TWiV 1029: David Tuller on Long COVID and ME/CFS
HTML-код
- Опубликовано: 27 ноя 2024
- David Tuller returns to TWiV to provide an update on ME/CFS, the PACE trial, developments related to the NICE guidelines, and how similar practices and ideologies are being applied to long COVID.
Show notes at www.microbe.tv...
Become a patron of TWiV at microbe.tv/contribute
----------- CONNECT -----------
🎯 Subscribe! bit.ly/2HOYdNP
Instagram: @profvrr and @microbe.tv
Twitter: @profvrr
TikTok: / microbe.tv
Facebook: / thisweekinvirology
Our Podcasts: microbe.tv
Contribute: www.microbe.tv...
----------- MORE VIROLOGY -----------
•My Virology Course virology.ws/co...
•Virology Blog: www.virology.ws
•Virus Watch bit.ly/3ngvQIM
•Principles of Virology textbook amzn.to/34onDtg
----------- OUR SCIENCE PODCASTS -----------
•This Week in Virology bit.ly/30uUhrX
This Week in Parasitism bit.ly/3ndUNUZ
•This Week in Microbiology bit.ly/33tOUeO
•Urban Agriculture microbe.tv/urbanag
•This Week in Evolution bit.ly/3ne1bf5
•Immune bit.ly/2HOyCVb
•This Week in Neuroscience bit.ly/2So12Yd
•Infectious Disease Puscast bit.ly/3K4EKF0
- Who Am I? -
I’m Vincent Racaniello, Earth’s Virology Professor.
I’m also a professor of virology at Columbia University in New York. I’ve been doing research on viruses since 1976, and teaching virology in classrooms and online since 1999. On this RUclips channel I share videos of my lectures, podcasts, and more.
New videos are uploaded several times each week.
I do not run ads on our work as it is disruptive to learning. We depend on your support.
If you would like to support our work, go over to www.microbe.tv...
-----------------------
#microbe #viruses #coronavirus #pandemic
-----------------------
As an ME/CFS patient, David Tuller is my hero! He has done more to dispel myths and debunk fraudulent studies than anyone else in the field! 🙌🙌🙌
My favourite TWIV episodes are with David :) the ME/CFS community is very lucky to have him. The Dr Fullilove episode great too.
This is what happens when psychiatrists hijack unexplained biological diseases and claim them to be behavioural.
34 years with ME/CFS for me after never recovering form influenza
It's one of the most neglected diseases for its burden on society and suffering for the patient. Severe flu like symptoms that come wave after wave for life! Like a bad hangover and poisoning sensations. Visual and audial sensitivity (i.e pain). Muscle weakness, cognitive impairment, extreme debilitating fatigue, memory, loss shortness of breath, Internal tremors, Orthostatic Intolerance etc. For the CDC to name it in the 1980s Chronic Fatigue Syndrome was an utter insult.
People who have had chemotherapy then later ME/CFS say the symptoms are nearly identical.Except with ME/CFS if you exert yourself even a tiny bit you end up with even worse influenza like symptoms, all symptoms become unbearable.
Graded exercise and being gaslit by a psychologist does not improve a physical disregulated immune system. In fact it worsened me and many others as it kept triggering crashes.
Yep, I had chemo and later long Covid. They feel very similar, brain fog, memory problems, neuropathy, smell loss, and the unending numbing fatigue.
They hijack it becose they are the only one who could help, no one can help you with a damaged brain and dysregulated nervous system.
For me CFS/ME main problem is reduced blood flow in the brain and some sort of fibromyalgia in the head, it's definitely a body safe system which does not turn off.
Probably because the frontal cortex where the mind live is in a constantly in a state of alert.
With, Love, Mike
Psychiatrists hijacked ME/CFS, therefore it is not a disease but a diagnosis with an unknown cause of illness who often have psychiatric symptoms.
