“This pandemic shone a very, very good light on the idea that there is really an intimate connection between infections and chronic disease. It was really hardwired into our medical training as doctors that most infections, when people get over the hump of the acute phase of the disease, it’s all behind them. I think long COVID has humbled us in many, many ways, but chief among those is the realization — the stark realization — that infections can cause chronic disease.”
“Looking at only acute illness from COVID is really only looking at the tip of the iceberg. Beneath that tip of the iceberg lies this hidden toll of disease that we don’t really talk about that much.”
Ziyad Al-Aly, chief of research at the VA St. Louis Healthcare System and clinical epidemiologist at Washington University in St. Louis
On the face of it, it doesn’t make sense. Once you get infected by a pathogen, your body should be better prepared to deal with it the next time it comes around. After all, now you have all these memory immune cells ready to alert the immune system to pounce on the invader and quickly wipe it out. Except it doesn’t appear to be working that way for many people. Instead of being better at fighting off the invader, they’re getting more hammered by it the second (or third or fourth) time around.
After an initial infection, our immune system should be primed to more effectively fight off a re-infection. That doesn’t appear to be happening with COVID.
Thus far, the study evidence is limited, but that’s the direction it’s pointing at and Ziyad Al-Aly’s Veteran’s Administration studies have been leading the way. While they focus more on a male, older, and not-as-healthy population they are large and rigorous and have made it into some of the top scientific journals in the world. His latest study, “Postacute sequelae of COVID-19 at 2 years“, found that the more times a person had been infected by the coronavirus, the worse off they tended to be.
Al-Aly spelled out his conclusions in a recent interview with Stat News:
“If you’ve had Covid previously and dodged a bullet and did not get long Covid the first time around and you’re getting another infection now, you’re pretty much trying your luck again. If you had long Covid before, upon reinfection there is a risk of worsening problems. You may have had brain fog and fatigue but not dysautonomia or other manifestations.”
Al-Aly’s findings were recently buttressed by a RECOVER preprint, “SARS-CoV-2 Reinfection is Preceded by Unique Biomarkers and Related to Initial Infection Timing and Severity: an N3C RECOVER EHR-Based Cohort Study“. This study, which focused on a younger and healthier population with more females, found that most of the people who were severely affected by the second infection had had a mild initial infection and that getting infected again was associated with an elevated risk of coming down with long COVID. (Note, though, that it’s also possible that doctors are assigning long-COVID diagnoses more).
A Liver Aside – Interestingly, given recent indications that the liver may play a role in ME/CFS, the study found that lower levels of albumin – a factor produced by the liver – were associated with reinfection. Albumin, interestingly, prevents fluid from leaking out of the blood vessels and leaky blood vessels could be contributing to the low blood volumes and low preload found in ME/CFS and long COVID.
While these are long COVID studies, they suggest that the more times a person gets exposed to pathogens, the more likely they may be to come down with a post-viral illness or have their post-viral illness worsen.
The tendency to get re-infected; i.e. have a noticeable COVID-19 re-infection, or simply come down with more colds, suggests that an immune hole that predisposes one to long COVID, or ME/CFS, or other post-infectious diseases, may be present. Distinguishing that hole is a major goal of long-COVID research.
These findings, of course, also suggest that our population, in particular, should be as rigorous as ever about wearing masks as the most high-risk time of the year – the winter – is upon us.
Health Rising’s Re-Infection Poll
(We don’t know that everyone with ME/CFS has a post-infectious illness but given the findings indicating that people can get long COVID without ever experiencing a COVID-19 infection, for the purpose of this blog and others, I’m going to assume that everyone with ME/CFS has a post-infectious illness.)
Health Rising’s Re-Infection Poll builds on the findings thus far, to ask if the tendency to have more or less colds has any effect on these diseases. Do people who get these diseases tend to have more colds than usual prior to becoming ill? How about after becoming ill? After getting ill, are they affected more by immune events like colds? Also, is having more colds prior to becoming ill a risk factor for having a more severe illness?
A Post-Infectious Illness Re-infection Poll
Some other interesting tweaks to the long-COVID / post-infectious disease saga have recently shown up.
