@@stephangauthier911 I resonate with what you just said. The feeling of your body decaying. I wake up every morning with that feeling and I have never been able to express it.
Thank you for the another well-explained long haul COVID video interview. Having long haul COVID has forced me into a proactive mode of learning as much as is possible for the layman. I anxiously await the releases.
Gosh ! It doesn't get any simpler does it ?! Who could have imagined the underlying pathology of LC could be this indicate and complex , and some. Still confident we will find a drug or somevothet therapy to turn the lives around of all of those who suffer from the on going pathological legacy of post - viral infection...the amazing researchers slogging away to unravel and find answers , and then Gez , distilling and elucidating it then presenting it for us in an accessible form. Great job ! ❤😊
Dr Prusty is onto something here. I have had ME/CFS for 7.5 years and there were 3 occasions where I would get 1 day remissions form it : 1 was when I had food poisoning and a high fever, other time stomach flu and the third time regular flu with high fever. All of those infections where followed by a 1 day remission of ME/CFS/POTS/MCAS. Sadly, on all of those occasions it lasted only 1 day. Also, all of those happened in the last 2 years. Previous to that I never got any remissions and also I wasn't able to produce a proper fever.
Really helpful as ever Gez; digestible content delivered well 🙌 I've read and listened to several Prusty interviews/articles and i think im just starting to understand it 😆
There’s one thing I still don’t understand. If a viral reactivation causes long covid, what causes relapses? Is the virus never neutralized again? Why do we get better and then worse again?
So reinfection then? It all gets triggered again? Or maybe just stress can make the autoimmune response stronger hence bring up the symptoms again? I hope all of this research results in a treatment soon, although I watched you last video with the german doctor who said there is a long way yet to walk. I wish there were something we could take at home to clear up this latent viruses from our tissues. Thanks again for all this information!
Latency means you still have the virus inside some of your cells, no need for reinfection. Any kind of stress can trigger the reactivation of Herpes viruses. It's unclear if the threshold is just lower in ME/CFS or if there's no healthy response to the normally occurring low level reactivation.
look into natural immune fluctuation - it's an oscillation between regulatory T cell versus effector T cells overpowering each other by taking turns - there is always one side on top (basic logic, binary phenomenon) - so but when one side of immune system goes too far, the opposing one is switched on to suppress the other one (unless there is good reason not to) - the switching can be really sloppy in immune-compromised - in healthy people the oscillation is quick and shallow between immune suppressive cells and attacking ones - in diseased state, one side can run too deep and you get long oscillations. Cytokine signaling plays a role - IL-2 is known to signal both sides, the receptors for IL2 change. Basically, this fluctuation can give you better or worse feeling for days - feeling sick when no actual pathogen to clear or the feeling airy and inflammation when there actually should be one to clear the pathogens/ruined cells off. Anyway, one requires good fiber rich, polyphenol-rich, diet to keep the immune cells powered (T cells use a metabolite from fiber fermentation for their energy requirements).
I haven’t understood all of the ramifications of this, but I do want to ask whether the ideas that I have would make sense in terms of the processes described here. In the course of ME/CFS, even over the long term, it continues to get worse after exertion and to improve the more one rests. Some severely ill people who have sought treatment, and tried treatments over the years have only begun to recover after they had ‘given up’ - given up the search. I think that when we get sick with a viral illness, we should take the old-fashioned advice - go to bed and stay in bed until after you have recovered - in my childhood, defined as having a normal temperature for 24 hours. People with mononucleosis (glandular fever) were specifically warned that they risked long-term illness if they did not seriously rest for an extended period. Ramsay made his ME patients go to bed for six months. All this is anathema to our exercise-focused modern culture, where recovery seems completely conflated with regaining exercise fitness, and there seems to be a medical phobia of deconditioning as a result of inactivity - Clare Gerada actually said that there is nothing that is not improved by exercise. But going to bed and staying there had the purpose of enabling the patients to have full use of all our body’s resources for dealing with pathogens. Here we are talking about an extremely complex set of interactions and reactions, in which certain functions start working against us (autoimmunity), and set off processes which continue to cause us harm. Does it not make sense that patients should be strongly advised to adopt some version of ‘going to bed and staying there’? Should we not be encouraged to understand resting, conserving our energy resources by minimising the demands of physical activity is actually the most comprehensive, safe and effective treatment which we yet have?
