How Long Will Treatment Trials Take? And Why is Research so Hard? | With Prof. Carmen Scheibenbogen
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- Опубліковано 15 чер 2023
- This is the final film 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 talk about how long it might be before we can expect to see effective treatments getting through phase 2 and phase 3 trials, and why it is that getting this research done takes so long.
Part 1:
• The Two Types of Long ...
Part 2:
• Treating Autoimmunity ...
Useful papers:
t.co/egnAViboZP
t.co/8ftXIciwmw
t.co/tIETiRO56w
t.co/reps2yZ6hy
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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.
US: a.co/d/0gvkJCU
UK: amzn.eu/d/9KjurGb - Наука та технологія
Thank you Gez for this series! It’s good to know that there are still people out there working on help for us! I feel like I’ve spent a ton of money this year proving what my symptoms aren’t.
I got a blast of truth at 9:38. I now can accept that while I see other folks with PASC getting better, that might not be in the cards for my husband, as he more than meets the criteria for ME/CFS. I want to thank Dr. Scheibenbogen for stating her observation about this. Of course, there's always hope for the future, but we were hanging our hat on hearing about others who had recovered after a year or two. It's grief-inducing, but grieving is much easier when one knows what one is grieving over.
Thanks for putting this excellent three part series together Gez, such a refreshing contribution to the conversation... although it is indeed scary to think the timelines for LC/ME/CFS studies continue to be so protracted.
It is so frustrating :(
Thanks to this womderful academic and her team rhe gao narrows for finding meaningful diagnistic gruopings for LC , diagnostic testing and pitential drug treatments . You now just need ti send your primary cate physician this video . Huge thanks to Prof Scheibenbogen and Gez ! 😊
Having been hit really hard by Long Covid since my spell in intensive care with Covid in March 2020, I asked my doctor a couple of weeks ago if there had been any developments in reserach to assist with my lack of proper lung function and significant loss of cognitive funtion, he simply said, "No, long covid isn't a sexy subject anymore and the medical world has moved on." That's nice then.
It’s also frustratingly accurate
Thank you again, Gez, Dr. Khan and Prof. Scheibenbogen.
It would be nice to have an interview with Prof. Schieffer, University of Giessen/Marburg (Germany). He shows - in addition to Post-Covid - a lot of engagement to diagnose and treat Post-Vac sufferers. As cardiologist, he focusses RAAS. Very interesting.
Thank you so much great video as usual. Isn’t there any way we can find to help push trials along? So frustrating!
I have had ME/CFS for the past 30 years (ICC criteria), POTS, Fibromyalgia (since early childhood), Hashimotos Disease, Chronic Lyme disease (since the early 1980's), and Long Covid (from my 1st episode of getting Covid in 2020. I am 68 years old and have not been able to find a doctor that has any knowledge of any of this where I live in Spring Hill, Florida USA. So, it's not just a matter of when will there be any meds to treat Long Covid, ME/CFS, POTS, PEM etc., I don't have access to any doctors who is willing to educate themselves and be willing to take me on as a patient. Medical care is so horrendous here and the for profit hospitals are absolutely horrid.....not caring about their patients, nor their employees who are miserable....only caring about the almighty dollar. So this is all apart of the ugly picture for everyone in my shoes. I have been housebound and recliner/bedbound for over 9 years. Each time that I go to a medical appointment now (especially to an ER and hospital admittance) I become permanently worse. I have no doctor to turn to for help. This isn't living. It's merely existing and is a living death. I am only holding on by my fingernails in the hope that I will get some compassion and help someday.
I am so sorry to hear all this :(
I also have lyme and long hauler I will be contact my old lyme dr again as he shut down for covid I take many supplements which have helped will be looking into a dr in ct usa who helps chronicly ill people I hope you will find a cure for this horror I hope you will find yourself running walking and feeling joy again in your life! god bless i will pray for you
Thank you Gez for another informative podcast - I can highly recommend your book - its my long covid bible. I have to say, after 3yrs I personally have plateaued re all my long covid symptoms. I genuinely don't think i will ever improve on where I am and thats not being all doom n gloom its more a case of acceptance and forging a head with a new way of being in life.The more you fight this thing the more frustrated you'll become leading to stress causing unnecessary fatigue ... This is what happens to me - I have limited tolerance for stress so i just try and - Let it go 🎈
3 years here also. I’m starting to make my way to your way of thinking. Been fighting to get back to where I was, but it causes stress and makes everything worse.
