Geoff’s Narration
The Blog
We’ve had chronic fatigue syndrome (ME/CFS) moments and long-COVID moments, and now we have our first post-infectious disease moment. “Moments” indicate that something significant has happened, suggesting that better times are ahead. In this case, not just for ME/CFS or long COVID but for post-infectious diseases in general.
The CDC’s ME/CFS Program is Back!
This moment was generated by the Centers for Disease Control’s ME/CFS program which is on a bit of a roll right now. (This is its second “moment” in the past year.) The program seemed to hibernate for a while. The CDC, it turned out, was working on its Multisite Clinical Assessment of ME/CFS (MCAM) project.
The study’s large network of patients and providers enhanced its robustness.
The CDC bit off a lot to chew with its Multisite project. It was one of four major, highly ambitious, and expensive projects (OMF’s Severely Ill Data project, the NIH’s Intramural study, and the Decode ME project) that took root in ME/CFS over the past ten years or so. The Multisite project has nearly been forgotten, but it involved intensely studying large numbers of ME/CFS patients as they saw a broad array of ME/CFS experts spread across the U.S.
Over the past couple of years, the publications have started to come out. There was a big exercise study suggesting that metabolic problems at the cellular level were causing strange breathing patterns.
Plus, the CDC produced a paper that greatly increased the prevalence of ME/CFS. While the CDC has rarely been a huge driver of ME/CFS research, it’s played a vital role in understanding ME/CFS prevalence and its impact. With the recent publications of several significant papers, you might say the CDC’s ME/CFS program is back.
Is ME/CFS Everywhere?
Dr. Unger moved quickly to compare the effects common pathogens and the coronavirus had on coming down with ME/CFS.
What a clever study. Then again, the “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome After SARS-CoV-2 Infection” study is right in the Centers for Disease Control’s (CDC’s) wheelhouse. The CDC, after all, is all about tracking disease. It started out as the “Communicable Disease Center“, tracking the spread of malaria in the southern U.S., and then moved on to other infectious diseases.
Now, fittingly, in the 21st century, it’s tracking post-infectious diseases. Elizabeth Unger and company (this study included researchers from UCLA, Yale, UCSF, University of Wash., University of Texas, etc.) were way ahead of the game when, back in 2020, they began assessing how often infections other than the coronavirus were causing chronic fatigue syndrome (ME/CFS).
The study was brilliantly simple. Between Dec. 2020 and Sep. 2022, it enrolled over 4,000 people with an acute infectious illness in sites scattered across the U.S. and, using tests approved by the FDA, determined if they had COVID-19.
Then they standardized questionnaires including the 2015 Institute of Medicine criteria to determine their symptoms and if they met the criteria for ME/CFS at 3, 6, 9, and 12 months. In the end, they had a post-infectious coronavirus group and a post-infectious other-pathogen group.
Results
“Our findings suggest that COVID-19 is no more likely than other acute infections to be associated with ME/CFS.” The authors.
Maybe nobody but an ME/CFS patient could have expected the results. The big bad coronavirus was no more likely to produce ME/CFS than the mystery pathogen – essentially suggesting that the common cold is every bit as effective at producing ME/CFS as the coronavirus. If anything, the people infected with the mystery pathogen might have fared worse.
Interestingly, the percentage of people remaining ill stayed pretty constant over 12 months (@2.6-3.6%); i.e. they were not getting better.
“The high symptom burden for participants meeting ME/CFS criteria persisted through 12 months in both cohorts, emphasizing the potential for a long duration of illness and disability.”
The study’s findings were strengthened by its size and its spread across 8 geographic areas. Not surprisingly, it made it into a highly-read journal – the JAMA Network journal.
You can see how these people could have been missed. The common cold (which is caused by a variety of pathogens) doesn’t get much study – most people simply get over it – and only a very small percentage of people remain ill. The problem only gets significant when you add in all the people who get colds every year. It’s exactly the kind of thing our big disease-focused medical establishment would miss. We needed a new pathogen to sweep the field to highlight the post-infectious subset.
What a turnaround for the medical establishment this is. Many people with ME/CFS know how hard it’s been to convince doctors that a simple cold could result in a disabling disease. It just didn’t compute.
New, large studies are forcing the medical profession to focus on post-infectious diseases.
The Multisite study isn’t the first to find that common infections can cause disabling symptoms. A larger (10,000 person) UK study published in Lancet, which followed people for a shorter period (1 month), found that people with undiagnosed respiratory infections had similarly high symptom burdens, and concluded that there “may be long-lasting health impacts from other respiratory infections that are going unrecognised”, and that “we must take the opportunity to investigate and consider the post-acute burden of other ARIs, to ensure all people with post-acute sequelae can access the treatment and care they deserve.”
Another confirmatory finding came from a 17-year 2023 Taiwanese study, which found that people infected with Varicella-zoster virus, mycobacterium tuberculosis, Escherichia coli, Candida, Salmonella, Staphylococcus aureus and influenza all had an increased risk of coming down with ME/CFS.
Most of these are “common pathogens” that most people quickly fight off. Varicella zoster causes chickenpox, E. coli and salmonella are common causes of diarrhea, candida is a common fungus, Staphylococcus aureus causes sinusitis.
From the groundbreaking Dubbo studies of the 1990s to the more recent fibromyalgia giardia studies, there’s ample evidence that common infections can cause an ME/CFS-like illness. Aside from Lenny Jason’s infectious mononucleosis college studies, the studies have been quite small and made little impact outside the field.
A wave of support for post-infectious diseases is building.
A Building Wave
Things are different now. Large studies that are getting published in prominent medical journals are making it impossible for the medical profession to ignore post-infectious illnesses. Ditto with a recent CDC study which found that ME/CFS is much more common than previously thought.
Post-infectious disease communities are uniting and demanding their illnesses be given equal footing.
The $10 billion / 10-year Long COVID Moonshot to vastly increase funding for long COVID, ME/CFS, POTS, and post-Lyme Disease Syndrome is the most prominent example of this – you can support that effort now. The fight for the post-infectious disease Center at the NIH suggests that a new era is coming.
The wave is building. Post-infectious diseases can be ignored no longer.
I live in BC, Canada, where it seems preferable to dump ME/CFS patients on disability benefits (which are below the poverty line) than to provide individualized medical investigation and treatment so that they can resume their formal working lives which contributed to the economy. And in other places with less of a social safety net it’s even more likey that pwME slip into serious poverty and worse.
The cost of systemically neglecting ME/CFS (and all associated post-infectious conditions which tend to fall under this umbrella) is multi-layered (ie quality of life, personal financial, economic cost, loss of active community members, impact on families, etc…). But the economic cost alone is truly gigantic and much of it goes unacknowledged. The economy, and so many other dimensions of life, will benefit greatly from the eventual societal reckoning with post-infectious chronic illness.
I was having this exact conversation with my mates here in the UK just the other day – almost verbatim. Except here, at least in the media, politicians are pushing to try and lower the benefits bill and get people back into work. Government acknowledgement of and investment in post viral conditions / LC / ME/CFS is practically zero. If they were to invest in research and treatment in these areas it would get so many people back into work and contributing to the economy. I estimate that me not being able to do my old job is costing the government approximately 27K in lost tax revenue and an additional 4 or 5k in lost VAT revenue, not to mention the cost of the benefits I receive. I would love nothing more than to get back to work and have some semblance of the life I once had.
I think it’s time to flip the dialogue and change the way that we, as a group of people suffering these conditions, are perceived – less of a liability and more of a valuable, lost asset – not only to the government coffers but to society as a whole.
