Treating Autoimmunity in Long Covid & The Role of Viral Persistence | With Prof Carmen Scheibenbogen

This is the second in a three part series where Dr Asad Khan and I talk to Professor Carmen Scheibenbogen from the University Hospital Charite in Berlin. She’s a long recognised expert in the field of ME/CFS, and has recently been researching patho-mechanisms and treatments in Long Covid.

In this film we ask Professor Scheibenbogen about her thoughts on viral persistence, and how you’d go about treating auto-immunity in the context of ME/CFS and Long Covid.

Part 1:

Useful papers:

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The Long Covid Handbook (Feb 2023) by Gez Medinger & Professor Danny Altmann (and published by Penguin Books) is now available in paperback, ebook and audiobook. A singular resource that brings together everything patients, clinicians and academics have learnt about the condition to date, as well as lessons from sufferers and researchers of ME/CFS and other chronic conditions. It offers world leading expert advice on understanding, managing and treating Long Covid. It is available from the following links.

[carolenmarch]

The Germans have got their act together; the importance of once physically and economically active relatively young people now being out of work, or having a reduced capacity to work, in substantial numbers has been recognised by the treasury and medical profesdion as pressing, resulting in funding a sleth of trials. Hopefully, the UK and other nations will learn from Germany and get on board, fast ! Seems totally plausable that a disease presenting multiple heterogenous symptomology would be effectively treated by patient -specific selected drugs ( ie individualised patient medicine ). Thank you Gez for all the hard work and research to make this really interesting video when you're still struggling .❤

[rangerdoc]

She gets it. Many of us don't have years or even decades to wait on the process to officially approve treatment

[keenie]

I've been following you since 2020. I had LH after I got Delta in Aug. 2021. Fatigue as if I'd aged 50 years overnight, foggy brain and neuropathy on one leg. A year later, via the FLCC, I added LDN and within 3 months I could see a difference in my thought processing, within 6 months fatigue was better and within 9 months my neuropathy was 80% better. Thanks for your continued courage and hard work. 🙏 Following from Minnesota.

[CtDDtC]

Thanks for this, Gez. I've been following your videos since I developed Long COVID early in 2020. It was quite bad for an entire year. I would have windows about every 5 to 6 days where I didn't feel "as sick" followed by periods of illness that ranged from heavy fatigue to full-on COVID symptoms. I reluctantly got the Pfizer jab on March 14, 2021. I was in a window when I got it, and I didn't sink as deep after the window closed. After the 2nd jab, I stayed in the window and returned to baseline over about 4 to 6 weeks. My wife had Long COVID too, but didn't react as dramatically to the vaccine as I did. She did improve, but the doctor said my case was probably largely viral persistence while hers was more of a "Viral Fatigue". She is doing much better now, but still not 100%. I have contracted the Omicron variant twice since then. No return of Long COVID though, and symptoms were extremely mild.

[eugeniebreida]

Thank you for another great contribution Gez! We are fortunate to have researchers such as Prof Carmen Scheibenbogen leading research investigations/pulling the pieces together. She certainly has the right bona fides, very impressive.

[lauragott]

Thank you Gez for these interviews! You are a great champion for all us Long Covid/ME-CFS sufferers. I've learned the most from your channel. It is frustrating tho when you realize that you know more than your docs. Because of your site I am now being treated by Dr. Jordan Vaughn with anticoagulant meds. I had APS most, if not alll my life and had 35 miscarriages from it. Now with all the symptoms LC, and b4 that ME/CFS, I finally have hope that I can get better. Thank you for all the work you do while having symptom issues as well. ❤

[lovelandco]

Frau Prof. Dr. med. Carmen Scheibenbogen thank you for sharing. Brilliant analysis and eloquently conveyed. You know your subset well. Best wishes with influencing effective treatments soon. Thank you for your efforts. 900+ days and counting. Hellish 🔥. Take care and thanks again.

[jaynesierakowska]

Once again many thanks Gez. Your videos are very much appreciated.

[cindyc]

Thankyou again for bringing this information to us all! You're work is greatly appreciated!

[tonybadalamenti]

Seems like Germany has been very active in trying to solve this puzzle. I'm in the US and not getting much help. My brain is being attacked by either my immune system or viral persistence or something. I haven't had any luck on any treatment. I don't know what to do at this point.

[monag.]

Don‘t praise Germany too loud. The crowd of the long haulers here does not get much help either, and Charité clinic is doing a little study with very few people. They don’t get the fundings they would need. I am one of the many here with a bunch of symptoms, ANA antibodies l found myself and nobody knows what to do with. So l‘m on my own like all of you out there…l started strict keto in addition to all the expensive supplements l‘m taking, and if it does not help enough in a few weeks l will switch to carnivore. All the best to you all! Greetings from Berlin🤗thank you Gez!