THE GIST
- On the face of it, it doesn’t make sense. Once you get infected by a pathogen, your body should be better prepared to deal with it the next time it comes around, but instead of being better at fighting off the invader, people with long COVID are getting more hammered by it the second (or third or fourth) time around.
- Al-Alym a Veteran Administration epidemiologist, wrote, “If you’ve had Covid previously and dodged a bullet and did not get long Covid the first time around and you’re getting another infection now, you’re pretty much trying your luck again. If you had long Covid before, upon reinfection there is a risk of worsening problems. You may have had brain fog and fatigue but not dysautonomia or other manifestations.”
- These findings, of course, also suggest that our population, in particular, should be as rigorous as ever about wearing masks as the most high-risk time of the year – the winter – is upon us.
- Health Rising’s Re-Infection Poll builds on the findings thus far, to ask if the tendency to have more or less colds has any effect on these diseases. Do people who get these diseases tend to have more colds than usual prior to becoming ill? How about after becoming ill? After getting ill, are they affected more by immune events like colds? Also, is having more colds prior to becoming ill a risk factor for having a more severe illness? (Check it out in the blog).
- A study of over 2,000 college students found that most of the students (66%!) who developed long COVID were asymptomatic at the time they were infected; i.e. before they developed long COVID, they weren’t even aware they had been infected (!).
- Plus, a recent small study suggests that many people who are barred from participating in long-COVID clinics because they lack a positive COVID test at the time of infection nevertheless have long COVID. The study, which assessed T-cell and antibody responses to the virus, found that 41% of the patients tested had been exposed to the virus.
- These findings suggest that large numbers of people either don’t know they have long COVID and/or aren’t getting even minimal treatment for it.
The Pandemic Within the Pandemic
“Long Covid is really a pandemic within the pandemic,” Igor Koralnik, Division chief of neuroinfectious diseases and global neurology at Northwestern Medicine.
A study of over 2,000 college students found that most of the students (66%!) who developed long COVID were asymptomatic at the time they were infected. I don’t believe this kind of study has been replicated, but if validated, it indicates that many people with PEM, fatigue, sleep issues, brain fog, etc. who do not believe they had an infectious onset may have had one.
Plus, a recent small study suggests that many people who are barred from participating in long-COVID clinics or studies or have not received recognition from their doctors because they lack a positive COVID test at the time of infection nevertheless have long COVID. All it took was a bit deeper dive. The study, which assessed T-cell and antibody responses to the virus, found that 41% of the patients tested had been exposed to the virus.
Put these two factors together – an asymptomatic response to the virus that can result in long COVID – resulting in potentially hidden cases of long COVID – with the fact that many people without a positive COVID test but who have long COVID cannot get into a long-COVID clinic – uncovers a massive number of people who aren’t receiving even minimal care nor having their illness acknowledged by the medical system.
Koralnik, the author of the study, noted the distress caused by the medical system’s failure to correctly identify these people.
“They felt sometimes very disenfranchised or gaslighted even, because people told them, it’s all in your head, it’s stress, anxiety, it’s going to get better, you can do yoga and relaxation. But in fact we can show that at least 40% of this small sample were really exposed to the virus. So it would be vindicating for those people to know that one.”
Al-Aly – who with his VA studies has raised the visibility of long COVID considerably – stated that not having a diagnosis:
“doesn’t make the disease any less real. We have a crisis on our hands. But unfortunately, in a lot of ways it’s really invisible to the average person on the street, because a lot of these long Covid patients who are actually severely impacted are in bed or at home.”
Prior to getting ME/CFS almost 30 yrs ago I was an exceptionally active, Type-A perfectionist who pushed myself even when exhausted. I was described as “perky” and always smiling. I was diagnosed when I went to my dr after not getting over what I thought was the flu. I had tested positive for Epstein Barr and Mono.
My life changed. I learned to pace. I set the hospital record for passing out quickest on the tilt table. Then our family was going to spend Christmas in Mexico so I got an immuglobulin shot from our county health district. I felt normal again!! It didn’t last long. But I got another 4 or 5 before they were no longer available.