Hear! Hear! Or as my Australian relatives would say: “S’truth!” 😉
Well said.I contracted Mono(Epstein Barr Virus in Oct 1,2008 and I am now just about 4 months shy of turning 65.People stignafyiny people who live with Chronic Fatigue Syndrom/MYALGIC Enceplomyolitisis.I had brain swelling for the first 5 yrs or better.My dad said why are your eyes bulging and look like their about tow pop out of the sockets.I said because I have swollen temples and brain swelling.I had beautiful white teeth that were literally disintegrating and crumbling and breaking down to the gum.Had to have all uppers and all lowers pulled.Brain fog,Sever all over Jount and muscle pain not like when you just have the flue but much worse and week limbs and my legs feel like I am carrying or wearing Cynderblock Shoes on my feet.My eyesight changed from 20/20 Vision to blured vision and sight has never corrected.My endocrinologist Dr Steven Halaz checked my EBV Antibodies and it was still 600 in 2017 and two weeks ago I asked to have another EBV Antibodies check and its still abnormally high I believe it was still 487.I still am fatigued and still have very high pain levels with breakthrough pain and I have daily right sided abdominal pain which is chronic Diverticulitisis,just had my gallblader removed and sent to a lab and they lab said it was chronic long-term and was diagnosed with UC,and Cealic Disease and 15 days latter had full knee replacement and my dad allways said growing old ain’t for sides.Also dealing with Phycological issues like Paranoid Schzophrenia which I red is also sign of Chronic Fatigue Syndrom I also called it Chronic Active Epstein Barr.The only time I could get active but still had to wait for a day when my other symptoms subsided some was when my pain management team put me on Transdermal 75 mcg Fentanyl Patch.And if I was going to try to do anything its was the first day of putting on a new patch.This patch was a 3 day patch and then you put a new one in.So they quit allowing the Fentanyl to be used and I was put on Morphine 60 mcg Extended and Low dose Oxycodone for breakthrough pain and I became more active and was able to due some of the things I used to be able to due and his was shorted lived and now back down to low dose morphine ET 10mcg for Primary Pain and low dose Oxycodone and now cant do anything.If we go anywhere I have to set in the car.Have very little to no energy for all those years except when on high dosage of pain medication.Have problems staying awake and drink approx 6 to 8 cups of coffee some days and still cant stay awake some time.I used to be able to walk into walmart and get things we need but now I drive around the parking lot to try and find and electric shopping cart.Or go in and wait till a store clerk can find one.Anyway,I try to stay as positive as I can but it sure ain’t easy.I allways worked with my hands and I miss working so much.I bet so many of you feel the the same day because we were able back then to contribute to your country.May God allow Researchers and doctors to find a cure or a better way to treat these divistating symptoms.
I guess it’s good to confirm what most people intuitively know – that all sorts of infections can trigger ME/CFS. Of course some people still think there’s a mystery virus yet to be found, or herpes viruses are reactivated…
the key now, as always, is to firmly establish causative mechanisms, which are highly likely to be chronic neuroinflammation and associated changes in the brain, triggered by that initial immune insult…
A sentence/paragraph cuts off unfinished, “Not surprisingly, it made it into a top-notch journal – the”
Thanks! My editor pointed it out to me and I missed it. It’s the JAMA Network journal.
Yes, it is. I think these kind of large studies are setting the foundation for the field of post-infectious illnesses. Good for Dr. Unger and all the people in this study for jumping on this.
And especially good timing given that Maureen Hanson just published a commentary suggesting if it aint’ an enterovirus it’s not causing ME/CFS!!
It’s a pity that you are not reading up on the results of the herpes viruses research in ME/CFS from the last couple of years. If you did you’d find out that there is just one hypothesis and more and more evidence for it around that can explain the link between an infection triggered immune defect and brain inflammation: smoldering HHV-6b reactivation.
https://www.brunel.ac.uk/research/projects/reactivation-of-herpesviruses-in-chronic-fatigue-syndrome
Why dismiss the only sound hypothesis that is around? Especially if you not even can’t offer an alternative. I really don’t get it, Matthias.
If it’s so strong and clearcut, then it should be easy to replicate….
I have made it clear for many years what I think ‘the alternative’ is, what causes and perpetuates ME/CFS – chronic neuroinflammation and related brain disturbances triggered by an immune insult, viral or otherwise
Actually, Matthias, we have the same understanding of ME/CFS. I also think there is a pathogenic change in the immune system and then inflammation (in cells of the immune system, the vessels, and) the brain.
But what’s the link?
We have more and more smart prospective studies that it has something to do with maybe EBV or more likely HHV-6b.
For me it’s 100% clear that it is herpes virus 6b because the brain inflammation I had would immediately stop everytime with acyclovir which works well against HHV-1,-2, and 6.
HHV-1 outbreaks with the typical lip local infections I’ve had all my life until I got ME/CFS. It would be somewhat weird to suspect that it would change the type of infection that it produces. HHV-2 I tested negative. Remains HHV-6.
How do you explain how a defective immune system can cause chronic episodic smoldering brain inflammation that can be stopped by resting and pacing? How do you expalin PEM? How do you explain vessel damage? How do you explain the general weakness of the immune system that has probably to do with damage to a certain type of T-killer-cells. How do you explain fatigue? How do you explain how the mitochondria are damaged by the toxic byproducts of said inflammation through something that patients with ME/CFS have in the blood?
Are you aware that all these questions can be explained by the idea of HHV-6b atypical smoldering reactive episodes and the research is ongoing and even partly has been replicated?
Do you have something better to explain all these questions?
I’m in Saskatchewan,Canada.ive been ill with ME/CFS for decades.
What really needs to happen is a national inquiry and to hold someone accountable for this decades long cover up.
I couldn’t fathom how a person could be so severely sick and get completely ignored and lied to and degraded and gaslit by all of the medical doctors I visited.i swear they must take courses on how to over power a patient.
I got laughed at by two infectious disease doctors.
Because I couldn’t get any help I just kept going to a new doctor after the last doctor pooh poohed on me….this merigoround lasted for decades until finally all hell broke loose….and boy ,did it ever….my immune system finally decided to let out a huge war inside of me.And what a war it was…and now I’m left with all this damage.
I’ve now lost all trust and faith in this broken system.
I keep thinking to myself…
Even if the researchers did find a way to reverse this, how would this all get implemented here in Canada with a health system crumbling beneath the weight of years of immigration (Im not a racist)that has been a huge contributor to the failing of the “system”
Canada is teetering and on the brink of a health care disaster.People are dying litterally in the hallways of our hospitals because wait times to see a doctor even for the most serious ill are sometimes 40 hours or more.
Yes, big money spending starting to roll out on researching this malady but I’ll bet dollars to donuts when a cure is found (which i doubt it will)(no entity has ever found a cure for any disease,only treatment)will there be big dollars spent on the roll out of front line treatment.i highly doubt it.
We,at least here in Canada,are going completely the opposite direction of what the hopes and dreams are on these forums
Giardia and fibro…yep,sounds like me.Drank well water the day I got sick October 1981 but also a date many others fell ill according to researcher Maureen Hanson
It’s a dam good thing I couldn’t have got out of bed way back when all the fireworks were going off inside of me because the infection was telling me to go downstairs to the gun cabinet and end all this severe over the top wide spread pain and suffering.
Now I ask…., who are the real SICK AND EVIL people that cover up this decades long nightmare
Oh, perhaps i forgot to mention…I seen Francis Collins on the tonight show recently stating that the clott shots are 100% effective against covid 19.
That’s completely the opposite of what a Canadian (trusted by many)doctor stated recently..,stating the stats show that people who are vaxxed faired exactly the same as the unvaxxed.
How can their be this much discrepancy
One of them must be lying
..can you guess which one?
I can.
My elderly mother and father have each been vaxxed 6 times, they each continue to get covid 19 over and over.Thats all the science and proof I need.
I agree with you there needs to be an inquiry into how ME/CFS was dismissed as hysteria and how the medical profession fell for the fraudulent PACE Trial
However I totally disagree with your false claim about immigrants being to blame for long hospital waiting lists in Canada. When in reality the problem is management and lack of collection of taxes from the very wealthy corporations not paying their fair share, as they have their parent companies set up in offshore tax havens, yet feed and syphon massive sums of money from our economy.
Lead economists have stated that unpaid tax from corporations more than covers the entire budget of social services, i.e. the health system, policing, education and sickness benefits.
What they do is make us the public think vulnerable people like immigrants are the problem, when really it’s the wealthy not paying their taxes. Please don’t be so easily fooled. The saying “Don’t look up!” comes from this situation of tricking people into looking down on a smaller issue and blaming minorities, than looking up at the far bigger greed problem above. Blaming immigrants is straight out of the wealthy’s playbook
Also when immigrants went to their home countries during the early stages of the pandemic, countries like Canada, New Zealand the UK, US Australia etc, all realised we actually needed immigrants because not many here wanted to do those jobs.