@@Richexperience1 I couldn't agree more - it's horrendous isn't it and we have to genuinely mourn for our previous lives but it's the only way forward - Thank God for Gezs podcasts and this community 🙏❤
I needed to hear this. I'm at 2.5y and accepting I need a wheelchair is the kind of positivity I need - not hoping I might make a full recovery some day, it's better to be happy and accepting of where you are now, not wishing away your life ❤
Have you tried ArtemiC Support ua-cam.com/video/B2kRGUuk7Wk/v-deo.html
Long Covid 30 day ua-cam.com/video/B2kRGUuk7Wk/v-deo.html or
Long- Covid 32 day combo treatment ua-cam.com/video/CxibS0mPRO4/v-deo.html
@@Richexperience1Same here also! 😔😭
I am so horribly stressed over my condition. In my instance it’s MCAS and so I have food sensitivities/intolerances. Back and forth between low dose Prednisone and inhalers to help with my debilitating breathing issues now. Wake multiple times during the night to a feeling of an Elephant on my chest and breathing thru a tiny straw. Wheezing, hard to even take in a breath, so I guess that would be labored breathing. These are my worst symptoms. My husband and I were hiking mountains last year even tho I had already been sick with LC for over a year. I don’t know how I did it, but I’m definitely worse now even a year after that and can’t hike, can’t even go for walks anymore! 😭I’ve been sick now for 2.5 years. My husband recovered fully from Covid, I didn’t. He got a fever, I never did. I think that’s important to note also. Because I also have Chronic Lyme and I guess the bacteria hinder you from getting fevers so as your body is not able to kill it off! 😑
AXA1125:
Leucine - 1.00 gram
Isoleucine: 0.50 gram
Valine: 0.50 gram
Arginine: 1.81 grams
Glutamine: 2.00 grams
N-Acetyl-Cysteine: 0.15 gram
The first three can be found as BCAA in the correct ratio.
Helpful - thank you!
Struggling to edit the above post for some reason. Subjects were given two x 33.9g doses of AXA1225 daily in the trials.
@@ThePoppy74 So howmuch BCAA does the 33.9g doses of AXA1225 equate to? (of the first three ingredients of course)
Thank you Carmen, I’ve watched quite a few of your presentations, thanks for continueing to have an enquiring mind
Well done Gez! ❤
I have a autoimmune disease and have had long Covid for the last seven months. I am desperate for help because it has taken away my cognitive abilities and gives me super anxiety as well. Numbness, weakness, and overall I just feel like I’m going to die. It’s awful and I hope treatment will become available sooon!
I’m so sorry to hear this Cheri :(
I’m also from Germany, she said that before that we need like 2 years for research, but it was one year ago when she said it.
Thanks Gez and Asad for this great interview series! I´m wondering if the increase in anti-b adrenergic receptors might be a compensatory effect of lower perfusion due to microclots. That would explain why symptoms return after a few months. Probably combining antibody immunoadsorption and triple anti-coagulant therapy would do the trick.
It's funny she mentioned an amino acid because amino acids are the only I found that helped my fatigue. When I forget to take them for a few days, the fatigue comes back, not quite as bad as it was when I first had it but it's still very debilitating. I use full spectrum amino acids.
Love amino acids. Mine focus on anxiety and heart palpitations. Taurine. But do your own research of course
Very timely subject for me, oy!
Thanks again for another great mini-series. Great to meet you last weekend at Cheltenham Science Festival - a fantastic 'talk' raising awareness. And they say never meet your heros, but in this case it was that definitely wasn't the case. 😊
Haha, that’s very kind of you Rachel! Was great to meet you too ☺️
@@RUNDMC1 Apologies for the 'gushing'! 🤣
@@user-ds2bz3hn5z that’s alright, wouldn’t have described it as that! :)
😅
There is already a treatment for long covid it's called self employment.
thx for your great work !
Are there any news about enzymes like nattokinase, serrapeptase? I remember there should be a trial running.