I learned to listen to my body. At times I am too exhausted to sit in a chair and visit. I have to lie down. I have suffered from extreme insomnia. For the limited hours I do sleep I have never woken up feeling refreshed. Literally everything I do is by talking myself into getting up and trying to do something in 15 min. Intervals.
If I am close to completing a task but feel wiped out, I know better than to push that extra few minutes because I’ll crash and be bed bound for days/week.
A few weeks ago I got Covid for the first time and started the Paxlovid RX. It was not that bad until the 9th day when I became very, very ill. With partially collapsed lungs and oxygen 90-91% I was in and out of the ER until I got an antibiotic. ER diagnosed me with Post Viral Syndrome which I assume is Long Covid.
Although improving I am still very weak. I fear that I will not have even the limited energy reserves that I had pre-Covid. If there is help out there, I would love to find out about it. My primary care doctor does not have ME/CFS experience.
love and solidarity to you Karen… we deserve better than this! And so do alllll these untold legions of the “newly initiated” who are just falling into the trap we fell down.
Thank you Bridgett. I thought I was just responding to a ME/CFS questionnaire – didn’t realize it was a blog. I feel Iike a whiner because everyone reading this has had their own personal struggles. But with no one in my circle of life experiencing this it is comforting to know this group understands. Warm wishes to you Bridgett.
I am glad you write your comment, Karen. Stories like yours and mine need to be told. I hope you get some relief over time.
Sorry to hear that, hopefully researchers start just trialing existing medications they have a hunch on, as I think that will fast track a treatment.
Unfortunately Long Covid researchers have been showing their ignorance reinventing the wheel by testing hypothesis that had already been disproven years earlier by ME/CFS researchers. A lot of money was wasted by Long Covid researchers not reading the existing ME/CFS literature
Question, Do you know the name of the immuglobulin shots?
Also, How soon after you first noticed the symptoms of Covid until you were able to get your hands on Paxlovid?
My county health records only say “Ig”. I think maybe “IVIg”. When they were no longer available for travel, the county health district was still giving them to people who ate at restaurants with reports of Ecoli. So if I heard on the news that if anyone ate at a specific Jack in the Box for example to report to the Health District, I said I ate there and got the shot. It gave me my life back – temporarily.
While on a cruise the first day I felt sick I tested positive with a home test so I reported it to Medical Services and asked for Paxlovid. I got it the same day.
I forgot to add that I asked for the Paxlovid RX the first day of Covid when my symptoms were sneezing, coughing and fatigue but not all that bad. I thought the RX would help me recover more quickly and prevent Long Covid. Instead by the time I finished the prescription I was suddenly much worse.
This was my experience with starting Paxlovid about 22 hours after my first symptoms. Yet, my husband who does not have ME didn’t start Paxlovid till Day 3 or 4 of his symptoms, and after appearing to suppress Covid, 2 days later Covid rebounded for him too.
paxlovid needs to be given for at least 10 days, not 5 as it is wrongly prescribed.
Ouch, Karen – now COVID. Thanks for sharing your story – and providing a warning. Three years after the pandemic started it is still taking people down. Glad to hear you are improving….hopefully that will continue!
It was good to hear about the immunoglobulin results as that is being pursued in long COVID. There is certainly some evidence that they can help in the right ME/CFS patient – we just have to identify who they are!
Keep an eye out on Health Rising – very, very interesting Long COVID case reports just popped up. A blog is coming up 🙂
Karen you actually are in a good place to gain knowledge of how to help yourself. Review “back issues” of Cort’s blogs, bits at a time. I have done this for years using just my iPhone. It’s an education.
If I had just one suggestion, it would be for you to look into getting Metformin for its effect on energy production and is something your PCP could prescribe. Inflammation deactivates AMPK, a substance that tells your body to make energy. Non-diabetics can take Metformin, which activates AMPK.
Wikipedia actually has a pretty good explanation of the metabolic process and AMPK.