I cant believe you’re all making such a big deal about one sentence in a long and desperate plea for someone, anyone, to provide this poor man with some help.
Cort, please remove comment by Roonie. I am pretty sure it was written by using Chat GPT by a troll or right wing activist. This opinion is totally out of line and racist.
Thanks!
I agree it’s a lot of nonsense and we’ve heard it all before, but if it’s AI, it has a lot to learn about spelling and punctuation.
JANE RIGG…Shame on you, you’re name is all capps.
You’ve got a lot to learn about spelling and punctuation
😂jk
I think keep his comment up because I got the chance to fairly explain to him on how his thinking has been shaped by the mega rich to not look up at them but instead he was tricked into looking down at migrants, At least he now has information to reflect on to why he started thinking that way. And hopefully will see it’s not immigrants fault, but bad management of the health system, and the mega rich trying to distract us away from the problems they cause.
Taking down his comment removes mine and others, so he’ll go on unaware he’s incorrect in his current thinking. If he comes back with understanding, then that’s a good thing, but if he comes back with more of the same, well that’s time to remove it.
In the meantime give him and others a chance to read my counter argument and he and whoever can learn something good from it.
Being that so many signs point to a compromised immune system, how about something like one of the newer cancer drugs to reboot it…and follow up with stem cell therapy etc. Like this..
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7201056/
This process of suffocating speech has devalued truth in the public forum. Without truth there is no freedom of the press. Without freedom of the press there is no freedom. Without freedom there is no democracy.
And people that believe what they think to be true have no fear of opposing views.
Do you really want the government and social media companies to determine what is right think and what is wrong think—and then use the state’s police power to end all “wrong think?” This would be a clear First Amendment violation.
Across the country, federal, state, and local entities, as well as professional organizations (especially in the medical professions), silenced people who dared speak out against the COVID regime of masks, lockdowns, and vaccines. The greatest irony, of course, is that these silenced people were correct: None of the regime-approved COVID responses made a significant difference. Instead, COVID did what new viruses do: It mowed down the elderly and immune-compromised and made everyone else varying degrees of sick.
Roonie has his opinion and he is entitled to it as much as you are entitled to yours. The answer is not to silence him. In a democratic republic, people have the right to express what are deemed to be alleged bad ideas and inaccurate notions. Citizens then freely debate those ideas in the public square. That’s how it’s supposed to work.
Well said.I contracted Mono(Epstein Barr Virus in Oct 1,2008 and I am now just about 4 months shy of turning 65.People stignafyiny people who live with Chronic Fatigue Syndrom/MYALGIC Enceplomyolitisis.I had brain swelling for the first 5 yrs or better.My dad said why are your eyes bulging and look like their about tow pop out of the sockets.I said because I have swollen temples and brain swelling.I had beautiful white teeth that were literally disintegrating and crumbling and breaking down to the gum.Had to have all uppers and all lowers pulled.Brain fog,Sever all over Jount and muscle pain not like when you just have the flue but much worse and week limbs and my legs feel like I am carrying or wearing Cynderblock Shoes on my feet.My eyesight changed from 20/20 Vision to blured vision and sight has never corrected.My endocrinologist Dr Steven Halaz checked my EBV Antibodies and it was still 600 in 2017 and two weeks ago I asked to have another EBV Antibodies check and its still abnormally high I believe it was still 487.I still am fatigued and still have very high pain levels with breakthrough pain and I have daily right sided abdominal pain which is chronic Diverticulitisis,just had my gallblader removed and sent to a lab and they lab said it was chronic long-term and was diagnosed with UC,and Cealic Disease and 15 days latter had full knee replacement and my dad allways said growing old ain’t for sides.Also dealing with Phycological issues like Paranoid Schzophrenia which I red is also sign of Chronic Fatigue Syndrom I also called it Chronic Active Epstein Barr.The only time I could get active but still had to wait for a day when my other symptoms subsided some was when my pain management team put me on Transdermal 75 mcg Fentanyl Patch.And if I was going to try to do anything its was the first day of putting on a new patch.This patch was a 3 day patch and then you put a new one in.So they quit allowing the Fentanyl to be used and I was put on Morphine 60 mcg Extended and Low dose Oxycodone for breakthrough pain and I became more active and was able to due some of the things I used to be able to due and his was shorted lived and now back down to low dose morphine ET 10mcg for Primary Pain and low dose Oxycodone and now cant do anything.If we go anywhere I have to set in the car.Have very little to no energy for all those years except when on high dosage of pain medication.Have problems staying awake and drink approx 6 to 8 cups of coffee some days and still cant stay awake some time.I used to be able to walk into walmart and get things we need but now I drive around the parking lot to try and find and electric shopping cart.Or go in and wait till a store clerk can find one.Anyway,I try to stay as positive as I can but it sure ain’t easy.I allways worked with my hands and I miss working so much.I bet so many of you feel the the same day because we were able back then to contribute to your country.May God allow Researchers and doctors to find a cure or a better way to treat these divistating symptoms.
Also if you look at a lot of industrialized countries right now, many healthcare systems are crumbling for various reasons – the US never had a great one to begin with and ours has only gotten worse and has nothing to do with immigration. And the statements about vaccines having no effect is just plain wrong.
Hi Roonie,
Hey here’s a video by Robert Reich who thoroughly fact checks his information to make sure everything he says is correct. I checked him in the past and found he’s been spot on about immigrants.
You’ll be relieved to hear there’s been multiple studies showing immigrants have the lowest crime rates (like really low), and lower still from undocumented ones. Also the undocumented immigrants don’t take the benefits from welfare or the healthcare system because they don’t have the documentation to do so.
Anyway have a watch this short video on the issue so you can think about it with more information.
I know you are stuffing from this vile disease which makes the world look like a much more awful place. But one day we will see a therapy or a cure. And I think it’s going to be sooner than later
Cheers bud
https://x.com/rbreich/status/1839069874439524469?s=46
There are over 400 Inborn Errors of Immunity, many of them manifest in teen years or even 20s. Then, a person may have one broken gene where normally 2 would be required for an “official” diagnosis. This person may still have some symptoms of the disease (there’s recent evidence with MEFV and CFTR genes where this may happen), but will not be taken seriously by doctors. By extension, it’s not unreasonable to think that in many of these 400 IEIs, a heterozygous mutation causes a specific weakness in the immune system, which, when combined with infections trigger(s), results in various post-infectious conditions.
And if we look at specific IEIs, some of them make a person susceptible to a particular pathogen or class of pathogens. It could be Aspergillus, Candida, Pseudomonas aeruginosa, Atypical mycobacteria, etc, etc.
Interesting how Mark Davis found a large chunk of TCR repertoire specific to atypical mycobacteria in ME/CFS patients.
Vlad G,
So are there tests for these 400 IEI’s, and if they are found, can they be treated? What kind of doctor would you see?
I believe we will see a paper on IEM’s from ME/CFS in the near future.
Nice to know we were right back in 2020 when we said that the only reason we are hearing about Long Haulers (that was Long Covid’s earlier name) which was actually largely ME/CFS, is that it would get noticed because the entire world was about to be infected.
And with such a lot of people all infected at once, those that stayed sick with ME/CFS would have their voices heard by doctors due to the sheer sudden volume of them, plus amplified via social media where huge groups would be able to mobilise public pressure for funding etc
What I didn’t predict is they (the medical and research community) would rename ME/CFS as Long Covid and say it was a new disease, and when challenged that it was ME/CFS, the reply was “Oh no, Long Covid is much worse than Chronic Fatigue Syndrome” Then they’d rattle off the symptom list of Long Covid to justify why it was worse, but they had unwittingly just listed the exact same symptoms of ME/CFS! Plus they didn’t even seem to know very severe ME/CFS patients even existed. NIH researcher Avindra Nath is a prime example of getting that utterly wrong. (He means well though)
Nor did I think it would take over 4 and a half years of wasting over a billion dollars on researchers that had no idea what was going on, and worse that they’d failed to read the ME/CFS literature, and ended up reinventing the wheel with hypotheses that had years ago been dismissed by ME/CFS researchers.
