I really hope that Prof Scheibenbogen will be able to get the funding needed for her studies. I believe that these studies will prove to be very important and necessary.
Where are the treatment recommendations? Even if not perfect / perfected now, what is the regimen and how long, dosage and frequency of meds / supplements and non-pharmaceutical and non-supplemental treatments?
does anyone know if the Interleukin 8 she talks about IS or is NOT part of the Interleukin 8 that is tested for on a Cytokine Panel? It sounds like it is a special one derived from a different process than what would normally be done in a lab in say, the USA
ME/CFS if used as a doctor as a diagnosis for a patient, that physician will be investigated, reprimanded, their reputation impugned. Might even result in nonpayment for testing and visits. All which impair physicians and patients from figuring it out to treat. Many viral and likely other infectious causes can create these long post illness syndromes. Are they self limiting? How long? Do they trigger other long lasting and even permanent problems?
Arginine and or Beta Alanine have both been associated with minor recoveries for me but I hadn't realised this until I looked at my data. Interesting . Might try this again.
I think the “excitement” about long COVID is that they’re seeing the development of ME/CFS in real time, with a known trigger, rather than just seeing patients when the patient has been post-trigger for months or years after the onset of their ME/CFS.
@@gypsypath1 right? I've suffered for 10 years. There are no answers. The medical community doesn't care about ME/CFS patients without C19. Society doesn't care about people with invisible illnesses. You try to explain that you can't stand in line for 10 minutes and they respond with "You look fine. Just wait." And my POTS USA kicking in and muscles are weak from deconditioning. People are cruel. Who wonders why we have given up faith in the medical community?
Thank you for your work. CFS is hell. Have it after Covid. Hoping and praying for some solutions soon.
I really hope that Prof Scheibenbogen will be able to get the funding needed for her studies. I believe that these studies will prove to be very important and necessary.
Great research. I am hoping treatments such as BC007 for the autoantibodies will be available soon.
This data is extremely interesting!!! Wonderful presentation, as a long hauler with ME, THANK YOU all for this work!
Thank you for meaningful data and early clinical science.
Where are the treatment recommendations? Even if not perfect / perfected now, what is the regimen and how long, dosage and frequency of meds / supplements and non-pharmaceutical and non-supplemental treatments?
Please look into the role of Mycotoxins in Me/Cfs given what transpired during the 84 Tahoe Outbreak
If autoantibodies predict severity, I wonder if that means frequent crashes in the beginning aren’t the real reason some people become severe?
A few years ago, Ron Davis, PhD, saw differences in RBC flexibility. Could this be related to the RBCs collecting cytokines in their cytosol?
does anyone know if the Interleukin 8 she talks about IS or is NOT part of the Interleukin 8 that is tested for on a Cytokine Panel? It sounds like it is a special one derived from a different process than what would normally be done in a lab in say, the USA
ME/CFS if used as a doctor as a diagnosis for a patient, that physician will be investigated, reprimanded, their reputation impugned. Might even result in nonpayment for testing and visits. All which impair physicians and patients from figuring it out to treat.
Many viral and likely other infectious causes can create these long post illness syndromes.
Are they self limiting? How long?
Do they trigger other long lasting and even permanent problems?
Long recognized, though continues hotly debated in EBV and CFS and Lyme Disease and Chronic Lyme disease.
Arginine and or Beta Alanine have both been associated with minor recoveries for me but I hadn't realised this until I looked at my data. Interesting . Might try this again.
Seems to be nutritional defiencies
My dad experiencing it
Duh, just like so many other viruses.
I think the “excitement” about long COVID is that they’re seeing the development of ME/CFS in real time, with a known trigger, rather than just seeing patients when the patient has been post-trigger for months or years after the onset of their ME/CFS.
@@gypsypath1 it will never be cured, it's the perfect virus.
@@gypsypath1 She says a subset of people with PCS have ME/CFS not everyone
@@gypsypath1 right? I've suffered for 10 years. There are no answers. The medical community doesn't care about ME/CFS patients without C19. Society doesn't care about people with invisible illnesses. You try to explain that you can't stand in line for 10 minutes and they respond with "You look fine. Just wait." And my POTS USA kicking in and muscles are weak from deconditioning. People are cruel. Who wonders why we have given up faith in the medical community?
@@MP-uo6qd so far, but will probably develop in the future, that was my experience