To be honest, I absolutely don’t agree with too much bedrest. My experience with long covid symptoms has been that an important change only took part after shifting to more frequent light movement with a suitable intensity that didn’t trigger an increase of symptoms. Alternating light movement, with passive rest, instead of sitting on the couch or lying down for hours, felt necessary to keep my blood circulation going to not make certain symptoms worse. Also, when I started to move more often and at a certain intensity after half a year of mostly having been passive, it triggered something in my breathing patterns. It was that what made me get rid of the hyperventilation-issue. Within a few weeks, moving seems to have been the start of my brain/body understanding how to apply a more normal functioning breath again, which adapted automatically to the exertion (for example, while standing up from seating position, walking the stairs or having to bend over to pick something up or do the laundry). Each time I performed such an activity, I noticed how much difference that automatic breath adjustment made. It instantly gave more energy. Moving more (within boundaries), to me felt like the first switch to physical recovery.
@@TwoMillionth It makes a lot of sense to me that during the first phases, when the immune system is figuring things out and fighting it, complete rest makes sense - and that once the immune system is more or less on top of it, progress could be made through carefully limited new exercise. The focus needs to be on respecting limits - and figuring out ways to do normal things with minimal exertion, rather than trying to increase and increase as an end in itself. Garner and Gerada (Wessely's wife) insist exercise cured them, ignoring the fact that they both had a considerable period of rest before the exercise. It wasn't the exercise that cured them - it was the protracted rest beforehand (in Gerada's case, her physio began by limiting her to ten minutes a day - so 23 hours 50 min of rest a day? at first) which enabled them to then benefit from exercise.
No need to be sorry and thanks so much for the content this is the closest explanation I've heard yet. I don't agree with the other comments below though, in part 1 you gave a little summary that really helped and mid way through this video you did a snap shot of what he just said and I was like "ooooh i get it" after you said it. Just helps for some people to explain it it slower simpler terms. Obvious these people are professionals and not content creators so the info kinda spills out if them in technical mumbo jumbo as opposed to an experienced content creator like yourself. I'd be the same as them if I did a video about my work. Thanks all around though much appreciated
I do have ME/CFS, LC, diagnosed with Lupus, VWF, APS, HSV 1 and HSV 2, thrombosis, low cortisol, petechia and other severe skin condition. But no real help in Germany.
I have had low natural IgG, IgA, and IgM since the first time I was infected with covid....Are there any drugs/supplements to boost them? I have tried several things but with no success
Here's a few interesting things I noticed, I was looking back at my diaries of when I first got infected in dec2020. On of the things I had written was that I never developed a fever at all while my wife did (she recovered fully) I wonder if that is a precursor to making the IGM antibodies that seem to be depleted in LC? Somehow my body jumped straight to making the IgG ones and sort of skipped a step . Another thing is ANY endurance type sport will make you have a lower IGm response for a couple of hours/days if the recovery is too short, which explains why ,when you train really hard the next day you more than likely have a slight sore throat/nose especially if you doing sport within close proximity to other people. I Got Covid at the beginning of this year AGAIN and this time I just booked myself straight into hospital the moment I got confirmation I had it and the symptoms this time were very mild compared to the first time. One of the things they did was give me some sort of antiviral ( they wanted to give me a pill form but, I said id rather do an IV and save my gut). when I got out of hospital ,for the next month I felt as if I had totally recovered and I was determined NOT to blow it with exercise but, I ended up with a lot of mental stress instead and I think it pushed me over as well. keeping a diary is a good thing, I can defiantly see I've made progress because some of those pages I couldn't even read as it brought back bad memories.!