Another thing I got wrong was I really believed funding would increase for ME/CFS research, when instead it has sat idle. Actually it’s less due to inflation and the closing down of an ME/CFS research center.
It goes to show how those with the power to make change aren’t listening. Or is it that ME/CFS researchers and their work needs to be promoted by us the patient group much more.
Long Covid patients were listened to due to their sudden arrival, volume and activist groups.
We need to be supplying our patient group with the names and emails of politicians and leaders, so we can non stop keep asking them for help.
Maybe Cort you could put an email list at the bottom of every blog asking readers to contact certain leaders.
And our job as patients (those that can) should be to flick out an email to them every day or so.
Because currently our best scientists greatest breakthroughs aren’t being seen by the medical community or funders.
Also, we as a patient group need to share the known ME/CFS research information with Long Covid researchers, to influence their ideas and hypotheses.
We patients need to be polite doing that though, as we don’t want to create a polarised ‘them against us’ situation
-yes, indeed!
– Some researchers did make that mistake despite the rather glaring fact that studies have shown significantly lower quality of life and functionality than other serious diseases.
All I can think is that this is a prime example of the arrogance of the medical profession. The good news is that virtually everyone is disappointed by RECOVER – it’s “sins” have not gone unnoticed.
I totally missed on this one as well….:(
– Somehow I forgot to put a link to the Moonshot bill in – its in there now.
I think the medical world is way to silo-ed, sorry for my english. That is one reason for long covid ≠ME/CFS. Everyone lookwithin their own area.
The other is the necessity in science to create well defined cases to reduce disparity/diffuseness (?) in their results. The more diffuse input => the more diffuse result.
But it is infuriating, all these (not this one though 😉 ) studies of small parts of disease mechanisms where the entire disease cause get muddled by all the details.
Later on I also hope for studies that places ME in the medical map correcty so that it looses its enigma and that comparisons and differentiations with other diseases gets easier. To the benifit to both ME-ish and to other-ish diseases
Hello Cort!
I just read this article on NIH:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9101946/
The punch line in the introduction is:
” Therefore, it is likely that a direct link exists between RAS dysfunction and long COVID development. ”
Before that they reviewer of long covid explained of RAS (renin-angiotensin-aldosterone system) that:
1. Ang I (angiotensin I) will bind onto an ATR1 receptor
2. ACE enzyme will cleave it in two to make Angiotensin II (Ang II) to cause vasoconstriction
3. ACE2 enzyme SHOULD come and cleave Ang II in two and thus restore vasodilation when the heart beat’s pump of fresh blood is done.
But since the Covid virus is docked on the ACE2 receptor,
the ACE2 can’t dock. Therefore, during infection, there is hypertension.
The bottom line is that if one remains in long-haul vascular dysfunction,
blood pressure issues will manifest as long covid sequelae.
But don’t forget that ACE2 receptors are in all smooth muscle cells, not just in vascular smooth muscle cells.
So that leads to kidney dysfunction of the microvessels as well as dysfunction of normal smooth muscle functions in organs such as maintaining tightness most of the time, but relaxing on demand.
I live in Sweden. I do not have a diagnosis of Me/cfs, but all the symptoms of this plague, as I call it to myself, are present. I am in a severe stage. I am completely housebound and bedridden.
I got sick 8 years ago, after a trip to the sea in a warm country. It all started with an abscess in my ear. Then there was severe congestion in the ear, then in the nose, then in the other ear. Doctors diagnosed: otitis media.I did not agree with their diagnosis, because I had otitis media as a child, and this is a completely different feeling. I suggested that it could be some kind of fungus or parasites unknown to science. The doctors laughed at me. They prescribed me antipsychotics and antidepressants and sent me home. I won’t describe all my torments. But the bottom line is this: I am very sick. I need help even to cook my own food.
And I have a lot, a lot of mucus. I cough it up and blow my nose day and night, night and day. Non-stop. And it seems to me that my whole body is filled with this mucus. It was as if I had been filled with iron, and the floor and bed were a magnet. And I carry 100 kilograms of cargo. 8 years of terrible torment. Nausea, pain, pressure in the ears and sinuses. Hoarse voice. If you describe everything, it would be Tolstoy’s novel “WAR AND PEACE”, judging by the number of pages covered.
Tatyana – thank you for your description of feeling like you’re full of iron, being pulled to the bed. Because you mention lots of mucus, you may want to try guaifenesin as explained in the 2019 book ‘What your doctor may not tell you about fibromyalgia’ by Dr St Amand. It’s a protocol that helps with many but not all MECFS symptoms.
I can’t comment on the rest of your post, but as a Deafness Studies postgrad, Otitis Media can range from mild to misery. It may linger, but is self limiting, occasionally needs meds or grommets and won’t cause permanent deafness.
Anything in your middle ear (middle=media) can escape through drainage channels. Did anyone send a sample of mucous to the hospital lab… as I say testing would be very rare unless someone had say suspected meningitis.
Have you been tested for allergies.
After 8 years I think this is part of the equation you can let go. xx
Tatuana, you mentioned a feeling of being pulled down towards the bed or floor. Many people describe orthostatic intolerance this way. Some say it feels like gravity has been turned up.
Cort has written several great posts on orthostatic intolerance over the years because many people with ME/CFS have it, and there are treatments that can help.
In Sweden, Dr Artur Fedorowski leads a clinic that treats orthostatic intolerance (among other conditions). POTS is one kind that you may have heard of, but there are others as well
Aargh, Tatyana, please forgive my bad typing and misspelling your name. I accidentally tapped the text while replying eith my clumsy fingers.
We have a fascinating interview with Peter Rowe on OI coming plus a review of his new books – stay tuned!
No surprise here.
Since childhood (born 1942) I’ve had “colds” or “flu” almost every winter. Sometimes lasting for months.
And now I’ve had Chronic Fatigue since at least 1999.
Each time I’ve had Covid, 2 or possibly 3 times, the CF gets a lot worse.
But now I have to ask the same question that EVERY research article provokes.
Will this research information speed up an actual CURE?
If it helps the medical research community to get serious about the field of post-infectious – then I think the answer is yes to treatments that help. Cures are hard to come by in medicine but finding significant help – I think the answer has to be yes.
Thank you Cort for your fast reply.
However. Although I recognize that it is NOBODY’S FAULT, the fact that
there are so many competing theories about the CAUSE of Chronic Fatigue
makes me very skeptical about an imminent cure.
I am 81 years old, and an ex community organizer. I still have many ideas,
but no strength to do anything.
Even cutting my FINGERNAILS is a big deal.
I’m hi Lawrence, I’m 79 and just got diagnosed. I’ve had it for about nine months. I’m wondering when you got it and if you know anything at all about whether the prognosis or treatment is different for the elderly, I would appreciate an answer.
The sad incident of so many people getting a virus at once creates a chance to study post-viral or post-infectious diseases on a large scale. And if COVID-19 is not atypical in causing ME/CFS and other post-viral conditions, then that means the research on it can be extrapolated (carefully) to all post-viral conditions.
Surely that is a good thing. I’m glad these folks were doing sensible, practical research that tells us useful stuff. John Snow would be proud!
I really missed the GIST this time but tried to skim the article without overtaxing my brain. Thank you so much for all your hard work and regular updates!
Sorry! Hit the wall on this on. 🙂
Sentence got cut off here: “Not surprisingly, it made it into a top-notch journal – the”
Roonie and B Rob: The “us vs them” mentality helps no one. Both more demand and not enough money contribute to the problem. Please don’t fall for the Marxist tactics of division. We all want the same thing – research that yields results. Leave the politicking out of it.
How are funding issues not related to politics?? How is the current official messaging around COVID and its long term effects (ie, minimizing and denial) not a political decision? In the end, it’s ALL political.
Readers of this website might be interested to know that Peter Rowe has written a book:
“Living Well with Orthostatic Intolerance: A Guide to Diagnosis and Treatment”
The publisher is Johns Hopkins University Press.
