brilliant - can you have a Lack of vasculature and oxygenation to the vital organs whilst the blood oxygen levels are completely fine??????

the most relevant question would also be are they vaccinated or not and how many shots as long vaxx and Long COVID are exactly thesame symptoms

Thank you

I am just so grateful to have become a recent patient of INIM and am just starting my journey to hopefully a better life. Local doctors dismissed my low immune numbers after several years of me telling them something is wrong with me suffering from PEM after minor activity. I was able to avoid covid until late 2022 but after that my symptoms worsened to the point where I could hardly get out bed for a year. I was lost until I finally saw doctors under Nancy’s group and now have some hope. So grateful for the institute’s work and everyone working on solving ME/CFS/long covid. They developed treatment for HIV, it’s time for us now.

Welcome to my life

Of course it doesn't switch off after mRna vaccines - they instruct your cells to produce spike protein, so the immune system gets exhaisted having to continuously fight

I got "pots " in 2016 after getting a hospital acquired superbug infection . Before covid . I have white matter hyperintensities on MRi. I am disabled . it's bad .

What does ME/CSF stand for?

Is the link an MRNA vaccine?

Full of ads not relevant to non local people

Yes, it is a terrible name to be descriptive. It is a horrible thing to have. It's like someone asking the interviewer where the heck did she get her credentials😮.

Sign up for the COVID-UPP Study: redcap.nova.edu/redcap/surveys/?s=RMEDJ7LKCX&_gl=1*1h830h7*_gcl_au*MTM2NDA0MTQyOS4xNzE1MDA0ODAy

Been dx with " pots " air hunger is my worst symptom . Since 2016 after an ESBL infection . Will talk to my Dr about Mestinon and LDN.

Where can I get the supplements?

Sensory exertion! That is still my biggest struggle 4 years post covid. Good luck with the study! I wish I lived closer to you.

Incredible!

Thank you so much for the work you are doing! I found the podcast yesterday and have listened to 5 so far. Diagnosed with ME/CFS in 2013. This is one of the most informed, compassionate rsources I have found and I am grateful to understand more about the research. It is honestly just good to know it is being studied so seriously and answers are beginning to appear. There are still doctors out here who will tell you that your symptoms are pyschosomatic! (I have a great GP and have not had much luck with specialists.)

Donate to ME/CFS Research: givecampus.com/b3yrwb

Please stop interrupting him

It makes no sense for a CFS researcher to say they aren't trained in mold. You simply ASK how this syndrome began, and then you KNOW. How does one expect this to be in the literature when they are TOLD about "Mold at Ground Zero for CFS" but REFUSE TO RESPOND "Because it's not in the literature" A totally insane "Catch 22"

My PCP, whom I've seen for 2 decades, has been very supportive of my struggle with ME and guiding any possible treatments that might provide some relief. After my last visit, she started to recommend "forced excercise" (I had to ask what that even meant) and even after I raised PEM as a hallmark of this illness (and for me in particular) she urged me to do 20 minutes every day. It has unfortunately changed my relationship with her and how I will relate to her, and altered my trust in how she actually understands my condition. Thank you for this.

maybe low copper too much zinc

Can the phenomonon of being able to smell the covid vaccinated be explained by MAST cell disorders? I often react with particular symptoms and the smell is unpleasant and difficult to cope with. Thanks

See, we weren’t lying after all.

Crimes against humanity

Well Nevermind, I had commented I would see this Dr because he said something about Boston. I guess he only practices now in Clearwater, FL??

PEM is horrible 😢. It can come up to 2 to 3 days after the exertion. It's hard to overcome because you really can't do much of anything for it. Rest, attempt to get more sleep..... No medicine for it.....just have to waste time to let your body recover. Taking B12 and B1 and other supplements that help the Methylation process can help, but everyone's body is different. MECFS is the only disease in the world with PEM...... really no fun. Let's continue to pray for solutions to MECFS. Miss Monique 🙂🙏🌷💗