Thank you
Thanks Gez for you're continued hard work and all the people out here working hard to find a cure . Us people really appreciate it , it's refreshing to know there is at least people that understand what's going on and not blind sided to it like alot of these doctors are . I've been to numerous amounts of doctors I just gave up , is there anything over the counter we can buy to help reduce the inflammation in the throat and in the chest ? I've went to a low histamine diet hoping it helps some . ❤️❤️
I’d try H1 and H2 antihistamines if you haven’t already?
@Gez Medinger what antihistamines do you use ? I've tried Allegra D and pepcid but feels like Allegra D isn't working very well . Thank Gez I appreciate you so much ❤️
@@hollyeverhart9348I had some improvement taking Hydroxyzine.
@@hollyeverhart9348 I’m on fexofenadine and famotidine :)
@@RUNDMC1 thank you so much ! ❤️❤️❤️❤️
What's the article or paper in the german physician Journal, which is recommended to take to your doctor?
There is one thing I dont understand or what makes me very bitter. For HIV so many Galas and concerts were performed to rais money why not for the Long Covid Me/cfs crowd?
Because no one cares about us. Sad but true. Most doctors think we are simulants or psychos. I developed post-vac with me/CFS 2 years ago, and believe me, most doctors do not realize that this is actually an illness with physiological cause.
It took years to be fair
Because ME/CFS only kills you metaphorically.
@@RUNDMC1 People die from ME/CFS! Either directly from it because they are in the very severe stadium and the body completely shuts down, or as a consequence of the increased risk of having a stroke, heart attack, cancer, etc. And let's not forget the many people that commit suicide because they can't cope anymore with the hell they are living in and the lack of medical support. You should have asked Carmen about that. Death from ME/CFS is a reality.
I think because there is a test for HIV, and LC and ME are always doubted to be "all in your head".
thank you Gez
Ive had strong symptoms of bloodflow issue in hands and feet throughout with ‘covid-toe’ even in summer in hands and feet as well as me/cfs, OI, POTS, MCAS etc. Propanolol has helped. I just wonder whether propanolols influence on b2 adernergic receptors might have interrupted/interfered with the autoantibodies on these same receptors? I feel excited to maybe know the mechanism behind why this is helping rather than just being grateful it is.
GENETICS RESEARCH? Thank you so so much both Gez and Carmen! I'd be really interested to know more about how genes play into all of this. I have had my genes sequenced and done a lot of research into it and am finding a lot of clues as to why I, as opposed to others, was afflicted with LC. Perhaps something to get your teeth into if you haven't burnt out completely by now. Take care of yourselves.
Which genes do you think?
Hope soon
An other question for Gez would be, what do you think of the FLCCC long Covid Suggestion for Treatments ?
Greatings from Cologne !
Thanks Luise!
Reminds when they first were able to use germ theory, microscopes to find the different causes of lung disease that were originally all under " consumption".
Thank you for your videos. I struggled to hear what drugs the Professor said existed to help ME/CFS? I listened several times but couldnt make it out. Are you able to help please?
I heard Mestanon, ivabradine, abilify & low dose naltrexone.
@@llamazoo8724 Many thanks for that Llama.
@@llamazoo8724 low dose abilify
This gives me a tiny iota of hope. Also thanks to everyone involved, from myself, personally. Sad I've been so unwell, that I am way behind on this channel.
So at the moment is a big problem with getting everyone in a matrix of a diagnostic for proper treatment. Multiple mechanism give the same disorder but different treatment.
Hello and good day. If a disease worse than HIV/AIDS were to come along how would it compare to COVID/Variants please ?
Ashamed that we have to be our own guinea pigs. Im currently self trying low dose doxycycline at 25mg every other day. Since it can calm microglial over activation without affecting gut microbiome.
I used 200mg two times a day. Only this helped me ...
But thats an entirely different mechanism than what im trying to accomplish. Im not trying to kill bacteria.
@@baileystruss7319 What are you trying? Thnx.
..Trying to reduce neuro inflammation. Specifically microglial immune over activation. There is some research that low dose doxy or mino can help.
@@baileystruss7319 But 25mg is too low I think :/
My worse symptom is nausea and vomiting I take anti nausea med other symptoms like headaches heart palpitations which have slowed down dizziness and fatigue I have to pace because if I do to much when I feel a little better I end up crashing with all symptoms any suggestions for the nausea.?
