Video Tip of the Month March 2024 : The Cause of Post Exertional Malaise in Long-COVID
Вставка
- Опубліковано 31 тра 2024
- Did you ever wonder if fatigue and PEM are the same or different?
Now we know - watch this clip to learn more. Here is the article I'm talking about in this video doi.org/10.1038/s41467-023-44...
For other tips from previous months, go to: www.eleanorsteinmd.ca/tipsoft...
--------------------
Dr. Stein retired from medical practice at the end of 2022 to bring everything that she learned, over 33 years, about Myalgic Encephalomyelitis, Chronic Fatigue Syndrome (ME, CFS), Fibromyalgia (FM) and Environmental Sensitivities (ES), Long COVID, and chronic pain to anyone worldwide wanting to take charge of their health and improve their quality of life.
She became ill with ME/CFS, FM, and ES in 1989. Since then, she learned that she has the full alphabet of related conditions including joint hypermobility, orthostatic dysfunction, and Mast Cell Activation Syndrome (MCAS). Her passion is to help others with these conditions and to make their journey to healing easier and faster than hers was.
--------------------
Access many free and paid resources on her website:
www.eleanorsteinmd.ca
Find her on social media:
Facebook: @DrEleanorStein
Instagram: @dreleanorstein
TikTok: @dreleanorstein
#longcovid #chronicillness #longcovidrecovery #pacing #postexertionalmalaise #dreleanorstein #covid_19 #covidresearch
This majes so much sense, i have been saying for years now that i feel like im not getting oxygen, even when im taking deep breaths! Like, i can feel like my tissues are starving for air, i don't know how to explain it. Long covid for 4 years, march 2020. Used to be an athletic, super fit, active person. Now, bed or couch most days, but try to exercise any day i feel good enough to try. Then feel like absolute garbage after for days. This is crazy
It seems like there are several things contributing to the feeling of not getting enough air including decreased blood flow to the heart brain and tissues and decreased mitochondrial function due to inflammation from the long COVID. Pacing really works. Check out my DEEP Pacing webinar - it provides some concrete strategies to gradually improve. www.eleanorsteinmd.ca/deep
It’s hard not to hate the people who did this experiment on humanity. I feel with all of my being that I was Vac injured by the hep b vac over 20 years ago but of course no medical professionals will admit it!With this malaise and ME/CFS it makes it almost impossible to get to a doctor or dentist appointment or anywhere else!Not being able to go anywhere because it completely tires you out makes life miserable! I want to do things to be productive just to have my body completely refuse to cooperate!Then people who do not have this problem just treats you like you are lazy and uncooperative!People say,”You don’t look like you have anything wrong with you!”Maybe we need to shave our heads and tie a rag around our heads in order for people to actually think that maybe you do have something wrong with you!I was finally able to get to my Dr of over 20 years this week but of course with all my problems I was late getting there just to have the office staff sitting on their throne telling me I would not be seen!I truly hope everyone of those who think they are judge and jury have every single thing I have wrong with me for just 6 months!That would be so wonderful for these judgmental people to have a major life change by finding themselves totally disabled just 6 months. I would hope once they got their life back they would treat others with dignity and respect!If I hear anyone say,” I have high blood pressure”& feel like they are just terribly sick,I’m going to scream!Let them stand up and walk to the next chair trying to get from room to room and feel like they have run a triathlon with their heart rate 140 by just standing up or just sitting up and then come talk to any of us struggling with POTS and everything else we are trying to live with!I would love to know that those who did this intentionally to all of us will soon get everything that we all have got from their toxic goo!I hope they all have it so badly that they can never leave their homes and can never get any better and more importantly know that they did it to themselves !This includes those intentionally funding this experiment against humanity!I hope if they try to commit suicide that it only makes them sicker and they are unable to kill themselves! They need to suffer for as long as possible and it would never be enough!
I feel exactly the same.