There are several conditions that can cause ME/CFS. The recently discovered Mast Cell Activation Syndrome (MCAS) is probably the most common cause.
Article Psychologytoday
• Mast Cell Activation Syndrome: An Alert to Psychiatrists
Articles NCBI
• Mast cell activation symptoms are prevalent in Long-COVID
• Immunological dysfunction and mast cell activation syndrome in long COVID
• Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases
• The Emerging Role of Mast Cells in Irritable Bowel Syndrome
• Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrom
• The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome
• Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (ADHD)
• Mast Cells, Stress, Fear and Autism Spectrum Disorder
• MCAS: what is Mast Cell Activation Syndrome? - Online interview
• The Role of MCAS in Long Covid With World Leading Specialist Dr Lawrence Afrin
• Involvement of mast cells in modern life: Physiology and pathophysiology by Prof. Dr. L. Afrin
• 2022 Conference Dr. Maitland "Neuropsychiatric Manifestations of Mast Cell
@@mihakavcic7237 Psychiatrists are rarely of any help to those with an ME/CFS diagnosis.
More and more psychiatric disorders turn out to have a physical cause, which psychiatrists are often unaware of.
What a disservice, no doubt.
I will share my story for what it’s worth. Please be kind, as it’s not an easy story to tell, or worse to live with, with my dignity. I was a premature baby in a broken home and all that poverty subjects you too. I contracted Mono at 12. It flipped my life upside down for the 3rd or 4th time. My first round of it lasted 9 months. I can’t say that I ever got through it. I was just never the same. Then had mono two more time; lasting 3 months, and last infection, two weeks. Three infections from age 12-14. Changed my life and not for the better. I was kicked out of school and then out of my house to never return. My fundamental Christian parents wouldn’t understand and my school couldn’t understand. Bias from family and friends, doctors and institutions nearly destroyed me before I could even enter the world. Chronic fatigue, lack of concentration , short term memory and much weirder, night terrors, out of body experiences and sleep paralysis. Strange neurological symptoms, most of which I couldn’t even speak of due to being prejudiced before I walked into the doctors office. I was seen as being “depressed” but didn’t feel depressed…just no energy, cold to the bone, or way too hot and every storm front and high pressure ridge in the winter and summer clobbered me. Even full moons trigger symptoms. You don’t dare say that? I survived somehow; strong will, kindness from strangers, and a grandfather who didn’t doubt me. I got my GED, then got a degree, became an archaeologist which I could only do for a few years in the field. I just had to stop after falling on a mountain side in severe heat. It was akin to hitting a wall. Nearly 27 years later of going to doctors and disability. At 51, a doctor who finally didn’t doubt me, ordered an MRI w/contrast, then a spinal tap. She diagnosed me with MS. I have been suffering for a long time but was seen as just suffering “malaise”, then diagnosed with Reiter’s Syndrome in my mid 30’s…..can’t see, can’t pee, can’t climb a tree! Don’t really know since the lesions were found.
Symptoms from my my teens, then twenties. I wasn’t listened to. The symptom that should have that rang bells was a sensation that my chest was being severely squeezed. I never knew what it may have indicated.I am the walking wounded.
Thanks for highlighting this Vincent. You were my lighthouse in tye storm of Covid as it’s frightening what what a virus can do and I felt so vulnerable being on these monoclonal therapy for MS. I hope this recognition spreads. I am only here today and able to tell my story because I met a wonderful women, an angel in the desert who believed in me, loved me, married me, which allowed me to see doctors although I had given up getting answers. She organized one more try at finding some kind of answers. I’m one of the lucky unlucky. Most in my boat don’t ever get any kind of answer or are loved despite it all.
Thank you for sharing this.
I read your story. God bless you❤
Three years plus of chronic fatigue from Long Covid. Thanks for standing up for us, since we can't do it for ourselves. 😉👍
I've been reading about Red Light Therapy. The long light waves penetrate the tissues and get the cells to create melatonin and with good rest rejuvenate the mitochondria. There may not be a silver bullet. I'm taking 12 supplements a day they help. Get that immune system back into neutral.