Is some video about reactivation latent infections/ viruses? I think is very important part of Long Covid. I know hundreds people and they have reactivated Lyme, EBV, CMV, chlamydia, HSV1/2 etc....
Yes, I have EBV reactivated but there is no treatment for that either. At least not here where I live
What about acyclovir?
@@barkingsquirrel7166 Did you try it?
Are these symptoms recurring in “vaccinated” individuals?
@@kateroyston9416 both. So yes.
Speaking of Antihistamins, Gez are you still on those? What protocol are you actually following?
Yes I’m still taking H1 and H2. No specific protocol
What drug are they trialing?
Amazing how quick it was to get a vaccine researched and into people's arms. If only we had waited and done all the normal checks!
Not quick at all. Research on that was started in the 1960s.
@@bruceharkness4497 MRNA was first experimented on in 1987 in what was described as a "molecular stew." Used in animals for some years now but not humans until Covid 19. It had been the hope of big pharma to find a "human" use for all the research and Covid 19 provided that opportunity. Those who refused the "vaccine" I think probably dodged a bullet.
On Coronavirus tho?
Yes! And with the premise that they were ‘saving lives’ !!! If only they were as keen now to throw billions of taxpayers hard earned cash into this research! Fundamentally to doing the same thing… save people’s lives!
For bigfarma quik vacines,quik money.......
So if antibodies are potentially a problem, could currently circulating less virulent versions still cause a higher negative effect by stimulating higher levels of those same antibodies?
It’s autoimmunity that’s the issue - not the antibodies made to combat sars cov 2 infection
@@RUNDMC1 I might be mistaken but don't a number of autoimmune conditions involve antibodies attacking the human body? Lupus for instance.
@@epicchannel4724 that’s exactly what they do. Point being these are not the same antibodies created to tackle the initial infection (although lupus generally not infection triggered)
@@RUNDMC1 I had believed that part of the problem was that the spike protein had areas that resemble human protein creating antibodies that attack those areas. I have read resemble that claims that it particularly had protein resemblance with protein found in female Uterus and placenta. You may remember the mass reports of women on mass reporting period problems.
Also we have studies showing antibodies induced by synthetic spike causing MS. The WHO actually published those cases.
Gez, I'm curious, how's your long covid recovery going?
Been 10 months. Overall, a lot better but still have slightly high inflammatory markers which lead to more aches & pains & seemingly higher risk of injury, despite being relatively young.
Slower than I’d like
@@RUNDMC1 what are your most troubling symptoms still if I can ask? Thx
@@FirstnameLastname-pe5ibwhat symptoms do u still have
@@RUNDMC1hi Gez, what symptoms do u still have
Push!
what was the amino acid trial she mentioned?
AXA1125
So basically AXA1125 could be ready in about a year or some more? I was hoping the timeline was gonna be faster 😢
You can make your own version of the amino acids combination - just look up the specific ones and quantities used. It’s definitely been discussed on twitter
Oh ok I will try. I mean if the studies so far show that it works, it is worth trying
I didnt find the thread on twitter but I will look up de composition of axa1125
IVM
What do you do when you are so severe you can't risk visiting the doctor ?
To them, there is a real risk of triggering such a brutal crash that, it would not just worsen symptoms, but lower their energy envelope permanently... literally, for the rest of their lives!
if the politicians donot take the lead and remain captured by the pharma industry, pray for the people who will continue to suffer from long covd.
oxazepam and physical therapy
She said a lot of people are recovering. Feel like it's half at most.
When there’s 150 million people worldwide with LC, half is a lot!
@@RUNDMC1 Insane to imagine that number, eh?
@@RUNDMC1 Yeah but what about RELAPSING from re-infection? Randomly relapse not reported or recorded? How do you determine true recovery?
🤘 Promo*SM
Nothing new same old same old
It's getting that way isn't it. More research needed... Been three years. If an asteroid was coming to wipe us all.put they would have a solution very quickly
In other words, very little to nothing is being done. And pharmaceutical corporations are not interested in pursuing due to the lack of profit revenue & investment pay off.
Long story short. We will continue to suffer with no legitimate help.
Thanks for the videos though, you all are good people.
I had a strong case of Longcovid with fatigue😂 but after using the ArtemiC Rescue and Support combo treatment it has completely gone away.