Thank you so much, Laura! I watched a podcast about different treatments. Metformin was mentioned as an option to take with Paxlovid when diagnosed with Covid so I assumed since I was Covid positive two weeks ago that it’s too late. I have an appt coming up so I will definitely ask my dr about this. I will also review the back issues you suggested. Just having hope is tremendous help!! Bless you!
Thank you for encouraging me to ask my Primary Care Physician for a Metformin prescription. I am not good at locating the back issues of Cort’s post so any direction would be greatly appreciated.. And in Dr Arseneau’s list of medicines Metformin is not included. I would like to follow those who are taking Metformin to read about their experiences to give me hope that I will also see improvement in energy. Thanks again!
I have a similar make up and experience as you. I’ve had ME/CFS for decades. In 2021 I got COVID, which turned to Long COVID and added new symptom. MCAS was one of them. I could no longer get over the “hump” of getting better and back to my baseline. I wound up doing a great deal of research on Lifewave patches — reading the clinical studies, determining the body systems they work on. They don’t put anything in the body, but cause the body to heal itself. It’s truly amazing technology. I am better now and starting to get back to having a life. Not many people with our illnesses know about them, so I wanted to mention a possible ticket to health for you.
Thank you Kim for sharing your experience and suggestion. I read about MCAS which mentioned heightened sensitivity to light and sound. Mine also includes temperature.
I am curious to hear more about the results you have experienced with the Lifewave patches. How long have you used them, what difference do you notice and did you get them from Amazon? Thanks in advance and best wishes to you!
Karen, sometimes one element in another person’s story helps to understand some part and find some relief. or not feel lonely. You and we are certainly not whiners.
That’s awful. I got covid last year and was pretty unwell. I ended up with a long covid like experience for months afterwards, it seemed to behave differently to my ME, it was more unpredictable, pacing helped less, and I kept crashing all over the place, I felt super ropey. I had the covid vaccine later in the year, and a month or so later I started to improve (the vaccine gives me a worse 4 week period initially every time so it was afyer that). I don’t know if that timing was a fluke, just coincidence, it could be, but I also wonder whether the vaccine helped, some people have said the same.
It’s a balance though as some others have also said the vaccine has made them worse. But I’d had ones before that so felt like it would be ok, and was scared of getting covid again.
I hope they find some answers for us soon. It’s a sucky ride.
Paxlovid should be given for a minimum of 10 days, not 5 as it is wrongly prescribed.
My experience of CFS was triggered by a fungal lung infection preceeded by multiple chemical poisonings since infancy. The environmental chemical insults are on-going – unlikely to vanish during my lifetime – support the unrelenting exhaustion.
The number of colds I have experienced in my life numbers 0.
The 2 times I have endured flu was each time after a vaccination (1962 & 1963), therefore I have declined vaccinations since then – for obvious reasons. Perhaps my genetics are unfriendly to corona viruses (colds and flu and COVID) – as some studies suggest – although I have not yet checked my genome for the resistance.
Another pathway – chemical poisonings that presumably weakened your system until a fungal lung infection – apparently took your system down. My pathway was different – ME/CFS in the late 1970’s/early 1980’s not apparently triggered by anything (but now who knows) followed by chemical sensitivities in the 1990’s which really complicated everything then -and does to this day – to a lesser but still very significant extent.
What my MCS symptoms have in common is what I believe is an autonomic hit. Otherwise they are very different.
Wow, you have suffered with this even longer than I have. I watched a podcast by a dr who has studied ME/CFS for years. He regrets when they named the disease that they came up with Chronic Fatigue. I agree. If I ever shared my limitations are due to CFS, I often heard, “yeah, we’re all tired!” Kind of comments.