So is the thesis that once autoimmunity begins, it will continue and worsen unabated? If that is the case, then surely we need urgent advice on how to quell the autoimmunity fire, regardless of what caused it.
@@RUNDMC1 unfortunately it's started in me as I have developed graves disease 2 years after apparent recovery from long covid. I think autoimmunity will be the huge post covid pandemic. Look at recent reoprt of type 1 diabetes in children and adolescents
I totally agree, first you try as many therapies as possible then figure out why it worked later. I feel a lot of time and money is wasted trying to understand everything about it before trying things.
@@adrenalinejunkie3828 I've very little contact with people now, but for years and years I was still fairly functional and didn't catch anything either. Nor from my school-going kids, even when they were ill.
@@RUNDMC1 Hey Gez! Excellent video! Try to do a video with dr. Leo Galland (google his website for LC treatment PDF ) - he has a nice overview of the long covid spiderweb AND, MOST IMPORTANTLY, an explanations on how to strengthen the immune system (thats what we need here).
Was also thinking about that but I think it's a very slim chance anyway as they say it's supposed to be taken early on..... I'm years away from that start line
Hey there I have question I just had ct scan done saying I have multivessel coronary artery calcification sounds like covid did this. It got worse from April anything that you have studied on this and what to do Please let me know. I even got high cholesterol levels from covid
I wonder if its possible that the IGM is depleted because the virus causes so much damage to the body that it has to do a lot of 'scavenging' so it gets used up, but presumably it would have recharged months later well after the virus infection is gone ? His theory does explain why some people only experience 'post viral fatigue' but recover, whereas others maybe with weaker immune system, more stress, continued exercise etc get stuck in ME/CFS or LC.
This is so interesting and this presentation triggers more questions that I cannot articulate properly. What I take from this is everyone who has been infected by the virus takes about a year to return to normal even if they do not present with symptoms of Long Covid. Would a second or third infection within that period put a person at a greater risk of developing Long Covid? If the majority of the infected population does seem to recover, does that mean that Sars-Cov-2 did not reactivate the herpes virus that most everyone harbours, or have their bodies successfully modulated the reactivation (for the time being)? As time goes on and immune systems weaken due to aging, is it likely there will be problems down the road and that autoimmunity may be inevitable for everyone? Will repeated infections also increase that likelihood? If an antiviral such as Paxlovid were taken immediately upon awareness of infection, can we assume the reduced viral load on the body is likely to reduce the time the body needs to recover? Anyway, thank you Gez for your curiosity and your willingness to share with everyone. Erika
Thanks Erika! Lots of questions - we still don’t know what the long term impacts of covid infection are, even for those who don’t develop LC. Plenty of after effects in the immune and cardiovascular systems even for those who haven’t got immediate symptoms - does mean that their response to certain triggers isn’t what it was before.
@@RUNDMC1Certainly the rise in cardiovascular issues since the pandemic suggests something is wrong, as well as the rising rates of diabetes in children and that's probably just the tip of the iceberg. I continue to worry about the health of my family. Strange and challenging times we live in. Your job isn't done yet, Gez! Big hug of gratitude!
Oh this also explains why some people being treated with paxlovid fully recover! Although it is curious that after taking the drug symptoms come back. This is all very mysterious 🤷🏻♀️
Many people don't get their symptoms back after treatment with Paxlovid, but maybe that's because their viral load was lower or that they took the antivirals quickly enough. I think there's a study going on at Harvard that's looking at Paxlovid - maybe people need to be treated longer or at a different dosage.
Soo..do we do IgM IVIG? My nIgM is definitely depleted at 26 with 50 being the low range. However IgM is not part of IVIG in the US so would just boosting IgG help?