Amd here is an interview with Dr Rowe about the book from Solve ME:
https://www.youtube.com/watch?v=RHMcW1Lf8xE&t=64s
We have a review with him coming up as well 🙂
It’s interesting that they found that COVID-19 is no more likely than other acute infections to be associated with ME/CFS.
I do wonder whether it is more likely to be associated with all types of post-infection conditions though. It does seem to cause an awful lot of cases of orthostatic intolerance syndrome, for instance.
Perhaps that data was also collected and will be published in another study.
Not forgetting the excellent study on veterans that showed increases in diseases not usually considered to be post-viral, such as type II diabetes.
Ooh, one more question came to mind:
I believe anti-virals received during the acute infection are thought to reduce the likelihood of getting Long COVID. So did receiving anti-virals during the acute infection have any effects on the likelihood of getting ME/CFS specifically?
This is great. Now how about those of us whose ME/CFS is trauma, not virally, triggered?
Stéphanie,
Damn good question !!!
The best founded hypothesis that we have so far is that ME/CFS is smoldering HHV-6b reactivation. It can reactivate when there is a specific problem with the immune system. It’s mainly a type of T-cells that are in the center of the research.
Infections seem to be the most common trigger of this change in the immune system but other triggers were observed as well in ME/CFS for a long time. Chronic or massive distress is a big trigger for the immune system to become weak and defective.
On the other hand, it still might need an infection that comes on top of a distressing life-event and one might afterwards wrongly attribute the cause of ME not to a maybe only mild infection but to the distress in the wake of an overwhelming life-event – the data simply doesn’t exist that we can really say something about this.
Hi Lina,
I can’t deny that you may be right about a given infection required (which one, no idea) on top of a distressing life-event. However, in my case, it can’t be EBV (mononucleosis) or HHV (human hepes virus) reactivation because I have never ever tested positive to these viruses (many tests done along years and none ever positive). So, if it is really a virus or an infection in my case, it is not one of these ones.
Hi Canada, HHV’s are so called retroviruses (EBV is a herpes virus too). They are RNA viruses that go into latency in the genome of the host’s cells. Most of the human population have several of them.
What they did in your lab tests was whether you had an active infection. Because almost everyone has antibodies it is difficult with retroviruses to determine whether there is an acute infectious state.
The kind of abortive replication/smoldering inflammation (EBV and HHV-6b are in the focus) that is hypothesised in ME/CFS can’t be ckecked with the standard tests in the clinic. Only in research labs they can.
Have a look at what Cliff and Lacerda are doing in London:
https://www.brunel.ac.uk/research/projects/reactivation-of-herpesviruses-in-chronic-fatigue-syndrome
Very glad they are looking at HHV-6!
Hi Lina,
You may be right and you can be sure that I will try any treatment proven to eliminate this smoldering inflammation in people with confirmed EBV and/or HHV contamination as long as the pros vs cons ratio is good and promising, just in case this would fix my problem too.
I am just worried that concentrating only on these viruses as THE absolute cause is a bit like putting all our eggs in the same basket. Let’s not forget that nobody knows for sure actually, it is still pretty dark in the camp.
Yes, you are generally right with your eggs and baskets procedure. However, which other baskets do you know which are worth the eggs, the money?
Next to the claim that it is a defective immune system that can’t suppress atypical abortive, smoldering herpes reactivation anymore, there aren’t any convincing ideas around what else could lie at the root of ME/CFS.
There is the idea that it is a problem of autoimmunity. In Germany this research actually has a lot more money than the herpes researchers. But they haven’t brought forward anything convincing so far and very much opposite to the herpes research.
Which are the hypotheses for the explanation of ME/CFS pathomechanim that you would like to see more work and money go to?
I Lina,
I am fully convinced that a defective immune system is involved in ME/CFS. My divergence is with the root cause of the defective immune system. I have absolutely nothing at all against pursuing on this road but not necessarily only on this road.
1) Are EBV and HHV viruses the only ones able to disrupt the immune system ? No, Covid-19 appears to be too. Is Covid-19 the same as EBV or HHV ? Not sure. See below…
”This result suggested that COVID-19 infection might increase the risk of HSV2 infection, which warranted an in-depth exploration. So far, COVID-19 outbreaks have been associated with increased herpes virus infections (31). However, a direct association between COVID-19 and herpes zoster has not been identified.11 déc. 2023” NHI
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10749317/
2) Why would not a physical trauma or a PTSD (like an accident affecting certain essential body/brain structures) lead to a dysfunctional immune system ?
Again, nobody knows for sure actually, it is still pretty dark in the camp. We are then back with the eggs and basket…
Hi Lina,
I am fully convinced that a defective immune system is involved in ME/CFS. MY opinion differs in that EBV or HHV are not necessarily THE only root cause.
1) Are EBV and HHV the only viruses able to affect the immune system so ? Not sure. Covid-19 appears to be too.
However:
”This result suggested that COVID-19 infection might increase the risk of HSV2 infection, which warranted an in-depth exploration. So far, COVID-19 outbreaks have been associated with increased herpes virus infections (31). However, a direct association between COVID-19 and herpes zoster has not been identified.11 déc. 2023” NHI
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10749317/
2) Why would not a trauma or PTSD (like an accident inducing body/brain dammage lead to such an immune system disorder ?
We are then back to the eggs and basket…
Hi Canada, thanks for your reply.
I think I didn’t mention it here. The reason why I am so convinced of the herpes reactivation (HHV-6b) hyopthesis is that I belong to that group of patients in which the ME/CFS inflammation episodes can be fully suppressed with acyclovir. An anti-viral that works against herpes viruses nr. 1,2, and 6.
Important: There is a misunderstanding on your side about my claims. As I said somewhere above already in a reply to someone else, I believe that it is not important to look at the triggers (infection, trauma, unknow factor) that set ME/CFS off to find out about the pathomechanism of the illness. Simply because people with ME/CFS have a group of very similar core symptoms no matter what the specific trigger was.
The herpes hypothesis in ME/CFS is not about the trigger, it’s about the pathomechanism that drives the illness after it’s begun. And here it is the researchers Cliff and Lacerda and others who have found so convincing evidence that they were able about two years ago to claim that ME/CFS is HHV-6b reactivation.
I presented the link to their current study and their literature above.
You are not talking about pathomechanism, you are talking about triggers. For infectionary illnesses they are normally the same. However, ME/CFS is a different case. It’s been a consensus for a long time in ME/CFS research that it is not the trigger – or at least not the regular infections that are caused by EBV, Covid ect. – that run the chronic illness ME/CFS.
ME/CFS is not a standard chronic EBV, Covid infection or else.
When I was asking for your other baskets, I was asking which kind of hypotheses to explain the pathomechanism – the root cause that drives chronic ME/CFS you want to see researched.
The trigger is not the root cause. The trigger is the trigger. When you switch on your computer the ON button is the trigger. But it is not the root cause that your computer works. The root cause are all the pieces together a comupter needs to work.
I Lina,
I read your answer to someone else’s comment and I think I got you right. However, maybe I did not express myself clearly enough (my english is excellent but my mother tongue is french).
I rephrase your explanation: ”No matter the reason why you got sick at first (the trigger), the ME/CFS (the chronical illness, which was originally started by the trigger – no matter what it was), is now maintained in time by a reactivation of the HHV.”
Now, my point is that even though a very high percentage of the general population (let’s say 90 % as per your references) has small traces of a former HHV infection trapped somewhere in their body cells, it is not 100 % of the population. It remains let’s say 10 % of the population that has NEVER EVER had any HHV infection in their hole life and then can not have traces of HHV in their body which then can not be reactivated because such traces simply do not exist at all.
You may also well be right about the fact that I have not done the right kind of test in a specialized lab for HHV but if I had done so, these specialized tests could still be negative too and I am sure they are for certain persons. I am also sure that some of these persons have ME/CFS not related at all to HHV reactivation.
My goal is not at all to contradict you for the fun of it. It is very likely that HHV is the reason for ME/CFS of many many people and, just for this reason, in fact exactly for this specific reason, this road must absolutely be explored until this hypothesis is proven or discarded. Still, even if proven right, a certain amount of persons may well not fit at all under this umbrella.
