Bob
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Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Well, I thought Carole Head mentioned Dane Cook but maybe that was just in my head. Zaher Nahle, anyway, on December 17, doing a year-end review:
Why?Wow what a waste of money, energy, time, thinking.
Thursday Nov 19, 10 am Pacific Standard Time? I took notes during the video but I do not know if I got it right, I was too busy listening.Yes, she mentioned Dane Cook (I believe it was in November?) but didn't catch the day if it was said.
This is consistent with an autoimmune response, but does not prove it.Interestingly, following my "sore throat," there was then a lull of a couple of weeks before ME hit me out of the blue. Likewise, there can also be a lull of weeks between strep throat and the onset of rheumatic fever. Apparently, you can get rheumatic fever up to 4 or 5 weeks after your strep throat resolves, when you are feeling fine.
While the mitochondrial appear to be impacted its likely that only some have mitochondrial disease, the rest appear to have secondary mitochondrial dysfunction induced by the disease itself.
Do you find all biomedical research offensive, or just the research which disagrees with your personal feelings about the cause of ME/CFS? It was an excellent presentation, regardless of what anyone's beliefs are regarding pathology, and certainly not a waste of anything.Wow what a waste of money, energy, time, thinking. Glad I didn't wake up for this, hah.
This is consistent with an autoimmune response, but does not prove it.
Interestingly, following my "sore throat," there was then a lull of a couple of weeks before ME hit me out of the blue. Likewise, there can also be a lull of weeks between strep throat and the onset of rheumatic fever. Apparently, you can get rheumatic fever up to 4 or 5 weeks after your strep throat resolves, when you are feeling fine.
It does make one wonder...
Excellent presentation. I expect he will draw a lot of flak here for his discussion of strep A & beta adrenergic receptor molecular mimicry hypothesis. The subgroup he was discussing is certainly in line with my history, though. My illness started after a series of strep infections. POTS sudden onset followed about a decade later after an undiagnosed sore throat illness.
I would just add that these findings re: pregabalin & gabapentin are interesting. Dr Goldstein regarded gabapentin (Neurontin) as one of his top drugs for CFS/FM patients. This study by Light et al nicely validates those clinical observations using a double-blind crossover design and gene expression measurements. It also explains why some with this diagnosis feel worse / absolutely awful on this treatment.
I have only ever taken 25 mg Lyrica given to me as a possible migraine preventative. It sent me to sleep for 30 minutes and I was very fatigued and a bit dizzy after so for the life of me I cannot imagine how anybody would ever get up to 150 mg a dose and higher!
Like many people with ME/CFS I am very sensitive to medication whereas I have noticed that most of the people who have Fibromyalgia in the group that I run locally are able to take huge doses of medication so there does seem to be differences between the 2 groups. Our group consists of around 80 people and I have come into contact with well over 300 people over the years who suffer with FM and this ability to tolerate pretty strong medication seems to be the rule and not the exception.
Pam
so... during the interval of about 24 minutes to 28 minutes into the video, Dr. Light talks about the beta2 androgenetic receptor, StrepA , the Close match of their receptor epitotes, and the possibility of molecular mimicry triggering an autoimmune response....
I would love to hear some comments, how about it @Jonathan Edwards, since you've expressed your doubts about Molecular mimicry in autoimmunity.
ME/CFS symptoms by screwing with circulation, and his explanation of POTS symptoms made a lot of sense, even when it's not triggered by other BP issues. Basically the rapid heart beat means that the heart doesn't have time to fill between beats, so each beat isn't pumping enough blood. And that's why people with POTS feel like crap, even if their orthostatic intolerance comes with high blood pressure instead of low blood pressure. Though he did emphasize that there are definitely other types of OI.
That might have been due to time limitations ... he had 45 minutes to cover a lot of ground, and OI was a bit peripheral.What he said about POTS and blood pressure being normal or high is oversimplified.