I’m dead serious when I say I need to unplug your air freshener… sorry. Or can you please stay away from me if you have anything scented on you. I need to use unscented , hypoallergenic everything. I shouldn’t eat that food because it has artificial preservatives. Sorry guys I can’t stand outside in the cold (fortunately heat is oddly fine, I get a histamine and inflammatory response to the cold). Can I have a consult with the doctor over the phone for my prescription refills? Trying to explain this one is frustrating. I can’t even walk into a clinic because they have used the sanitizers and other cleaners that with flare me right up. And don’t let me get started with the Uber driver situation. One of those little trees air fresheners is the death of me. I now have a literal respirator for those situations now. No im not contagious, no I don’t have covid, I can’t breath in your vehicle. I drive but on days the car is in the shop. Ugh. I have normal seasonal allergies yea but this new crap came after I had Covid I 2020. I step into shoppers to get something I feel like I’m going to pass out. And that’s not me being dramatic. 😢

Good talk except that I've never seen a patient with "long covid" who did not get the vaccine, but I know of so many people who got covid but did not get the jab, yet none of them have "long covid". I think this is mostly vaccine injury.

I have done this on purpose because over the years of medical trauma and medical gaslighting I had to learned doctors minds otherwise I will never get the treatment I deserve. I became my own doc, my own attorney, my own social worker to survive the system. Thank you Dr Theo for reaffirming this.

Please we need help desperately we with fybromyalgia we are treated so badly by the medical fraternity, when I was young and sick I got ignored now iam older they like to blame it on old age,I won't even go near doctors now they have no clue help help help us thank you

Why are doctors so ignorant and shut down to fybromyalgia chronic fatigue, we in Australia with fybromyalgia are treated like its all in our head even though I body is clearly breaking down,I have been a hard very active worker all my life bit by bit I have become so unwell I couldent care if I died ..A major hospital in Sydney dident even no about fybromyalgia

I have had fybromyalgia for over 30yrs I have also had covid I got very sick from infection for covid I have suffered from chronic fatigue so badly I could do nothing but sleep I feel like I am going to die, I often can't lift my arms I am to tired long Ovid is the same,I have had Epstein bar many other severe illnesses

Donate to ME/CFS Research here: www.givecampus.com/b3yrwb

We need Ai to boost research, it's going too slow. Lives are not being lived.

Neither Dr Jason or Dr Klimas ever looked into Chronic Fatigue Syndrome. They don't even know why Dr Cheney called the CDC for help back in 1985

Is there anyone who has high cholesterol and thyroid issues with MCAS? Ive also got the diagnosis of mixed connective tissue disease.

Hypermobility like hEDS increases the risk

A lot of people who have MCAS also have hEDS. Its part of the triad. Some may have extra copies of the tryptase gene too..

The dr said thie research needs a connective approach. I wonder if the body's connective tissue, the mast cells being in the connective tissues and the mast cells moving in the blood and the brain blood barrier....since many ppl with genetic connective tissue disorders (Ehlers-Danlos, Hypermobility Spectrum, Marfans disorders) tend to get everything involved: POTS, ME/CFS, MCAS, Small fiber neuropathy, chronic pain, migraines, brain fog, chemical sensitivies, etc.

I appreciate you want to advertise the research studies and get patients to study and those who want to partipate but it is extremely distracting when you have them in the middle of the discussion. With our short term memory issues...by the time you do the "ad for the center", we have already forgotten what you were talking about. Maybe doing the ads befote the discussion starts...it would help us keep focused.

It's a pity that the research was delayed by decades (when ME/CFS was affecting mostly women) and only when covid came around that more researchers started looking at it.

Wrong healthy people got long covid also

I was severely low in Vitamin D. I was leading a stressful life when I had the Wuhan virus in Early 2020. It reactivated my chicken pox virus gave me shingles, pneumonia, hypo thyroid and after a year of Long COVID, pots and extreme fatigue. Then, diagnosed with breast cancer. This Virus ruined my health. I had been extremely active and well ALL MY LIFE. Now...,..ugh! ME/CSF now

Fasting insuline, folate and vitamin b12 status, iron, vitamin D and K, zinc

Medical advocate here, I tell my health workers to remember that they are feeding their families because of my suffering. It is the only way to explain how medical trauma affects us.

Can u help me.. I have progressing ms.. am so scared.. dont know what to do? Thank u

Excellent talk !

This is what i an studying. Acetylcholine and ace2 ( diabetes and celiac disease)

I really appreciate you making this video. My ex of 7 years cheated and gave me herpes1&2 during our relationship and I was devastated. You’ve made me feel so much better doctor Igudia and seeing all these people share their testimonies about your cure