I'm shocked that studies funded by disability insurance companies would show results that people with long COVID just need to get back out there and pull themselves up by their bootstraps.
Shocked I say
Indeed shocking and appalling
They've been doing this for over 50 years... I fail to see what is shocking
@@polyanthesis I see why, because its shocking behaviour and is understandably shocking to new people only just finding out about it.
Lots of things are shocking for healthy people that have never needed to rely heavily on insurance or government assistance due to health problems.
Hilarious that not one of the four responses before mine failed to catch the sarcasm in your comment!😂
I know a couple people with LC. One had severe fatigue, POTS and severe joint pain. Formerly a very active person. She took Methotrexate and Prednisone for the joint pain then after her vaccines was able to stay off the medications without recurrence. The fatigue/POTS took longer but she did very gradual re-introduction of activity and a very clean diet. Now three years later she’s about 80% better
The other person is a middle aged physician. Mostly the fatigue and brain fog but so severe that he had to retire. Still trying various treatments to recover
I'm also over 3 years into Long Covid / ME/CFS. Ironically just a month before I got ill with covid I started binge watching MicrobeTV episodes. Never thought at that point a virus would have such an impact on my life too.
@@RiDankulous thank you! Yes, this illness makes you feeling like being buried alive and poisoned at the same time. Never thought something this horrendous exists before it got me.
@@phxx3054 You may have Mast Cell Activation Syndrome (MCAS).
A recently discovered disease in which dysfunctional and hypersensitive Mast Cells can cause all the symptoms and triggers including PEM that are known from ME/CFS.
Gez Medinger
The Role of MCAS in Long Covid With World Leading Specialist Dr Lawrence Afrin
Love David Tuller, he’s been fighting for M.E/CFS patients for years. Was fortunate to meet him at Oxford, UK pre Covid.
What I think was missed was that parents refusing Graded Exercise Therapy for their children faced social services investigation - absolutely disgraceful to force kids to do something that was known to make them worse! Thank goodness NICE listened and changed ‘treatment’
Daughter has had severe M.E for 8+ years so far. Hoping Long Covid sufferers push for biomedical research.
Thankyou for your work David & Vincent…your dismay makes sense to me as I’ve read much on the issue and I understand where you’re coming from…long may you contribute in this field of enquiry
Same here. Going on 3 years. Came on immediately post covid infection. All the symptoms including some acute damage like lung scarring. Severe fatigue and pots, nerve issues and peripheral neuropathy, shortness of breath. I never had depression or anxiety and had severe bouts that I believe are imbalances as there are other dysfunctions that mimic other diseases and conditions from rheumatoid to diabetes, Parkinson’s etc. Everything seems to be out of balance causing the cascade of symptoms.
I contracted the damn disease in the SFO airport, 03Feb2020. And, I ended up with long Covid too. I went through chemo for cancer in 2012, and a lot of the neurological symptoms were similar, including the peripheral neuropathy, balance issues, loss of smell and memory problems. I'd cured my neuropathy previously with vitamin B12 and 15 g of glutamine daily. It worked for long Covid neuropathy as well, only taking three months. The memory problems didn't clear up though, until my first mRNA vaccines in April of 2021. And the lower lung damage took 2 1/2 years to repair. Hope you are fully recovered soon. If your neuropathy hasn't cleared up, please don't let them put you on Lyrica. I've seen that drug totally destroy a friend's nervous system. Try glutamine first, it's cheap and effective.
@@deborahfreedman333 thanks for info. I have not seen a neurologist thinking that part would just be a slow healing. Good to hear you worked that out!
