFS-like group of long-COVID patients that Henrich appears mostly to be studying is more severely affected than people with ME/CFS – and the opposite may be true. The long-COVID community has not yet, so far as I can tell, embraced the 25% idea – that about 25% of long COVID patients are home or bedbound.

Backlash

Henrich is doing great work. Everyone with long COVID and/or ME/CFS is so lucky that he, Peluso, Deeks, and the others at UCSF have so fully embraced long COVID. They are leaders in the field of long COVID. They would better help the rest of us – and I would argue themselves and their work – though, by emphasizing the similarities between these conditions.

Stop

Some people with long COVID are drawing the line at being associated with ME/CFS. Some researchers aren’t helping.

It would also help at a time when NIH funding for ME/CFS has dropped and some long-COVID patients head for the exit anytime ME/CFS is mentioned. ME/CFS was welcomed at first for the support it could give, but once people saw what ME/CFS patients were up against, some began to back away. I was told that Akiko Iwasaki has gotten torched in some long-COVID patient quarters for including diseases like ME/CFS in her talks and papers.

The backlash is understandable – people with long COVID are desperate and some people don’t want to be associated with a controversial diagnosis that they believe might get in the way of getting help.

That’s why studies that demonstrate that long COVID is one part – a significant part, for sure – of a larger group of post-infectious diseases are crucial. The long-COVID field is being built, but the field of post-infectious illnesses is not.

Money is not flowing into ME/CFS, POTS, irritable bowel syndrome, or post-treatment Lyme disease. Quite the contrary; NIH funding for ME/CFS dropped about 20% this year. This may just be a blip, but even so, it’s rather astonishing to see at the time one would think researchers would be embracing this disease.

This is why comparing the long-term effects of the coronavirus to those produced by other pathogens – even such seemingly innocuous pathogens as the common cold – are so important. We haven’t had many but just got one.

THE GIST

  • A new phrase -“long cold” – recently entered the medical lexicon. A “long cold” is what you have if you fail to recover from an ordinary respiratory virus.
  • While common colds are common triggers of ME/CFS, the medical world seems to be having trouble coming to grips with the fact that something so innocuous can trigger a long-lasting and severe chronic illness.
  • A prominent virologist studying long COVID, for instance, said he believes that the coronavirus produces uniquely severe and long-lasting cases of long COVID.
  • Because we don’t track the long-term effects of pathogens we just don’t know. We don’t even regularly track, for instance, what happens to people with pneumonia even though the evidence points to long-lasting effects for some. Those studies that have tracked children are incomplete: they’ve focused solely on respiratory illnesses.
  • A recent study that compared long COVID patients with people who had “long colds”; i.e. had trouble recovering from the common cold, found that except for increased problems with smell, taste, and dizziness in the post-COVID group, the two groups were essentially the same.
  • That didn’t stop some researchers, though, from proclaiming that “Long colds are nothing like long COVID. We’ve been studying COVID very hard, and the seriousness of long COVID is a whole different order of magnitude,”
  • One wonders if that researcher would be so sure of that if he knew of the 25% group of ME/CFS patients believed to be home or bedbound, or the Komaroff study which found that people with ME/CFS were significantly more functionally impaired than people with heart disease or multiple sclerosis.
  • The media articles on the study had trouble acknowledging the potential severity of “long colds” and tended to suggest that people with long colds would slowly heal.
  • Now that long COVID is known to be a real thing, though, investigating the long-term effects of common colds, is a logical next step for researchers, a necessary step for ME/CFS and for building the field of post-infectious illnesses

The Study

In “Long-term symptom profiles after COVID-19 vs other acute respiratory infections: an analysis of data from a population-based observational study (COVIDENCE UK)“, UK researchers used a survey to compare the symptoms caused by a coronavirus infection to those produced by unidentified respiratory infection in almost 11,000 people.

The study asked about the following symptoms over 12 weeks.