My infectious disease from pet birds was diagnosed 1969 government laboratory Brisbane – I was 18 years old. A few blood tests and antibiotics as the cure – I did not fully recover and remained on periodic antibiotics for 13 years with debilitating influenza 3 or 4 times a year. Finally told CFS was the cause (1989) then Amino acid profile Newcastle University, Dr Neil McGregor – He told me my results conclusive as caused by a pathogen – tested positive – Chlamydia pneumonia but the test is not species specific and PCR not reliable. Tropical diseases MD then tested by ARM lab Germany – result 4 stars with other co-infections – treatment My book “Beyond the Birdcage: Inconvenient Truths about Myalgic Encephalomyelitis” is now on Amazon – LA County General Hospital (1934) outbreak – birds play a role 1955 but ignored by CDC even though Chlamydia psittaci is listed next to anthrax in the NIAID to this very day. Cort the book is extensive with the history of ME and CFS as different histories – hope I can be of help for more understanding because people do not have to remain sick
Thanks, Jennifer – great title! I will get the book. Just on the surface, it reminds me of Mima’s story on Lives Interrupted “From Heroine to Invalid”. Mima came down with a series of animal-borne infections while responding to a crime scene involving hundreds of diseased animals. The results were devastating.
https://www.healthrising.org/?bm-li-story=heroine-to-invalid
(I hope you will consider putting your story on Lives Interrupted)
TY for your comments Jennifer. I found them interesting, as I had a pet green Amazon parrot that was brought from Trinidad (in the 1950’s before quarantines and import restrictions). I had this bird from (my) age 15 (in 1970), until many years after my CFS/Fibro symptoms became clinical (in 1986 when I was 30). In addition, the bird vomited fairly regularly. I took him (her?) to a local vet who did a stomach swab in the 1980’s, but did not identify any pathogens from the swab. I always wondered about the slim possibility that this bird may have been carrying a pathogen that infected me, but never strongly suspected that this may have been a trigger for me, as there were several other potential triggers (for me) that I considered more likely.
These studies need to address the issue of the Covid Vaccines. Hard to figure out what’s what with Long Covid when most people received them, and vaccination status of study participants is not included.
Dr. Peter McCullough, for example, mentions 70% of “Long Covid” being actually due to the vaccines, and the issue of vaccine injury being “whitewashed as Long Covid.”
https://petermcculloughmd.substack.com/p/tensions-rise-in-arizona-capital
Thanks for asking about vaccination (question 4 of your poll about an “immune event”), but this needs to be separated from infection. The possibly harmful “immune event” of a vaccination is its own beast requiring dedicated attention.
Good studies are actually underway assessing the effects of vaccinations on long COVID. I would bet that McCullough is overstating the case but there’s no doubt that vaccinations are causing long COVID in some and are beating up some ME/CFS patients.
On the other hand, several studies have found vaccinations to be protective against long COVID – it just depends on what kind of immune system you have.
We now know that the vaccine can potentially reactivate previous illness and pathogens in some folks , including viral infections. This is another confounding factor in this expanding story.
My long covid, resulting from a severe 3 week bout with covid almost 4 years ago before the vaccine was available, has stabilized. I have focussed on finding many ways to maximize the health of my immune system vs having the vaccines or boosters to prevent any possible reactivation of my several previous viral infections. I have not had a viral occurrence or reactivation in almost 4 years- I’m one of the lucky ones, with loss of smell and some manageable fatigue ( pacing is essential) as my residual symptoms. I believe I have natural immunity, and am one of the lucky ones.
Yes, vaccines are another confounding factor in two ways: they can both cause long COVID and help prevent it! Talk about a complex situation. Vaccine studies are thankfully underway
https://www.healthrising.org/blog/2023/08/01/long-vax-coronavirus-vaccine-injury-inroads-medical-community/
Glad to hear that you’ve done so well. Hopefully your remaining symptoms will die off over time. 🙂
Our study found no strong evidence to suggest that vaccination improves symptoms Symptoms of post-acute sequelae of COVID-19 (PASC)
https://pubmed.ncbi.nlm.nih.gov/35725782/
I have had ME/CFS for 37 yrs. Have FIBROMYALGIA, HYPOTHYROIDISM, DIABETES 2, and some other stuff. Pain is not an issue at present. I am on Pregabalin 75mg twice daily. Thinking of decreasing to see if I can manage on 1/day. My fatigue got severely worse this last winter/spring. Could barely get body to function let alone do much else. I seemed to suffer more with sinus headaches but I didn’t feel like I had a cold. I have been taking NAC/L-Glycine, 1000mg Benfotiamine, 2 Mag Glycinate in morning and 2Mag Citrate after dinner. Also Methy B and ALA. I seem to be a bit better but it appears to me to only be “running “ my body functions but not translating to more physical ability. It is early days in the treatment so still hopeful of more progress. Diabetes is a problem with all this happening. Cannot manage diet and more scary slipped into cake cravings. Tried to fix by pushing myself to cook low carb flour and monkfruit sugar cakes but pretty unsuccessful. Actually stressed myself out more by doing it. No help for diabetic meals in Western Australia and Aged care whilst giving money doesn’t let me spend where it helps. Governments. Ho hum!!
