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.
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.
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?
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.
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.
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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This blog is also emblematic of what Health Rising does. We take the long view. It’s not just about the cause or treatments of these illnesses. In order to get to those as quickly as possible, we also need to build a field of post-infectious illnesses. Demonstrating that the common cold can cause them is an essential part of doing that and that’s why this blog was done. If these kinds of blogs support you, please support us in a way that works for you.
Researchers and patients of Long Covid could potentially learn SO MUCH from M.E.
After all, they are all Post Viral illnesses…….
And that includes, EBV, Dengie, Flu, Covid, and lots of other viruses.
It’s about time we started calling these for what they are:
“Post Viral diseases”.
I didn’t keep the first reference to post-viral illness I ran across, but folks are starting to argue about it publicly, I think. Check out this TIME article from December 2022 that summarizes some of the high points – and refers not only to the Iwasaki study but also a recent study in JAMA: https://time.com/6240058/post-viral-illnesses-common-long-covid/
I think it’s going to be a long while before we know enough to talk about similarities and differences, it’s just the LC guys aren’t sufficiently aware of what’s gone before to really have a well informed opinion of this previously denied subfield….
I always thought my initial ME was brought on by a small cold. I definitely know that stress from studying and pushing through a very bad cold made me go from being in remission (except for continuing IBS symptoms) to spiralling down to become housebound moderate-severe. 5 years later I still haven’t improved and can’t push myself without consequences. I hope someone takes the lead with this line of research.
I’m very encouraged by the work Iwasaki is doing (the principal investigator Cort mentions in the article). I feel like things are gradually building to some kind of critical mass where regular health care professionals are going to have to start taking us seriously soon….
“… a fairly significant subset of long-COVID patients run for the exits anytime ME/CFS is mentioned….”
Let me just go on the record to say this is an unhelpful statement. As is often said when writing about any patient group (and painting them with a broad brush), please talk to an actual patient from that group before you go to print.
I guess your experience is different and that’s good. I’ve heard from people that I trust and who I consider responsible that this is happening at least in some circles. I’m sure that for many people it is not true but it underscores the need, I think, for researchers to acknowledge the commonalities between these diseases.
I know there are some people on social media (esp. X) who like to stoke division just because they can. But they’re generally not taken seriously. Putrino made a good statement about this in an interview he did with David Tuller.
Thanks for that and that’s very good to hear. I don’t want to overstate and don’t want to create more divisions. I have to say that as a person with ME/CFS I’m pretty used to people being against us – maybe I fall into that trap too quickly! I apologize if I’ve offended anyone with long COVID who is supporting both illnesses.
I’ve modified that section a bit
Thank you! I know there was a rumor that if you are diagnosed with both ME and LC (like I am) there might be issues with enrolling in certain trials, since the trials might not enroll people with a dual dx. I have not experienced this and I don’t know how much truth there is to the rumor.
I too have both diagnoses, with LC coming first. I do think that in 2020-2021, there was a lot more pushback by COVID long haulers to being grouped with ME/CFS patients, mostly because the range of symptoms was (and is still) massive with LC and I’m sure long haulers were terrified about being ignored/marginalized as folks w/ME largely had been. Now that we know how similar the illnesses are, and that 50% of long haulers also have the hallmark symptoms of ME, you see much less of this pushback by long haulers.
The pushback Akiko Iwasaki is getting by some long haulers is just plain silly (I haven’t personally witnessed any of that on any of the Yale LISTEN study calls I’ve been on in the past year). Some just want to be seen as special or unique somehow. But, if it waddles and quacks, it’s probably a duck. Scientists like Iwasaki will ultimately tell us what the overlaps and differences are between these illnesses.
I heard that with regard to fibromyalgia actually. I don’t really understand it – if LC came first why the problem with another diagnosis? – but apparently its a thing.
On the heels of the news from Friday that the CDC has learned that long covid is a bigger deal than previously thought, I did a google search to see which news media outlets picked up the story.
Many did, that’s good news. But, as always, the stock photos used to accompany their stories totally undermined the message.
The photos were of decent looking young-ish people looking sleepy.
Do your own search..for “news” from “past week” and you’ll see the images.
This one image is killing us. We need to do something about it.
That is a very good point.
It drives me NUTS. Some sleepy head sitting yawning, head in hands at a computer. The charities are culpable for not challenging this and it’s the laziest of journalism!!
“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.”
So is this implying that these smell and taste problems are to some extent unique to long Covid, and not previously reported in ME/CFS?
Yes – I imagine that some people with ME/CFS do have smell and taste problems but they were really prominent in COVID-19 and are a pretty good differentiator between the two diseases.
IMHO, finding out what happens as a result of a trigger is likely to be more revealing than determining even more potential triggers.
Because it has what (for ME) is an unimaginable level of funding, Long Covid research should eventually advance understanding of how post-viral illness begins & what it is, & hopefully determine accurate biomarkers & effective treatments. Once those genies are out of the bottle the world will be very different for pwME, whatever triggered their illness and whatever some blinkered Long Covid specialists think or say!
As vaccinations do not prevent long covid but could be starting long covid as well as the virus itself. It is a trigger not a cause. Just as other infections. But i think corona is doing more harm then we think. It weakens our immune system and more. I see many people with health problems. And there is still unexplained excess mortality.
The more often you get corona and the flu combined with other infections, the greater the chance that you will develop health problems. At least that’s what I think. Because every time your immune system is activated, errors and damage can occur. This also applies to vaccination multiple times. The more often, the more active your immune system becomes, in combination with infections.