I started taking NAC with bromelain, then added the glycine. I have also added nattokinase. I have been doing better and even felt like cleaning my house again. Covid really attacked me twice and then I would get sicker around people who were recently vaxxed. You might want to look at the videos on the items I mentioned to see if this might help you. I also take quercitin. I hope you start feeling better.
@@diminudivadollhaus2097 good suggestions. NAC helps manage oxidative stress. Bromelain is a digestive enzyme and nattokinase is thought to improve blood flow in people with microclots. Quercetin is often used to calm mast cell reactions in MCAS. Thanks for sharing your experience.
Thank you 🙏
Thank you so much. As a relatively mildly affected LC patient I sincerely hope that medical science will find a way to (partially?) cure LC. Literally millions of people would be hugely grateful!
I couldn't agree more. I hosted a webinar last week by Dr. Komaroff, and it was very encouraging - so much research is being done and much of it is showing similarities between ME/CFS and LC. This means we aren't starting from scratch. www.eleanorsteinmd.ca/komaroff
What are your 'mild' symptoms? I, too, think I'm mild - but they still are significantly impacting my life. It's hard to build in 'restorative rest' everyday when I work
@@jeremywilson1970 I am very tired and I have balance problems. So I walk now using a walking-stick or a rollator, and I bought an electric trike recently. So yes, these are severely impacting my life. Although I am not exactly a young man any more (76), my wife and I had a habit of walking to the centre of our town to do some shopping, almost every day, weather permitting, or we went cycling when the weather was beautiful - up to 60 kms a day (ebikes). No problem. But now...
@@jeremywilson1970 in the ME and LC worlds we refer to severity of physical and mental energy to give a rough idea about people's capacity for function. See versions of the Karnofsky energy rating scale or Functional capacity scale for more on this. www.massmecfs.org/images/pdf/pediatric/Functional_Capacity_Scale_and_Activity_Log.pdf
Mild means people may be able to function in their full time roles but need to avoid strenuous activity and must give up social and other things to enable this.
Moderately affected can often manage part time roles and must rest more and pace well to accomplish this.
Severe means people are unable to work and need assistance with some tasks. The rest daily and are often housebound.
Extreme refers to people who are bed bound and need total care to survive.
Of course this is a spectrum and people fall all along it.
@@DrEleanorStein thanks!! Looks like I'm a 6, but think I could improve. The problem is work. Would you suggest taking time off, if possible? I'm scared that full time hours could worsen my condition and lead to cfs. Now, I do my work day, go home tired and do nothing
B vitamins are crucial for Nervous System functioning, energy (ATP) generation & digestive function, especially B1 & B12. They all directly or indirectly play a role & all support each other, however these two are major players, but many people are very deficient.
Thiamine is often lacking because the modern highly refined & processed wheat & sugar-laden diet places demands for a far higher amount of it in the body than it supplies. So, many have gone into CV already deplete. B12 can be deficient because many lack the biome microbes that metabolise & synthesise B vitamins. Even if they get enough in their diet & can absorb it, the process that converts it from inactive to active for use at cellular level may be failing at some point. And if it cannot get into the cells, it doesn’t matter how much shows in the serum test - which does not determine how much is active or inactive, only the total.
B Vitamins, along with other nutrients like Magnesium, are part of the body’s ‘stress-management’ armoury. Any stress or trauma, whatever form it takes, can rapidly deplete these crucial nutrients. We’ve all gone through a hugely stressful & traumatic period. If people were already deplete in these vital nutrients, it’s pretty inevitable that they could come out the other side in abject deficiency along with all the issues that go with that depletion.
Modern Thiamine deficiency is a whole different animal to the historic textbook versions.