This explains the origin of my opinion about not stopping right now exploring also other roads in parallel of this one. I think it is still too early (although we are all damn pissed off with having our lives in stand-by or even worse for certain persons) to concentrate ONLY on HHV because the worst case scenario of discarding this hypothesis in the end really exists.
I am an aerospace engineer working in research at the very cutting edge of technology and you have no idea how many of my wonderful hypothesis have been discarded by other scientists during my career. Life is a bitch 🙂
I Lina,
I read your answer to someone else’s comment and I think I got you right. However, maybe I did not express myself clearly enough (my english is excellent but my mother tongue is french).
I rephrase your explanation: ”No matter the reason why you got sick at first (the trigger), the ME/CFS (the chronical illness, which was originally started by the trigger – no matter what it was), is now maintained in time by a reactivation of the HHV.”
Now, my point is that even though a very high percentage of the general population (let’s say 90 % as per your references) has small traces of a former HHV infection trapped somewhere in their body cells, it is not 100 % of the population. It remains let’s say 10 % of the population that has NEVER EVER had any HHV infection in their hole life and then can not have traces of HHV in their body which then can not be reactivated because such traces simply do not exist at all.
You may also well be right about the fact that I have not done the right kind of test in a specialized lab for HHV but if I had done so, these specialized tests could still be negative too and I am sure they are for certain persons. I am also sure that some of these persons have ME/CFS not related at all to HHV reactivation.
My goal is not at all to contradict you for the fun of it. It is very likely that HHV is the reason for ME/CFS of many many people and, just for this reason, in fact exactly for this specific reason, this road must absolutely be explored until this hypothesis is proven or discarded. Still, even if proven right, a certain amount of persons may well not fit at all under this umbrella.
This explains the origin of my opinion about not stopping right now exploring also other roads in parallel of this one. I think it is still too early (although we are all damn pissed off with having our lives in stand-by or even worse for certain persons) to concentrate ONLY on HHV because the worst case scenario of discarding this hypothesis in the end really exists.
I am an aerospace engineer working in research at the very cutting edge of technology and you have no idea how many of my wonderful hypothesis have been discarded by other scientists during my career. Life is a bitch 🙂
Hi Lina,
”Acyclovir (Zovirax®) and valacyclovir (Valtrex®) are antiviral medications
given by mouth to reduce the duration and discomfort of a herpes outbreak
oral (“cold sore” or “cold sore”) or genital herpes.”
As far as I understand herpes virus effects, if someone already got infected, at the very beginning of herpes infection at least, he should have symptoms on the lips and/or on the genital organs. Moreover, when you have a relapse, these symptoms will normally reappear.
Personnally, I know for sure that I have never had any of these symptoms in my entire life. Then I still think (even though I have not done specialized lab test) that I have never had herpes and that this hypothesis of HHV, although likely to be true for many people, probably does not hold for me. Unless I have been contaminated by ”HHV infection residuals ” from other peoples without having developed herpes directly myself, I really do not see how I could have herpes reactivation.
On the side of other root causes, I am not competent enough in the field of virolgy or immunology to suggest anything.
Hi Canada
You are right that (val)acyclovir is given standardly only against herpes 1 and 2. It has good activity though too against HHV-6b according to a textbook. The reason is that with val(gancyclovir) there is another anti-viral that has even better activity against the full blown and normally lethal HHV-6b brain inflammation in patients with a suppressed immune system for example when they undergo organ transplantation.
What is important to understand about the herpes theory to explain ME/CFS pathomechanism is that it is not the typical known reactivations that are theorized but a smoldering or in the language of the molecular biologists “abortive” reactivation.
Maria Ariza in her 2020 overview paper on herpes in ME/CFS gives an explanation of that form of viral reactivation that is known in virology only for about twenty years.
It means that retroviruses – I think it is mainly them that are capable to do this – can show some activity and execute the first few steps of their reproduction process but not finish, and thus not produce a full blown infection where you can find a big amount of replicated virus.
Cliff and Lacerda in their study actually have found HHV-6b in one group of ME/CFS patients with amounts of viral load in saliva that corresponded to symptom severity. However, we all know that ME/CFS does not look like a full-blown HHV-6b reactivation which takes the form of a severe brain inflammation where you have to be treated immediately on an ICU ward.
Regarding what you are saying about herpes viruses. It seems that you haven’t fully grasped the concept of it. (I just read up and understood that strictly speaking they are not retroviruses.) However, what I refer to, is their character to build themselves into the genome of the host cells. I have to read up about this!
That’s why with herpes we talk of reactivation and not reinfection. Because when the conditions are right for them with a weakened immune system they wake up from the host cells.
Thanks for discussing that all. I have started to write an overview for ME-patients about the herpes hypothesis as an explanation for pathomechanism in ME/CFS and discussing this through with you has given me many insights about where I have to give extra care to explain well certain features of ME/CFS and herpes viruses.
To sum it up: I am not against anyone doing research on other hypotheses on ME/CFS pathomechanism. But what I advocate for is that patients understand that it is not autoimmunity or anything else but the smoldering herpes virus reactivation hypothesis that is the best hypothesis to explain ME/CFS pathomechanism with the most empirical support.
Hi Lina,
I think that I got you 100% right this time.
Everybody would have small traces of latent HHV-6 in his genoma transmitted by heredity (already there at birth) and it would then not be required at all for someone to have had an EBV/HHV infection of any kind (1 to 6) in his life to be sensitive to this special type of ‘partial’ reactivation called abortive reactivation (root cause of ME/CFS) when the immune system is weakened for whatever reason (trigger).
If everybody REALLY as these small traces of HHV-6 in his genome, this COULD then explain almost 100% of ME/CFS cases.
This has still to be proven with a massive HHV-6 specialized testing and then a famous massive double-blind placebo trial with (val)acyclovir and/or val(gancyclovir) on the same persons ideally to check if it really allows to get ME/CFS under control (remission). For sure, this should be done.
However, as far as I know about HHV1 and 2, it is totally impossible to get rid of it once you have it (no known cure). The HHV-6 being already trapped in the genoma at birth, I would guess that it is also logical to assume at first sight that there is no way either to run ”the dust buster” on your cells to remove it from there.
If this hypothesis of HHV-6 is real, then we are maybe f… screwed (:-) sorry for the bad word). Indeed, my cousin got a kidney transplant 30 years ago and he has no choice to take these kinds of immune system weakeners to prevent a kidney reject by the body. This long term medication is extremely harmful for the body causing all kinds of dammages in all kinds of systems and is probably killing him slowly although saving his life everyday at the same time.
For the same reasons, I am pretty sure that it was not possible for you either to take the anti-viral acyclovir everyday of your life to keep ME/CFS under control. Am I mistaken ?
Then we may potentially have the root cause known (still to be proven and confirmed), which would really be very great. However, we may not still have a fix and then a less ‘toxic class’ of effective medication will probably have to be developped.
Hi Canada, Our posts have become so narrow, that I am going to reply to your post at the end of the comments section.
Hi Lina,
I just got a flash about another road which should be explored in parallel of yours.
Do you remember this study reported by Cort about 2 – 3 months ago ? I was extremely impressed by the following achievement. It was about a team having been able to ‘reset’ the immune system of mice to move them from panic mode and back to normal mode. Maybe the fix to HHV-6 is not to keep it under control forever. If the initial trigger is not there anymore, the immune system has perhaps only gone wild and is latched on in this panic state. Maybe such a kind of reset could also fix the problem definitively without the need for a permanent medication.
When I, ages ago, had reactivation of Varicella I read that it often reactivates during a period of disturbed immune system. 🤔
That stress, espescially long term stress, can lower the immune system and thereby reactivation is possible. Could this be part of the answer?
Yes, the herpes hypothesis in ME/CFS states that after a defective change in the immune system it is not anymore able to contain HHV-6b reactivation fully and a smoldering episodic reactivation begins to occur. HHV-6b is a virus that is latend in about 90% of the population and it normally doesn’t make any big problems except for those with an extremely weak or immuno-supressed immune system (organ transplantation, AIDS, ect.).