Years before Covid, my daughter who was twelve at the time had a virus while we were traveling and got quite sick. She was left with brain fog, Postural orthostatic tachycardia syndrome (lasted eight months), headache, and overall body weakness and various body aches. She had to switch to homeschooling as a result. Everything but some brain fog and the 24/7 (NDPH) headache left her. She’s received multiple headache treatments including pain killers, which didn’t touch the pain.
I would love to have some guidance on where we might be able to take her to get her help? Thanks so much in advance for any direction you might be able to provide. She is starting college this year and I’m hoping to get her some relief. She has suffered for seven years now.
Hope this can be of help.
Your daughter may have Mast Cell Activation Syndrome (MCAS).
A recently discovered disease in which dysfunctional and hypersensitive Mast Cells can cause all the symptoms and triggers including PEM that are known from ME/CFS.
Articles NCBI
Mast Cell Activation Disorder and Postural Orthostatic Tachycardia Syndrome: A Clinical Association
The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome
The role of mast cells in migraine pathophysiology
Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrome
The Role of Mast Cells in Irritable Bowel Syndrome
Article Annalergy
Symptoms of mast cell activation
ME/CFS is a diagnosis where you have certain symptoms including psychiratic symtoms, but the cause of the symptoms is unknown. That is why Psychiatrists are so interested in ME/CFS.
Most people with ME/CFS probably have Mast cell activation syndrome (MCAS) as an underlying disease for their ME/CFS symptoms.
MCAS can have all the symptoms and triggers known from ME/CFS including PEM.
MCAS is a very common recently discovered mast cell disease where dysfunctional and overactive mast cells release too many chemical mediators.
Mast cells are a white blood cell that is an important part of the immune system that can release more than 1000 different types of chemical mediators.
Symptoms depend on which of the over 1,000 mediators are released, how much of each mediator, which combination of mediators and where they are released in the body.
The symptoms MCAS can cause are more than incredible.
Many of these mediators are inflammatory, others control bodily functions. Mast cells are found in all tissues of the body, including the brain.
The cause of MCAS is probably a mutation in the KIT gene as in other Mast cell diseases such as the rare Systemic Mastocytosis.
Those with MCAS may have had the disease all their lives without feeling ill before a trigger such as viruses, bacteria, mould, physical or mental stress, poisons/toxins and heavy metals triggers the disease.
There are many different medications that can make most people with MCAS better.
Some diseases that are often associated with MCAS.
• Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
• Post-Lyme syndrome
• Long Covid
• Post-traumatic stress disorder (PTSD)
• Gulf War Illness (GWI)
• Irritable bowel syndrome (IBS)
• Fibromyalgia syndrome (FMS)
• Postural orthostatic tachycardia syndrome (POTS)
• Hypermobil Ehlers-Danlos Syndrome (hEDS)
• Multiple chemical sensitivity syndrome (MCSS)
• Chronic inflammatory response syndrome (CIRS)
• Interstitial cystitis/bladder pain syndrome (IC/BPS)
• Attention-Deficit / Hyperactivity Disorder (ADHD)
• Autism spectrum disorder (ASD)
Scientific articles NCBI
• Mast cell activation symptoms are prevalent in Long-COVID
• Immunological dysfunction and mast cell activation syndrome in long COVID
• Mast Cells and Irritable Bowel Syndrome (IBS)
• The Emerging Role of Mast Cells in Irritable Bowel Syndrome
• Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrom
• Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases (Psychiatrists should read this article)
• The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome
• Mast Cell Activation Disorder and Postural Orthostatic Tachycardia Syndrome: A Clinical Association
• Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (ADHD)
• Mast Cells, Stress, Fear and Autism Spectrum Disorder
• The role of mast cells in migraine pathophysiology - PubMed
• Recent advances in our understanding of mast cell activation - or should it be mast cell mediator disorders?
• MCAS: what is Mast Cell Activation Syndrome? - Online interview
• The Role of MCAS in Long Covid With World Leading Specialist Dr Lawrence Afrin
• Does Mast Cell Activation Explain IBS (and Fibromyalgia and ME/CFS)?