Hellene BURLING (no mummy to make me chicken soup)
An option for replies should include “haven’t had a cold since this started” which is what I experience. My first dose – 2004 – 2012 and my present one 2014 to date have both had this characteristic. And I know I’m not alone.
Pertaining to number of colds since getting MECFS- I’m around few people now since I can no longer work (and since 2020 masking in public), so I’ve had less chance of catching anything (so hard to say if my body is not catching the illness or if I’m just not exposed). Also I am able to sleep if I do feel off- It’s hard to tell between flu like crashes and actually being sick.
Isolation is a big confounding factor which is why I added the “if you get a cold, how does it go”? question.
Thanks for this post, Cort. I’m going to boost it today/tomorrow in my Substack newsletter.
I just wanted to say that the reason I think I haven’t gotten more colds/infections in the three plus years I’ve had long COVID and ME/CFS is because I work very hard at protecting myself. I mostly only go out to medical appointments or to the pharmacy. I mask everywhere still. On occasion, I meet a friend in a restaurant but always at off-peak times and seated away from others if possible. I bet you a lot of the folks who answered no to this poll question are doing the same as me.
I’d also add that, although I’m not getting infected a lot, I am having a ton of strange sensitivities I never had before. Corticosteroids give me flushing and vertigo for weeks now. A numbing spray used by my orthopedist gave me a crazy rash that’s going on two weeks now. Unlike most with MCAS for whom cromolyn sodium works well, it made me violently ill. And either IVIG or nattokinase threw me HARD into perimenopause- hot flashes multiple times an hour all day and all night (I started them at the same time so I don’t know which one did it, but my money’s on the natto because it’s soy). Our bodies seem hyper-reactive now. A recent trip to the dentist had me needing five numbing injections for one procedure. None of this stuff was happening to me in the before times.
True for me, too: I mask so much since 2020 it’s hard to tell how vulnerable I really am.
What a catalog of strange reactions – and what a mystery that problem is! I suppose it could be – as Jarred Younger proposed – the microglial or mast cells or ? reacting to all sorts of things. Why they pick the ones they do is a mystery.
Hi Amy
I have MCAS as well, and I can’t take nattokinase. One, because it’s soy, and two because it is fermented. Really made me sick. Now I take serrapeptase and it works for me. I take two in the am on an empty stomach half an hour before breakfast.
Also I find that cromolyn sodium does nothing for me. My mast cells degranulate the same with it or without it.
LDN, quercetin, luteolin and methylene blue also work.
I am progressively getting worse since my diagnosis of ME/CFS in 2007. Back then I had septicemia and was quite ill.
I had Covid mildly last year, barely noticeable since I generally have symptoms of headaches, malaise, fatigue and so on.
Just this summer I acquired Lyme Disease and got Lyme Meningitis, (yes I am going things backwards). I live in a tick infested area now and actually have had multiple tick bites the last few months.
I now am worse than ever. I don’t think it is due to Lyme itself. I was diagnosed in the hospital and prescribed 3 weeks of Doxycycline. I think the assault to my immune system has made my ME/CFS worse, as did Covid before.
Regarding colds, I didn’t get many before or since having ME/CFS. I do notice though that I will have a crash and feel particularly bad for a few days and then my husband will develop a cold. I think I fight them off but feel awful doing so.