“coughing, problems with sleep, memory problems, difficulty concentrating, muscle or joint pain, problems with sense of taste or smell, diarrhoea, stomach problems (abdominal pains), changes to voice, hair loss, unusual racing of the heart, lightheadedness or dizziness, unusual sweating, breathlessness, anxiety or depression, and fatigue.”

Post-exertional malaise was not there, but fatigue, brain fog, muscle/joint pain, sleep, and lightheadedness/dizziness were. They also asked about depression/anxiety and “health-related quality of life” (HRQoL).

Results

Except for increased problems with smell, taste, and dizziness in the post-COVID group, the results were essentially identical. The takeaway – so far as this study could tell – is that 3 months after getting sick, people with “long colds” looked very much like people with “long COVID”. The authors concluded:

“Our findings suggest that there may be long-lasting health impacts from other respiratory infections that are going unrecognized.”

Note that two things are unrecognized – the long-term effects of common respiratory infections and the pathogen that caused them. Indeed, the authors stated that one of the limitations of the study was:

“We do not have details on the type of respiratory infections experienced by our participants reporting non-COVID-19 ARIs, as these are not routinely tested for in the community, preventing us from determining which ARIs are most likely to cause long-term symptoms.”

If enough attention is given to the findings of this study, you can see how things could unfold. People come to the doctor or hospital with a respiratory infection, get tested, and then followed up. As we learn which immune profiles and which bugs produce the most long-term effects, we start to better understand what’s going on.

Pushback

The study was weakened by the fact that it relied on COVID tests which are only about 80% accurate, meaning that some people in the “long cold” cohort surely had been infected by the coronavirus.

That was enough for Timothy Russo, an infectious diseases expert at the University of Buffalo Jacobs School of Medicine and Biomedical Sciences, to discard the result of the study – and display his ignorance of post-infectious disease:

“Long colds” he said are nothing like long COVID. “We’ve been studying COVID very hard, and the seriousness of long COVID is a whole different order of magnitude,”

Russo didn’t explain why the increased incidence of smell and taste problems showed up in the long COVID cohort but not in what he called the “polluted” common cold cohort.

If you’ve been around ME/CFS even for a little while, Russo’s statement that “long colds are nothing like long COVID” seems pretty insane. One wonders if Russo would say the same if he knew of the 25% group of ME/CFS patients believed to be home or bedbound, or the Komaroff study which found that people with ME/CFS were significantly more functionally impaired than people with heart disease or multiple sclerosis.

Or maybe he learned about people who can’t tolerate light or sound? I’ll bet that if Russo ventured into the world of really severe ME/CFS, he would be shocked by what he saw – and he might take back that statement.

What is Whitney Dafoe’s Extremely Severe ME/CFS Story Telling Us?

As Alice Kennedy noted in her Health Rising blog, words matter. Every article I read on this study thankfully led with the fact that post-infectious illnesses are not new, but then there was another researcher, Peter Openshaw of Imperial College London, stating, whether he meant to or not, that the study was simply picking up a “slow return to normality”.

“The study is important in showing that recovery from an acute respiratory infection may be slow regardless of cause, that people should expect a slow return to normality and not expect to immediately return to full activities.”

An MSN article followed up a discussion of “long colds” by recommending that people with “long colds” see a doctor who “may recommend over-the-counter or prescription medications that can make you more comfortable as you heal.”

Many people still have trouble getting the fact that a common cold virus can cause a long-lasting disease. This study, which has gotten some press, is hopefully only a first look at the long-term effects of the common cold and other pathogens. It’s only logical, after all, that once long COVID gets established, researchers begin examining other pathogens.

That’s one of the steps needed for the field of post-infectious illnesses to emerge. Others would be post-infectious journals, conferences, professional groups, and ultimately, as Solve M.E. is working towards – an NIH institute of post-infectious illnesses. People with long COVID may be legitimately worried that being linked to controversial diseases like ME/CFS may hinder them, but ultimately long COVID will be on firmer footing if it’s seen to be one of many other post-infectious illnesses.

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