• Small Intestinal Bacterial Overgrowth Is Common in Mast cell activation syndrome
• Mast Cell Activation Syndrome: An Alert to Psychiatrists (Psychiatrists should read this article)
this might be the biggest medical scandal in "recent" history
Yes as the fraud affected everyone in the world with ME/CFS and now Long Covid
I had bronchitis in my early 30s and it took long time to recover and everytime I have a respiratory infection or inflammatory process I have bronchitis again which I am now suffering after 10 days getting infected with SARS 2 .So I am worried this will linger for months. I feel very winded
we are seeing an uprise in auto immunes .wether they existed earlier & not recongnised remains a mystery.
I just wish they could first come up with a reliable biomarker. This way, you either have it or you don't. If you don't, then maybe you have a different physical disease. Then we can put away that idea that this is a mental condition.
really great show once again, thank you!
I am wondering about the immune system and microglia might be related to this?
Covid infection and glial cell damage are known to be correllated vis a vis brain fog and neurological sequelae in a review published sometime last year.
@@slofty There should be a TWIV, TWIN, Immune crossover event.
Interesting idea to have a crossover . Could be a fund raising event perhaps for MicrobeTV even
Yes activated microglia is a big topic of interest by Long Covid and ME/CFS researchers
Many with ME/CFS and Long Covid can have Mast Cell Activation Syndrome (MCAS). A recently discovered disease in which dysfunctional and hypersensitive Mast Cells can cause all the symptoms and triggers including PEM that are known from ME/CFS. Mast cells are a white blood cell that can be found in all organs of the body including the brain. They are part of the immune system and also regulate many functions in the body. They can produce and release over 1,000 different types of chemical mediators. Symptoms you get depend on which mediators are released, how much is released and where they are released.
Gez Medinger
The Role of MCAS in Long Covid With World Leading Specialist Dr Lawrence Afrin
Annallergy
Symptoms of mast cell activation
Exposing poorly conducted studies is an essential part of the scientific process and of maintaining the integrity of science, and clearly that is important to both of you. Junk science erodes the public confidence in science, and as we've seen, that can have devastating consequences.
What I find most disturbing is that something has become corrupted in the peer review process that allows papers like this to be published with such glaring flaws unchallenged.
I don't know just what it is that these people are doing, but whatever it is, it certainly isn't science.
One of the arguments that was made against ME/cfs having a viral or bacterial cause was that not everyone who had that infection, whether Epstein-Barr or Ross River or cytomegalovirus or Lyme or whatever, developed chronic illness (citing Koch's potulates). That always seemed to me to be a spurious argument, since we have the example of polio, where not everyone who gets infected gets sick, and not everyone who gets sick gets paralyzed. And of course there are many other examples. But I wonder if that's why Vincent was more open to the idea that ME/cfs is a post-viral syndrome.
And of course there's also the possibility of its being an autoimmune disease, perhaps of the autonomic nervous system or even of the immune system itself.
Thanks for all you do to raise awareness and to combat junk science. And thanks to David Tuller for all you've done to confront the purveyors of biopsychosocial snake oil.
Bad science harms science, and that harms everyone.
Sadly there’s a lot of junk science around especially in psychiatry because their peer review system is equally biased colleagues just patting each other on the back all wanting to prove their hypothesis, When the proper scientific method the process is the opposite, i.e. if you have a hypothesis your aim is to mainly try to disprove it with many different scenarios. Your peers job is to disprove it too. If it can’t be disproven then it is taken to be more likely to be fact.
Psychology and psychiatry don’t do this. They love to ‘prove’ their behavioural and FND hypothesises, so manipulate their studies to fit their predetermined outcomes. It’s an embarrassing field of junk science.