Here you find a summary of that hypothesis: https://www.brunel.ac.uk/research/projects/reactivation-of-herpesviruses-in-chronic-fatigue-syndrome
As a scientist myself, my field is biomechanics, I am cautious of single solutions for big complicated problems. I am not discounting that trauma can reactivate infections in some people, but, like Canada, I do not show any evidence that this is so. I do not resent at all that attention is being paid to viral causes, as they seem to predominate and I would rather that no one else had to suffer with ME/CFS, but I don’t want to be forgotten as treatments and prophylatics are developed. I don’t want others who experience serious physical or emotional trauma to develop secondary ME/CFS either, and I’m not counting on anti-virals working for them.
I appreciate that you don’t want to jump to conclusions too quickly. However, ME/CFS is a quite homogenous syndrome that is standardly diagnosed with the Canadian consensus criteria. People who have ME/CFS mainly have had viral triggers but many others are known for a long time.
Since the picture of the illness is in its core symptoms the same for everyone we may conclude that there is one underlying pathomechanism. Therefore, which kind of trigger anyone had is irrelevant as soon as you have developed ME/CFS.
The herpes theory in ME/CFS is not about the idea that it is an ongoing standarf infection with a trigger virus that causes ME/CFS but it claims that all the known triggers damage the immune system in a way that herpes viruses wake up in a type of reactivation that is unknown so far and produce smoldering episodic inflammation that can explain ME/CFS.
Bhupesh Prusty is one of the leading researchers into ME/CFS and the herpes reactivation hypothesis. He has several interviews on Youtube where is explains this theory.
Hi Cort, you probably posted on this already in an earlier blog post, but can you link to the article referenced here: “ There was a big exercise study suggesting that metabolic problems at the cellular level were causing strange breathing patterns.”
I’ve long had what I dubbed “wonky breathing” so I’d like to at least read the abstract of this paper. Thanks!!
We have more on breathing coming up 🙂
https://www.healthrising.org/blog/2022/06/25/chronic-fatigue-syndrome-gas-exchange-disease/
Thank you kindly!
Thx again Cort for a great article!
Post infectious is a misleading name that excludes groups that got ME following physical trauma, stress or in some cases vaccination. All these cases suggest it’s the immune response rather than the pathogen driving the issue. It’s really disappointing that those harmed by vaccination are shunned. If we’re going to study this (and we should) we need to include and talk about ALL those affected.
The Long COVID Moonshot bill provides funding for post-vaccination long COVID – so let’s get that passed. I do hope that the non-infectious subset – of which I am probably one (except that we know that people can be post-infectious without having symptoms of the initial infection) – will be clarified by the focus on the overtly post-infectious. We have to start somewhere….
Well, I was hoping Cort was going to cover this study by Solve ME funded through the Ramsey grant program and published in July.
“Hypocortisolemic ASIA: a vaccine- and chronic infection-induced syndrome behind the origin of long COVID and myalgic encephalomyelitis”
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1422940/full
This study actually has some new treatment options like ginseng which I have been trying with some success. Not capsules which upset my stomach, but Korean Ginseng Patches where you absorb the ginseng through your skin.
Interesting!
There’s actually quite a few interesting studies and research happening that hasn’t been covered here. That’s not a criticism of Cort – he does an amazing job. I see it as a positive- there’s so much research being done that it’s impossible to keep up!
“We needed a new pathogen to sweep the field to highlight the post-infectious subset.”
We reading your article absolutely understand the logic of this.
Unfortunately I suspect it will be negatively received by long-haulers in particular. For one thing they often have an antipathy to being lumped with “mystery pathogen ME/CFS”.
For another, they (rightly) understand that these results could play into a narrative of haughty dismissal from long-Covid-sceptical physicians:
“See, if long Covid was a thing we would have noticed it by now, but it occurs at the same rate in mystery virus “controls”! There’s nothing behind this except lockdowns and mass hysteria.” for example.
I welcome the study but wonder if it will be received as minimising to LC if there’s nothing “unique” about the novel pathogen in terms of post viral disease outcome.*
And therefore used to dismiss patients accross the board.
I hope I’m wrong!
*other than massive scale, of course..
I know it’s super frustrating for everyone with ME/CFS how people with Long COVID and those in medical community are trying to make these two different things and not understand the overlap and acknowledge ME/CFS but at least ME/CFS is being talked about a lot more and more studies are happening on it. Fibromyalgia is being even more ignored despite a subset of long COVID patients having fibro symptoms and despite its overlap with post-infectious illnesses. In fact, it is not even mentioned in the Moonshot bill much to my disappointment.
Just saw this article on MedPage on chronic Lyme and happy to see post-infectious illnesses and their overlap gaining traction among the medical community. https://www.medpagetoday.com/infectiousdisease/generalinfectiousdisease/112079?xid=nl_mpt_DHE_2024-09-23&mh=5c6e5700b5a28082713c2a17cc67cb7a&utm_source=Sailthru&utm_medium=email&utm_campaign=Daily%20Headlines%20Evening%202024-09-23&utm_term=NL_Daily_DHE_dual-gmail-definition
Hm, short question. Hard answer, I guess. One wonders if these infections causes ME by reactivating EBV/mono or other reactivations such as Varicella? If so what else can reactivate ? If not – how do these infections cause ME-like diseases? Is it somehow that an infection or reaktivation or stress, physical and psychological trauma or iatrogenic damage etc that causes inflammation which in turn trigger this multisystemic picture? Like inflammation is discussed to cause diabetes, depression, schizophrenia, MS, Parkinson and alot of other diseases?
I myself have not a clear infectious cause, but I fit to the criteria CCC and 2015 IOM criteria.
This is a revelating study indeed and finally takes us away from Fukuda and other confusing diagnostic criteria. Would have preferred CCC criteria though.
Is there any relevant research on stressrelated disorders/exhaution and ME? I have read some on stress in relation to MS. And to be clear not the biophycosocial explanation. Do we need the infectious onset solution first to further research how other factors can cause ME, or ME – like diseases?
And I realize I fooled you that I had only one question … 😳😁
Cort, thank you for all your work on Health Rising. I’ve been a reader for the past year but have not commented until now.
I’m very surprised by this finding. All the research I’ve seen indicates that COVID infection appears to be more likely to cause ME/CFS than many other common respiratory infections, such as colds and flu. The prevailing narrative suggests that long COVID occurs after ~10% of acute cases (with the Omicron variants), and about half of long COVID cases meet the diagnostic criteria for ME/CFS. By this logic, it should be that 5% of COVID cases result in the development of ME/CFS.
However, I am also doubtful of this, as most people have had COVID at least once by this point, and I am fairly sure that less than 5% of people have developed ME/CFS as a result. It leads me to think that the likelihood of ME/CFS after COVID is not as straightforward as the literature on long COVID suggests, but perhaps it’s possible that COVID presents an ME/CFS risk more comparable to viruses that affect the nervous system (EBV as a common example), rather than the common cold.
Any thoughts on this are welcome.
This confirms my experience. My first significant infection that I’m aware of was H.Pylori that caused major gut symptoms for 20 years but doctors missed diagnosing. During that time I pickled up herpes simplex which frequently reactivates and requires constant suppression with medication. Some of my systemic ME/Fibro symptoms go away on the antiviral. I got into a reasonably good state of remission last year but a recent infection of mycoplasma pneumonia a few weeks after a stressful relationship breakup kicked me back and I’m still struggling months later. Suspect I now have candida dysbiosis as a result of the antibiotics.
I constantly feel that I’m under threat from common pathogens and spend half of my life trying to treat them, avoid them or strengthen my resiliency. The rest for the time I’m trying to treat all the other effects of my illness. All while trying to rest enough and not stress. Ha!
A Novel Blood Test Could Revolutionize Chronic Fatigue Diagnosis
https://www.psychiatrist.com/news/a-novel-blood-test-could-revolutionize-chronic-fatigue-diagnosis/
This blood test was able to identify ME/CFS patients with 91% accuracy. It was even able to predict severity. Why haven’t we heard any more about it?