[tennisguybri]

Good to watch all these informative videos. Not sure how doctor's yet have not figured out that this is an out of control inflammatory response in the body that causes this long covid. I was super competitive athlete prior to covid, now mega brain fog, muscle inflammation just lifting groceries into house, and malaise. All blood work CRP, CK, etc is fine. My microbiome is way off so maybe that is a role as well. I hope they can come out with a list of known medications that can target turning off the viral persistence for EBV, etc. and also a safe drug to just reset the immune system to normal again. The virus stays in the tissues and if you agitate them the system reacts again. Gez always has good info, and hopefully we can just start to get a list of medications that work correctly together. Good luck everyone with long covid. We are a forgotten group, just like many of the veterans out there. The government just does not want to fix this long covid issue.

[caroa]

Thanks Gez - excellent as ever really appreciate this. 😊

[Tiredtothecore]

Wait wait wait.. prednisone, which is a steroid, would dampen the immune system so it would help with inflammation due to an autoimmune condition, but if the inflammation that is happening is related to Spike protein or viral particles left over that are triggering the immune response and subsequent inflammation, then the inflammation is just going to come right back as soon as the administration of the steroid is discontinued.. The problem is figuring out how to get rid of the spike protein/viral particles/debris... If it's hiding out in "safe zones" within the body or within a layer of protective biofilm or whatever the case may be, we have to find a way to free it from its safe zone and in the case of active spike protein, make it vulnerable to attack by our immune system and elimination of it.. If its left over viral debris, we have to find a way for it to be "gathered up" and excreted... Steroid suppression of the immune system is not a long-term solution. It's barely a short-term solution if someone is going through a cytokines storm, I believe. But beyond that, it's just a Band-Aid and staying on Prednisone for very long creates a whole lot of very bad situations for people! Been there done that😫 All bad if used longer than for just the acute phase..

[barrycollins]

These are really helpful videos inasmuch as they show that someone is taking an interest in the condition. I just wish some of this would filter down into the real world. I've had long covid since May 2020 and the only treatment I've been offered is being told how to breathe, which I think I kind of already knew.

[Brightstartarot]

I'm a sufferer for 2 years. So exhausted and really tired of being so out of balance.

[charlotteandersson]

2, 5 year postcovid with pots, not able to work, bed 12-14 hours a day. I had to take medicine for astma, depression, pain, antihistamines and sleep. I did a lot of smoothies and other recommendation of food from nutritionist. But I still had a lot of symptoms. THEN I SWITCHED TO KETO/CARNEVORE DIET AND WOW!!! A lot of symptoms got a way and I have cut off about 90% of all meds. Fasting helps and vitamin D.🎉😊 Losing weight and mental health/ memory is better. I am still sick but a BIG RELIEF from everyday struggles.

[hff]

Thanks @Gez. Is there currently any way of testing for autoantibodies? I can't believe how hard this has been to diagnose.

[adisatosum]

H2 blocker Famotodine was a game changer when it came to reducing POTs attacks and persistent jaw and joint pain that included paralysis. I then went on to add H1 anti-histamine Hydroxyzine (Atarax) which after 3 years of insomnia/sleep disturbance allowed me to sleep most of the night. It also reduced symptoms if I came into contact with triggering foods. Sadly, for me that's now gluten and lactose (hydrogen breath test confimed) and high amounts of alcohol or chocolate (probably the histamine). I should note I gained weight very fast with Hydroxyzine and had to titrate down.

What stopped me being bed bound initially was quitting gluten and breathworks. I also support the acid based disruption theory as mentioned in this series, as I massively reduced acidic and fructose foods and feel it's dampened down symptoms and reduced irritable bladder issues. I noticed results in energy levels with Natto immediately and also saw a big improvement with D-Ribose. I can function 60-70% with both of these. As stated by many, breath works and a little light excercise accounts for a large chunk of my feeling much better. My cognitive issues still persist and I failed a neurological evaluation. I'm finding this really frustrating. Sometimes I have to leave a social event early because I can't remember words or become fatigued trying to engage for more than an hour. I had to call a painting; a square the other day, as I couldn't recall the noun for it! Only Natto has improved this a little. I'm considering looking into attention deficit medication now. Has anyone seen improvements on these? I know there's been various small studies. I also relapse badly after a subsequent covid infection. Has anyone been able to get Metaformin or Paxlovid to reduce this?
Also, Gez - your work has brought about most of my partial recovery. I rave to everyone about how thankful I am for your channel.

[Tinyteacher]

Does anyone have urine retention? I’ve had it since Covid. As soon as I go, I have to go sit and concentrate and more comes out.