Many with ME/CFS and Long Covid can have Mast Cell Activation Syndrome (MCAS). A recently discovered disease in which dysfunctional and hypersensitive Mast Cells can cause all the symptoms and triggers including PEM that are known from ME/CFS. Mast cells are a white blood cell that can be found in all organs of the body including the brain. They are part of the immune system and also regulate many functions in the body. They can produce and release over 1,000 different types of chemical mediators. Symptoms you get depend on which mediators are released, how much is released and where they are released.
Gez Medinger
The Role of MCAS in Long Covid With World Leading Specialist Dr Lawrence Afrin
How do you tell the difference between vaccine injured and long covid?
If you have long covid.. you will get a lollipop, barbie doll.. or a sausage roll !
if you are vaccine injured, you will get censored..
that is the difference... pick your prize
love from NZ ..kiwichick ! ;)
Same here.
How can I join a trial that also concerns previous long-term Lyme and co-infections?
The lock in the lockjaw of your guest is vagus nerve involvement.
“Use it or lose it” has been the helpful mantra to keep me going. Hard to tell how much is enough. Also must stay alert to new stressors that tax the system without realizing it. From weather to family stress, from world news to mounting fearful frustration at the insular medical & insurance stranglehold on our health. Al$o the dollar drain.
CBT can help, but the bugs and the cyclic immune inflammation are real. Research designs are inherently biased and self-sealing. The model for financing them induces the “sunk cost” motivation to disregard emergent outcomes.
I’d consider any public health masters program at the cutting edge of this research.
I’m curious about the intersection of long Covid, ME CFS, Fibromyalgia, & MS
They all interact with Epstein Barr
I remember twiv 869 and I’d love to hear more
I wonder if there’s a new paper the twiv team could discuss?
Either way continued thank yous for all you do
Last nights office hours was great too!
@@donsantiagoramoncajal1199 yes, you are correct I meant Multiple Sclerosis and yes I know functionally it’s different than the others however the intersection. I was referring too is all have a relationship to the Epstein Barr virus if you have not listened to TWiV 869 where they discuss this I urge you to, it’s a fascinating episode
Thank you for looking out!
ME was originally tied to polio outbreaks and called Atypical Polio.
IT has to be questioned re the contaminated vaccines of the eighties especially, with XMRV virus.. lab rats used in trials were immune to the disease that infected humans, a Murine virus, as if this is still happening
I was confused by that. Not sure who he was talking about from one moment to the next.
His rambling was tough to follow
Even with brain fog this wasn't difficult to follow ☺
Mitochondria
They have their own DNA
Which can be damaged
And cause chronic complications.
Look at Ciprofloxacin side effects
Or studies into Gukf war syndrome
And look at the links between spike protein and mitochondrial dysfunction.
Great guest! Great episode.
Would to see a study of using hyper-nourishment to help heal people with long covid. A healthy body can heal itself better.
This has been tried in ME/CFS to no avail, some people who aren't eating well will no doubt improve a little, but no panacea sorry
Are we not allowed to link pre-prints in the comments? Mine seems to be deleted before it’s posted. Here is the title I would love to see reviewed/critiqued, “Mouse Adapted SARS-CoV-2 Model Induces “Long-COVID” Neuropathology in BALB/c Mice”
I think RUclips automatically deletes links.
@@AJansenNL Not links, but content of comment.. this channel is shocking for censoring
Tom Cowan. That's the sentence.
Important topic. Unfortunately hard to follow with his rambling. At 22 minutes in he gets to the heart of the matter
Personally I did not have trouble following him.
He was a good speaker I thought. Nice chap too
Long covid is not entirely due the covid virus itself. Vax derived spike protein shares a major role in this. Booster make people more vulnerable for the people who were already suffering. It was great failure for the "experts" to recommend boosters for all ages. A lot of the people did not need them where as vax spikes forced them create more antibodies than required which is doing enormous disabling problem.
That’s an entirely different issue. This video is about long covid not vax injury. And me cfs which had always occurred post viral infections as well as other related causes. Myself and most posting here got it pre vaccine release.