Hi Gez Medinger and Doctor, I have been fighting a severe case of Ramsay Hunt Syndrome since October 2016. When I get flare ups it seems BOTH viruses flare up. RHS, thank GOD, is very rare. I find I have more impact from Covid on my RHS affected side of my head. I have always said I feel like the 2 viruses are chasing each other around and fighting over who gets the Host. I am on Acyclovir because I get blisters in my mouth from the Herpes Zoster every time I try to stop or miss a dose. 7/20/23 at 11:59 p.m will be my 3 year anniversary of Covid, though I honestly think I had it twice before the tests were available and the virus was known. I had pneumonia and a stomach flu in December 2018 and a severe stomach flu with a flare of RHS in January 2019. I was out of work 10 months from Covid. My emploer refused to allow me to work part time as my doctor recommended and refused me workers comp. I went back to work as a Nurse and worked for about 16 months before I just couldn't go anymore. I believe I got Covid again last November. I was working in home hospice. The caregiver did not tell us everyone in the house had Covid until the patient was dying. So we were working without our Covid mask or gowns. I am gradually getting worse. I fear this thing is killing me, but it's a very slow death and that's the bad part. I have bills to pay bit I can't hardly go anymore. I read that health care workers with SARS I had a much higher rate than nonhealth care workers of never being able to return to work. Which would make sense. I wish I could still access my articles but my computer was wiped clean. (Question #1) Is there any thought that this thing is going to just keep overtaking our systems? My doctors thought I got a hefty dose of a virulent strain of the Delta variant multiple times. My patients died. I got a big blast when my patient popped off the vent and another time when a patient popped off BiPap. We also got exposed when we had to give respiratory treatments to a man that we KNOW had Covid despite his negative test. We did not have proper PPE. All 4 of us nurses got very sick. I was also in a space about the size of an old fashioned phone booth with my coworker who kept falling out from Covid. While everyone was running to get help, I was holding the oxygen on her face and yelling at her to open her eyes and sit up because her family needed her to stay alive. I've NEVER yelled at a patient like that before. Not even in the ER. She's doing much better than I am now. Everyone is. I'm the only one who has RHS I imagine everyone gets exposed to new strains daily from people who refuse to get tested and say they just have a cold and keep exposing people. (Question #2) Wouldn't that repeated exposure be enough to keep causing reinfection or reactivation? I have often wondered if the Covid virus is hiding out in the nerve root ganglia in my ear with the zoster. I was too young to get the shingles vaccine and my family thought I did not get chicken pox when 3 of my older sisters had it and I was an infant. I was prepared to either die or get the flu working with my patients. I was not prepared for this. Living with RHS is hard enough. Anyway, thanks for "listening". I hope you can offer some insight and that maybe my story can provide some data to the puzzle. By the way, I have had asthma since childhood. Bursitis at 24. Iritis in the eye impacted by RHS at 24, a positive Rheumatoid test with that; Uveitis in BOTH eyes in 2007; RHS in 2016, then Covid 19. Sounds autoimmune to me. Always has. I always had EBV when I was about 13. (Question #3) Should I see an Immunologidt? Rheumatologist? Both? Could they offer ANYTHING? Thank you. Desperate in the United States.
Sorry, foggy... What was the proposed mechanism behind IgM depletion, again? Could it be (in large part) the continual moping up of dead cells killed in smouldering (Herpes) virus reactivation? (That Prusty talks about here.)
The proposed mechanism is just overexertion of the IgM reservoir by too much debris. I have only one issue with this hypothesis. Most of the findings on herpes virus reactivation suggest an early lytic cycle, no complete reactivation cycle. But early lysis isn't apoptotic or cytotoxic. So why should there be so much viral debris? I might not be up to date with the latest empirics, maybe I'm missing something. It's also possible that there's just a huge filter on all findings in ME/CFS, e.g. because other parts of the immune system are sensitized well enough to prevent the complete reactivation, so the immune system itself destroys the respective cells early on.
@@matfax *Cellular* debris, right? Hence auto-immunity. There's no viral structures produced, necessarily. I don't know if or how much cell death that kind of perpetual viral 'transactivation' can cause... But if there's danger signals switching all over the body into mitochondria fragmented danger mode, I imagine that might shift the threshold for cell death, or something... 🤷 And other cells (not sure of context) with permanently hyper-fused mitos, gonna cause trouble for them, too...? Although does that stop the mitos initiating cell apoptosis, or something?