This article penned by Dr. Derrick Lonsdale & Chandler Marrs who wrote the tome ‘Thiamine Deficiency Disease, Dysautonomia & High Calorie Malnutrition’ is extremely interesting.
www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/
Interestingly, one of my symptoms of low B12 was ‘air hunger’, being unable to take a full breath, & having to consciously breathe - like my ANS had ‘forgotten’ how to breathe automatically. Within 10-15 minutes of taking sublingual liquid B12 with both active forms, it, along with other (neuropathic symptoms) would subside. This symptom can also occur in acute Thiamine deficiency, too.
thank you for the information and link. I agree that ensuring we get adequate nutrition is necessary for optimal cellular and body function. And just because we eat a lot (some of us) doesn't mean we are getting the nutrition we need.
Doctor Stein - you have a new subscriber. I'd found you on Raelans channel and the advice that stuck with me as a 21 month long hauler is that if the 17th thing didn't work, try the 18th. If i didn't have MCAS/anaphylaxis reactions, id be wiling to try the 200th thing.
But this video is a gem. I needed to hear what I deep down believed to be the case right since the 2nd month of my long haul journey about the impact of the virus on oxidative phosphorylation.
I think viral persistence in the form of viral debris or intact spike proteins in huge sludge-like quantities that has shifted the body from normal oxidative phosphorylation to lactic or glycolysis type of energy delivery system.
I also think that viral persistence in the form of debris or intact spike protein in difficult to reach areas such as the CNS/Brain/ Brain stem is reason behind why patients are forced to stay with this illness longer than they would have. Nerves they say take longer to heal thus affecting the functioning of the Autonomic Nervous systems ability to cope with stress and rest and digest.
Also, are those amyloids/misfolded proteins the root cause behind microclots in the blood?
Id love to learn more from some like you who knows what we're going through and has gone through an eternal suffering for decades.
Thank you Dr Stein :).
From what I have read your assessment is correct. I just had Dr. Komaroff who is an expert in the field provide a great webinar on the deep biology of Long COVID. www.eleanorsteinmd.ca/komaroff It was detailed and very accessible.
@@DrEleanorStein Thank you Doctor 🙏. I will:)
@@DrEleanorStein sorry to bother you again but would it be fair to say that those Amyloid like substances or folded spike proteis are the root cause behind blood microclots and that together they are the reason behind PEM/fatigue/crashes? Thank you.
@@Blackpool999 The amyloid substances could be playing a role and there are other factors which may be contributing to decreased oxygen extraction from the blood including decreased blood flow and mitochondrial accommodation to inflammation and oxidative stress. It's pretty complicated and I"m sure we will keep learning more.
@@DrEleanorStein I see. Thank you for the reply. I'm going to keep looking forward to breakthrough updates on your channel.
Thank you for sharing this research❤
It's my pleasure
Thank you so much for summarising this research; it’s near impossible to read research papers with LC brain fog. Do you have any suggestions as to potential implications of this research for treatment or self-management? How do we as patients support our metabolic function?
you are so welcome. It was a very dense paper even for me. I have just launched a membership in which every other thursday I share actionable strategies in a live session to help people with LC and other chronic complex diseases improve metabolism and overall health. www.eleanorsteinmd.ca/live all are welcome.
Excellent presentation, concise with lots of information. The question now is how do we turn back from a state of glycolysis to oxidative metabolism??? Any response would be appreciated!
Jodi, that is THE question people including me are trying to answer. Dr. Robert Naviaux talks about it in his paper called the Healing Cycle. I'm very interested in hormesis as a possible answer to the question. Hormesis is our built in machinery to increase function when stressed. Checkout my other recent shorts on this topic. I go into it in more depth in my Live! with Dr. Stein live sessions.
dr stein I struck gold when I found you just subscribed thank-you
You are welcome. Now I am motivated to translate some more science on Long COVID. Stay tuned.
This rings true to my experience. Dr Patterson’s work agrees with this as far as viral remnants
Listening to Dr. Komaroff's webinar on Long COVID teaches me this viral remnant theory is gaining traction. www.eleanorsteinmd.ca/komaroff
I was under Dr. Bruce Patterson’s direct care for at least six months. I did a ton of blood work, video conferences and took outrageously expensive medications. We got my numbers in the bloodwork to near normal, but my condition remained largely unchanged. That was a year ago and my life is still in ruins. I hope someone comes up with something that works because I’ve pretty much given up hope. I hear so many different opinions as to what supplements will help. I’ve tried everything.