Without waiting for a billion dollar moonshot, this novel blood test research was supported by an ME Association project grant to KM. The authors thank Professor Antonyia Georgieva and Dr. Jonathan Williams for critically reviewing this manuscript. WEH acknowledges support from EPSRC (EP/M002403/1 and EP/M02833/1). We also thank Suzhou Institute of Biomedical Engineering and Technology, Chinese Academy of Sciences for financial support.
And here is an idea. This is the second study on this finding. A small pilot study preceded this one. Why not contact the authors of this study and find out how much it would take to do a larger 500-1000 person study to confirm this test? This would be a effort worth raising money for rather than trying to move the elephant that is congress.
Once there is a way to identify cases of ME/CFS, the treatment studies will have some teeth.
Exactly! From The University of Oxford, no less. As you say, surprising it didn’t get more profile.
This is a USA-based website, but there’s lots of amazing research occurring throughout the world.
Cort you are very optimistic because post infectious disease goes back to the polio era with a rather woven history with each variation (post-viral fatigue syndrome, post-viral syndrome, post polio syndrome, chronic fatigue immune dysfunction syndrome) providing theoretical support for each other, even though they were telling different stories. Interestingly, post-infective illness, as a term, has been around for more than a century but, in recent years, it has taken the form of an ill-defined entity that relies on the historical L A County General Hospital (1934) events, which are still shrouded in mystery. I welcome your comments because this is only the beginning of a much bigger story. My reference “Beyond the Birdcage: Inconvenient Truths about Myalgic Encephalomyelitis, published 2022, Jennifer McBryde.
Hi Canada, I am replying to the post where you mentioned your cousin on immune suppression drugs: Yes, you are completely right about the acyclovir cure. It can only suppress the acute inflammation but then when the situation is right (too much distress) it comes or it would come of course back. I also want to mention that I only received it three times. But then my doctor got too stressed to prescribe me medication off-label and she was also worried because acyclovir causes liver damage.
Gladly at that point I had understood from my own experience but also from the discussions online that I could also learn to control the reinflammation by learning to perfectly rest and pace. So I did that. I was luckily only moderately ill at that point and within about 18 months I managed to pace so well that I haven’t had any relapses since almost two years now and I have a good regeneration process. Damaged mitochondria, vessels, I feel are recovering slowly but gradually.
I still want to have acyclovir for an emergency situation where I wouldn’t be able to control stress. This is what I am going to discuss with my family doctor and specialist. Since there is so much improved results on HHV-6b now I think I might have a chance to convince them to give it to me.
I believe that there certainly are innovative pharmatheutical solutions to herpes viruses. Health organizations in Russia claim that they have a good treatment againt HHV-2 chronic reoccurring infection and other herpes viruses. I don’t understand the working of their treatment but I have heard from one of my doctors whose familiy comes from Eastern Europe that he knows people who told him that the cure worked for them.
I still have the link to their website somewhere if you’re interested. But it is only in Russian.
As to the hypothesis that ME/CFS is just an overreaction of the immune system. For one, there is no evidence that this holds true. And secondly, I am pretty wary against that hypothesis because the narrative shows the pattern of wide spread misogynist stories that gaslight women’s experiences. “oh, even when there is little or even no cause she has a totally extreme emotional reaction.”
By now, there is so much evidence around that herpes reactivation is involved in ME/CFS that I think that this speculation about an immune system out of control for no reason should really be dropped.
Hi Lina,
Your answer totally confirms what my cousin told me about the pros and cons of immune suppression drugs (although he has no other choice). The same thing also holds true about anti-viral drugs (which he has had to take many times too because his weak immune system makes him prone to catch every virus in his surrounding from a simple flu to other very dangerous ones).
This is exactly the reason why your doctor does not want to give you acyclovir permanently (liver dammage and maybe others too). You are even very lucky to have been able to convince him to even let you try it. Here in Canada, doctors are still more chicken. I have never been able to convince a single doctor to let me try any medication for an application not officially approved on their list and I was not at all asking to try cyanide :-). If the business case is bad, drawbacks worse than advantages then it is only a very temporary solution for an acute situation where your life imay be threatened.
Regarding the possibility of an immune system out of control as the root cause, from my own personal experience, I could easily make many arguments in its favor.
Yes, it is true that when I am stressed emotionnally (stress at work or life events) or physically (too much physical activity that I still try to do in spite of the PEM because I am a sportsman born), my ME/CFS are increasing proportionnaly.
However:
1) I have had during about ten years extremely bad food intelorances and/or allergies. I could only eat rice, potatoes, biological vegetables and meat. I even bought a bread machine. Indeed, ANY food additive of ANY kind, I had extreme reactions to. Anti-histamine worked well for me which is proving that my immune system was highly overactivated.
2) I have had very severe MCAS with some kind of internal blisters in between the muscles and the skin when doing sports. This was like pockets of lactic acid or bad muscle by-products due to impaired mitochondrial function. When these blisters were blowing up it was burning like if acid from a car battery was poured inside my flesh. Then I had a bad bruises and pain for days. MCAS is another very clear sign of an overactivated immune system.
I could keep going like this for a while…
In my personal case, until I am able to confirm that I REALLY have latent HHV-6 in my system (which I still seriously doubt actually), I will keep believing that the root cause for me is autoimmune. This being said, I totally support your hypothesis but I think this is not the ONLY root cause and that not everybody fits under the umbrella of your hypothesis.
Cheers
Hi Lina, No reply button above – so posting here.
You mentioned that you are writing an overview of the HHV hypothesis. I’d very much like to read it. Where will it be available?
Have you considered publishing it as a guest blog here?
Please let us know when you write it. I’m too severe to read all of the comments. I miss so much. I hope that it has some visibility so that I can see it.
Thank you!
Hi Tab, sorry that you are so ill. And thanks a lot for your interest.
It will take me some time to write that overview and yes, I will of course make people aware when it’s ready.
In the meantime I can suggest that you read the presentation of the research project on HHV-6b that is going on in London under the lead of Jacqueline Cliff and Eliana Lacerda. They explain their hypothesis there:
https://www.brunel.ac.uk/research/projects/reactivation-of-herpesviruses-in-chronic-fatigue-syndrome
I will beg Cort to inform you via email when I have finished it if that’s of service for you.
Hi Lina,
Do you know the exact name or type of testing that should be done to determine if a person has or not a latent trace of HHV’s in his genoma/cells ?
Just in case that I have an opportunity to pass this kind of test and if this does not cost an arm and a leg.
Thanks
I am not an expert yet on how HHVs are tested. All I know is that it is complicated and there are few and also not very reliable simple lab tests for acute inflammation. But it doesn’t exist for all HHVs, especially not for HHV-6b. The standard lab tests whether you are infected at all do not check the genome of cells but they work via anti-bodies in the blood. And I think that’s the reason that it is difficult with herpes to decide whether there is acute activity or not.
I recommend that you ask your doctor to look up for you the possibility of testing for HHV-6b during a flare-up. I am now doing that too.
As you might have seen it presented in the overview of Cliff and Lacerda’s current project it was in the saliva that they could find the HHV-6b in an amount according to symptom severity.
I found that very interesting. It might be the case that ME/CFS herpes virus research wasn’t successful because the idea that during a reactivation the virus can be found in the blood was a hindrance to the insight that it could actually be found in the saliva.
Given that hepes viruses are known to be transferred as smear infections it seems obvious.
This is interesting. I am a 70 year old woman who was the director for the Louisiana CFIDS (chronic fatigue immune dysfunction syndrome) Association from 1987-1992. Alison Schenk,from NOLA, a former nurse, was assistant director. I had been diagnosed with CFIDS (at the time called Yuppie Flu, Chronic EBV, Chronic Fatigue, & Chronic Mono) in 1984, in Atlanta during the heyday of the discovery of AIDS. I had moved back near my family because I was pretty convinced I was dying, and wanted my toddler to know my family who would have to raise her. We managed to build a network of medical professionals who didn’t think that we were just depressed yuppies or hysterical women. For a little while, primarily because we got the leftover AIDS research, and partly because Cher & Randy Newman shared our diagnosis, it looked as though they might find us some help. It might be interesting for us to share the research, solutions, resources, and publications from back there with you all, if you are interested.
Sophie rouse