I’m saying to people who don’t need to know the details that I have long covid, as the reaction is much better than when i Say me/cfs. I wish I could just say it to my GP, maybe then I get some more help.
I’m happy you mentioned pneumonia as it’s rarely mentioned in relation to me/cfs, but I’m starting to realise that was when my health started to get worse. I recently read old reports (about 8 years old) with me returning repeatedly with related symptoms after my pneumonia for about a year. They took pictures of my lungs but never did blood analysis to see what type of pneumonia it had been.
A couple of months ago I stumbled on an article by Dr. Chia (Chronic Chlamydia pneumoniae Infection: A Treatable Cause of Chronic Fatigue Syndrome) and after that I found about the sadly defunct website cpnhelp.org that takes as the basis the work of Dr. Charles Stratton, who published on the relationship between Chlamydia pneumoniae and Multiple sclerosis, but also did (unpublished) research on CFS and Chlamydia pneumoniae https://web.archive.org/web/20230326081742/http://cpnhelp.org/chlamydiapneumoniaechronicfatigue.
Of course when I tried to explain this to my GP and showed her the research articles, she barely looked at them and said that I shouldn’t take advice from “Doctor Internet”. Instead of looking for traces of the pneumoniae, she did the typical tests for Iron and Vitamine D3.
Sorry to hear about your GP. It’s so hard to find someone to listen in mainstream medical. If you can find a GP working in a Naturopath practice they are usually more receptive to education, in my experience. Or see a ND and take their request for lab work to your GP. If they won’t fill it then report them and change DRs. We deserve proper healthcare whether they believe a disease is “real” or not!
A bit off tangent (but still in the ‘apples and oranges’ catergory) : for some reason I keep being very bothered with (the casual use) of the term “long covid”.
Very often definitions of “long covid” are not given / differ depending on who’s using them, mudding the (research) field and pooling different subsets of patients into 1 condition (we all know what CFS did for ME and ME research).
Dare I even go 1 step further?
The WHO definition of Post Covid-19 Condition, commonly known as long COVID, “is defined as the continuation or development of new symptoms 3 months after the initial SARS-CoV-2 infection, with these symptoms lasting for at least 2 months with no other explanation. ”
As a significant subset of “long covid” patients fulfill the criteria of ME there IS another explanation for them. Hence strictu sensu they are not even “long covid” patients, they are post-SARS-CoV-2 ME patients (with or without additional SARS-CoV-2 specific symptoms such as loss of smell).
(btw I don’t want to start a polemic, just had to get this of my chest)
Where would post-trauma ME/CFS fit in here?
Trauma to the body, be it from a disease, physical injury or even mental injury causes a cascade of events which release hormones, steroids, broken cells releasing their contents, etc which throws the body into chaos. Add in the little known or researched genetic variables that make each individual different and the stress of above can cause the immune system to go “off the rails”. Another huge factor, in my opinion, is the overwhelming insult to the body from the toxic stew we now live in. Getting genetic testing done by a company like Genomic Insight, which is the one I used, helped me identify several areas of weakness in my system that needed to be supported. Like a high demand for thiamine. Once I corrected that things improved a lot, but I had already cleaned up my diet (eliminating nightshades, gluten, dairy, alcohol, etc) and done a years worth of detoxing as well as taking supplements to suppress viruses and eliminate tick borne diseases. It took 6 years of work but I can stay on my feet with moderate activity for 4 hours now. I think I’ve been very lucky but hopefully there will be more help coming out of the ongoing research, and there will be a total cure soon! Blessings.
Latent virus?
https://www.ncbi.nlm.nih.gov/books/NBK8538/#:~:text=Reactivation%20of%20a%20latent%20infection,and%20physical%20stress%20or%20trauma.
Bhupesh Prusty was championing all this wasn’t he? What happened to him. He was the post viral poster boy at the long anticipated Invest in ME coonference in UK this summer. Then disappeared to be peer reviewed. How long does that take… the German Youtube video in 2022 was so compelling.
FWIW I get a cold less than once every 3 years, always have. And I can’t tell you how many ME chat friends say the same.
Colds were once bad enough for a couple of days off work, but the virus which did for me was SO much worse. Knocked me into bed permanently 11 years ago, ill health pension and low severe from the get-go.
I wonder if researchers who don’t publish in English have done research tracking what happens to patients after infections. For example, I was reading recently that a large proportion of the population in Japan has a subsidised comprehensive annual health check. Maybe researchers can use this data in combination with hospital records of acute infections, for instance.
I was also thinking of how bacteriophage research advanced behind the Iron Curtain but was dropped elsewhere. Because of the language and political separation, researchers in the “free world” did not catch on to the possibilities until much later.
I’ve noticed quite a bit of research translated from Japan, China and South Korea on dysautonomia recently. Maybe some country out there is looking into post-infectious illness but we just don’t know it.
You mention the IBS, well some say that majority of cases are actually SIBO, and the leading research there seems to indicate that its often caused by food poisoning, which leads to something called anti vinculin antibodies, and they have even narrowed it down to a few types or strains of bacteria that cause this to happen, amazing stuff but its a shame it hasn’t happened for people with ME/CFS, mold hypersensitivity, chemical sensitivities / MCS or even the more unusual EMF sensitivity, which thankfully I don’t seem to have. Also SIBO can also be caused by thiamin deficiency mediated nerve and brain dysfunction which is probably a stealth epidemic, with food quality dropping and on average more processed, and more people experiencing more stress than was usual.