I think the question “Once you have a post-infectious illness, are you more vulnerable to future immune events such as infections or vaccinations?” is too general: I put a “Yes” only because I have Covid postVac, but I simply don’t know if it applies to other vaccinations, and I do not think it applies to infections for me.
I did not have more colds than average, but I always tended to FEEL cold easily and immediately get a strong flu-like feeling in drafty rooms or when not sleeping enough. I don’t feel cold as often nowadays, though I am still particularly sensitive to cold around the throat.
If you’d ask me if something was different for me in terms of infections, I’d say: As an adult, I never have fever. And, in particular in the earlier years of my gradual onset of ME/CFS, I’d say I seldom have an infection of the type “awfully sick” (apart from stomach bugs), but for airways infections it would rather be that I’d feel very cold and flu-like for a bit without the infection really breaking out, or frequently feeling like having low-key infection, also getting a sore throat very quickly when singing or reading aloud.
I remember that once someone in a self-help group supposed there were 2 types of ME/CFS patients: those very vulnerable to infections, and those where infections smolder rather than truly break out. By the way, reminds me of some theory by Bhuphesh Prusty that – if I remember correctly – herpes viruses could sometimes suppress other infections.
A good friend however who is very healthy never has fever too.
I did fine with a tetanus shot last year.
I have not had a cold or flu since having Covid in March 2020 followed by long Covid, but that is probably due to masking in public indoor spaces (still) and much reduced social life. I’m just not that exposed to germs anymore. I still get vaccinated but I don’t think that has much to do with it. Virtually all of my much reduced social life is outdoors, over zoom or by phone.
It’s am interesting poll. I think it would also be good to capture whether susceptibility changes through the course of illness. In the early stages I caught everything, but later on stopped catching things (this started prior to masking etc for covid). I read somewhere that immune exhaustion kicks in after about 3 years and this can affect our response to pathogens (can’t remember where I saw that).
I’ve had 30 years of ME (POTS, EDS, MCAS). There is definitely something weird going on with the immune system. I just don’t get colds and flu any more. Streaming eyes & nose with sneezes & temperature are features of the 1989s for me.
I don’t believe whether I am in contact with people or not causes this. I went through a full-time three-year graduate program, in contact with hundreds of students and training in hospitals without a sniffle whilst everyone around me was laid out with repeated waves of horrible cold/flu infections. I did collapse (without recovery) however, when I had to take the mandatory hep B vaccination.
Blood tests show I have been picking up new viruses every few years, without realising: EBV, CMV, CPN, Coxsackie, one of the HHVs etc And I was debilitated for years with Lyme & Babesia. I also contracted typhoid, despite the vaccination.
So I seem to get very sick from vaccinations and bacterial infections that are difficult to shift, but when viral infections are present I do not produce symptoms. Any clues there I wonder?
Ooops! I meant “1980s”
My Immunologist ordered specialized phenotype testing which confirmed I have low memory B cells. It’s likely the reason why I always got sick at the drop of a hat. If anything was going around, I caught it. As a young adult, I used to always joke about having a crappy immune system. I always seemed to get run down whenever under a lot of stress or if I pushed myself physically. I literally could not do an hour of aerobic exercise without getting sick a few days later. I never understood why. Also, prior to becoming ill with ME, whenever I travelled by plane, I almost always returned home with a cold. I’d say my immune system definitely played a major role in developing this dreadful disease.
Many people develop multiple chemical sensitivities and allergies. After developing ME/CFS I had frequent respiratory Illnesses usually due to leaf mold in the fall and spring. I didn’t have flu or a common cold.
With regard to having fewer colds since developing a Long Covid type illness, I have to point out I spend far less time in the company of people. I now work from home full time and I don’t socialise. Going to work was via public transport and at work I dealt with many people in an office of over 1000 people. I am simply not exposed to as many viruses.