@@ZeroGravitas There aren't necessarily complete viral structures formed. But the early viral proteins alone can cause havoc regardless. Prusty discovered one such mechanism in HHV6. EBV also has plenty of early proteins that have their own interactions each, disrupting cell signaling in various ways. Given the wide range of autoantibodies, I think it's likely that the immune system targets a variety of cells. Whatever mechanism involved, it's not very selective. Which doesn't mean that the upstream origin isn't selective or specific enough. It might be the immune system itself that can't properly process antigens anymore in the presence of viral proteins. With regards to the mitochondria, I'm confident that its role is overrated. It's a downstream problem imho. Unless it's specific to neurons or something else with crosscutting interactions.
Gez have you done brain retraining for your LC? Been watching lots of interviews by Raelan Agle and many people, who suffered with CFS/ME for years and decades seem to make a recovery that way.
@@2hff728 Just watching so many interviews it does seem to help or be the final thing that helps. From what I hear you need to put your all into brain retraining and often people try but don't fully commit or believe it will help? Brain is very powerful.
@@honorburza9110 I took it religiously serious for many months, to no results. I do not think it is the thing that cures M.E. Maybe it is a helpful treatment once you're already on your way out from other treatments, but it ain't the one.
I am now bedbound, fr mild to very severe pistcovid (me) in 2.5 yrs due to lack of pacing. Does thus mean that the damage on my mutokondria is irreversible???
Ihave long covid for two years in bed most time of the day. in my 60s. my problem is mostly not energy, if accumulate energy for three to a week i can have my personal hygiene if not my friend help. I do not do anything not even a cup of coffee. Reserve all energy possible i had hundreds of relapses. I had every syntoms heart paplitation, dizzine, and energy tinnitus. try all quercentin. vitimains. NAC. and nothing. best of luck hope get fully recovered soon.
Prusty admits that commenting on treatments is out of his wheelhouse as a research scientist, but does say that he finds IVIG an interesting candidate (i would think SCIG as well)
Interesting theory, makes a lot of sense now! I had Long Covid for 8 months last year and cured it with a prolonged water/dry fast, I think I removed most of the old bacteria, virus, debris by dry fasting so it can no longer reactivate and the cells/mitochondria can produce energy now. I tried many things but dry fasting eventually healed it. Cold plunges/showers helped a bit during that day, but I had to do it every day to have benefits.
I have autoimmune issues pre Covid (Hashimoto's thyroid). I had seen overall improvement by following an auto-immune protocol diet which helped a lot. I now follow a strict ketovore/carnivore diet which has really had a brilliant effect on many fellow sufferers, albeit anecdotal evidence at this stage. It massively helped my reactive airways post Covid by following a ketogenic diet. Reducing inflammation is key. Intermittent fasting and time-restricted eating also helps your body clean house. Very important in auto immune issues.
I’ve got 0 help from my GPS I take medicinal mushrooms as they are immune modulating / antioxidant / anti inflammatory and antiviral - krill oil and very high vit D3 + K2, antihistamine + montelukast quercetin zinc and magnesium- NAC ashwaganda and I’m nearly a normal person the rest I have to do by OMAD
I also want to know about the medicinal mushrooms. I keep toying with the idea of getting some but don't want to mess with my current regime, which keeps me going at least.
God bless you for this info-these are my completely ignored symptoms for over two years. I've just been at the doctors and he tried antibiotics plus steroids and it hasn't worked at all,my throat is still red,inflamed and I'm going crazy from all the secretions choking me and having full nose almost non-stop. This therapy is my new hope. P.S. And I have pretty much all of the other symptoms of long covid but at least this therapy is quite simple and cheap.
The effect size isn't impressive. It might just be a placebo effect or reduced signaling to the ANS. But there's nothing wrong about the treatment of correlative symptoms.