@@lowandslow3939 I got sick 36 years ago and spent hundreds of thousands of dollars on fancy tests, supplements and treatments. I've seen a lot of protocols come and go. And then I got better ... and what helped me was good self care and for me a diet change that allowed my immune system to calm down. So now I'm teaching more of the basics, things we can do ourselves - that put us in charge that don't cost a lot of money or require referrals to expensive specialists. But my biggest message is not to give up hope. If I can get better after 27 years, anyone can. Keep an open mind and do what you can. Things can improve.
@@DrEleanorStein Thanks for the kind words. I’m concerned about the possibility of permanent damage. I’m just sick and tired of being sick and tired.
@@lowandslow3939 I hear you about that fear. I never thought I would recover .While there are exceptions to every statement, in general I have found the human body to be amazingly resilient and many people improve when they get the combo of management strategies right for them. And sometimes that involves giving up the chase for a while and letting the nervous system calm.
So is this mitochondrial change reversible and how?
Yes, my read of the literature is that the mitochondrial changes are not damage but rather a normal response on the part of the mitochondria to being stressed by what is going on eg. Long COVID, inflammation, infection, activity etc. They are made to respond to these things in ways to protect us until times are better.
Could you add a link to the article into the description?
good suggestion, I just added the link to the article and will do so in futre.
Móviles en la primera fase cree que es mejor mover el cuerpo poco a poco?
en Espanol: Estoy de acuerdo contigo. Utilizo el término "pequeños pasos" para describir cómo moverme hacia adelante.
in English: I agree with you. I use the term baby steps to describe how to move forward.
Ugh. Its been a year now and in some ways I’m much worse with post exertional malaise
that's tough. Luckily, the research suggests that people can and do recover from long COVID albeit slowly. The more you know the more things you can try and the better your chances of recovery. I have lots of free resources and videos on my website to help.
In people who are vaxed and also get covid infections how would you know for sure which of the two are causing the symptoms. Has research been done to find out?
that is a great question to which I do not know the answer. I know there has not been enough study of vaccine injury. If we don't study something we can't know for sure if it is a problem or not.
If breathing has nothing to do with the abnormalities, why do long covid patients have such a hard time breathing?
Many people with long COVID have residual lung problems which affect breathing. For others with healthy lungs, there is evidence of decreased oxygen delivery to cells because of mitochondrial dysfunction and left to right shunting due to autonomic dysfunction. This makes people feel out of breath and they breathe harder to compensate. The increased pH as a result of the hyperventilation results in even less O2 moving from the blood to the tissues resulting in a cycle of more breathlessness and so on. This is the theory proposed by Dr. Joseph and Systrom of Harvard based on invasive cardiopulmonary exercise testing.
Thank you so much for this video. I would like to ask if you have heard of MCAS (mast cell activation syndrome) as I used the advice for that and really improved. I think I have had covid again recently though and am back to square one. Still optimistic however.
Yes MCAS is very common in the community of people with chronic complex diseases and getting COVID can activate it - make it worse. So managing MCAS is a good strategy.
As a trained & certified Covid Tracer and Advisor I'm concerned this study is very small.
I also note from the statistics that the only people suffering long Covid are fully vaccinated. Studies need to look into what's causing this from within the vaccines.
both excellent points.
This is important.
But I believe, it is enough theoretical research. We want official protocols and methods of recovery, funded by the insurance 🫠 paid thousands and thousands of euro's, could probably have bought a house already if I wasn't sick.
I couldn't agree more. The first step is understanding what is going on at the biological level so that treatments can be developed. that development is not happening fast enough.
Hello I have long Covid , no day is the same .but back in the early 80s I had ME this was very different from longcivid as it was virtually the same everyday , it took 3 yrs to get back to normal, hoping the
Same for long Covid cheers.