“After you came down with ME/CFS, long COVID or another post-infectious illness”
Wouldnt we tend to be in the Less colds etc category . Meaning as in my case ,were not able to get out ,do all we could beforehand ,so lot less chance of interacting with
ppl carrying something infectous’
Its a bit like what happened here in NZ when covid started and we put NZ into full lockdown and forced mask wearing etc
Our Winter Flu season saw 97 percent less deaths reported that yr (think we averaged 1800 a yr so 1750 plus ppl not dying that yr because the Flu was almost non existant …borders closed masks and sensible lockdown laws in place
Ill since 2008 and I can’t say I’ve been more ill with colds than before. But it seems I do get more uncommon infections, instead of the ‘day-to-day’ ones like common cold.
Despite rigorlously masking up I’ve had COVID at least 4 times (with 1 time after covid vaccination), ranging from a bad and long lasting cold to almost ending up in hospital with pneumonia.
I’ve had pityriasis versicolor.
I regularly spot tinea rosea spots (HHV6?)
I’m currently most likely dealing with an RSV infection, not with upper respiratory tract symptoms, but with uncomfortable dyspnoe and chest thightness (no sure if those are primary lower respiratory tract symptoms or secondary to a rhino- or sinobronchial reflex (things improved after sinus acupuncture)).
Every 4-6 months I get cold sores but they do not develop into full blown vesicules, they disappear before that.
And fortuntately I’ve been able to prevent ocular shingles twice.
Wondering what the roll of memory cells is in all of this.
It’s as if the more common infections are stopped in time, while the more uncommon ones get the chance to pop up (usually when severe PEM is present of course).
Wondering whether having dealt with numerous PEMs has made me less aware of symptoms of common colds or if pacing/resting in an attempt to prevent PEMs has been beneficial in stopping common colds developing.
Wondering a lot 😉
I am very interested in knowing how many people reading this blog have been tested for HHV6 A (not HHV6 B the common cause of childhood roseola). The Quest test does not parse out HHV6 A cases. You have to have tests for HHV6 A at a specialty lab like the one affiliated with the HHV6 Foundation.
This virus was discovered in the Gallo AIDS lab in 1986. Originally the researchers found it was killing B cells so they named it HBLV (Human B Lymphotrophic Virus). Then they discovered it was also killing T cells so they renamed it HHV6 and subsequently (and for who knows what reason) divided it in to HHV6 A and B. HHV6 B is now found in at least 90% of the population, but know one knows the prevalence of HHV6 A.
Both HHV6 A and B along with EBV, CMV, HHV6 7, the chicken pox virus, HHV 1 & 2 are in the herpes family, meaning once you get them they live in your cells forever and do harm. If something, however, suppresses your immune system like chemotherapy; medicine to prevent transplant rejection; HIV; Covid; toxic exposures like in the Gulf War; etc. one or more of these viruses can reactivate causing havoc.
For a long time, I thought this was a hopeless case, but it occurred to me that the new shingles vaccine is preventing the reactivation of herpes zoster into shingles. So the possibility exists that vaccines could be developed to prevent the reactivation of other viruses in the herpes family.
Another strategy for preventing herpes reactivation is in stage III clinical trials at Baylor. https://hhv-6foundation.org/transplant-complications/virus-specific-immunotherapy-for-primary-immune-deficiencies
I apologize for the typo. It should have said, “live in your cells where they do no harm”.
Dear Cort, as someone with experience with surveys and polls and a training in statistics. I can’t honestly say that these questions fall short. There are so many variables and shortcomings in the question and answers. I would say withdraw this poll. Sorry.
Yes! Dr Al-Aly mentioned dysautonomia!
My last ng Covid type symptoms started after the Pfizer vaccination. I have never had Covid and was very healthy on no medication no medical conditions prior. Still suffering after nearly 3 years.
I was very fit exercising and 10km walks daily
“Plus, a recent small study suggests that many people who are barred from participating in long-COVID clinics or studies or have not received recognition from their doctors because they lack a positive COVID test at the time of infection nevertheless have long COVID. All it took was a bit deeper dive. The study, which assessed T-cell and antibody responses to the virus, found that 41% of the patients tested had been exposed to the virus.”
So what about the other 59% who have symptoms but no evidence of infection?? Post-Vaccine syndrome perhaps?
https://www.medrxiv.org/content/10.1101/2023.11.09.23298266v1