@Belbyr i disagree in several points. First i was before the infection trigger healthy. Second i have the „typical“ markers of Cfs like TGF Beta and chronic low nk as also a chronic activated immune system and frequent Infections. Third the new pots study of Federowski shows the Controls have low values of these aabs- the patients have high.The Problem when you measure: Elisa- Test only can say are they there or not - only a bioessay can say are the active or not because the are receptor antibodies. At last Systrom confirmed in almost 50 percent of his cohort SFN that are all not CFS- all missdignosed ?
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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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Is there any positive upcoming news???
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ljimbo423
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It's my understanding that he tested them in actual GWI patients. He said he tested 9 herbs altogether and 3 maybe 4 were very effective. He listed boswellia, stinging nettle, curcumin and resveratrol but there were 9 in all.
These are the ones he listed but didn't say if they were the ones he found most effective or if those were the ones he remembered off the top of his head.
Something else to consider as far as effectiveness goes is dosage. I took 3-5 grams a day of BCAA's and noticed nothing. When I bumped that up to 15-20, the results were a profound increase in energy.
Another example of how important dosage is, is the fish oil I've been taking. I was getting flu-like flares regularly back in October. I had been taking 2 grams EPA/DHA day for a long time but that dosage had no effect on my flu-like flares.
I bumped my dose from 2 to 4 grams a day of EPA/DHA in October and haven't had one flu-like flare since!! That was 5 months ago! So dosage is absolutely critical in my opinion.
EPA and DHA from fish oil lower neuroinflammation. I think that's why they stopped my flu-like flares-
Rufous McKinney
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To me its more logical that an herb or group of herbs working synergistically could affect the body in a positive way...I think its MORE likely herbs would do so than a pill or generic supplement which folks are happy (or grumpily) to consume in epic quantities. The ever growing bowl of supplements...sigh.
I am starting an experiment called: modify my herb protocols so I can be on them most days instead of my current 1/4 of the time.
frozenborderline
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It is true that dosage is critical. I have had good results from high dose thiamine , for example, and good results for high dose bcaas , and good results for 6 g bcaas which I understand is a high dose. So that’s a good point. But I’d have to see what symptoms they improved to be convinced. I guess I don’t doubt that there are anti inflammatory herbs that can have strong temporary effects in cfs patients but I think that things tend to stop working for us and it’s because a lot of us have a big problem upstream of the inflammation—either some kind of neural/structural injury, like cci, or constant “low level” toxic exposure , like mold or other biptoxins And so taking an anti inflammatory tends to help temporarily but is up against a deluge of other metabolic and immune factors
ljimbo423
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I agree that there are upstream causes to the immune activation, inflammation and brain inflammation. Ultimately those need to be fixed.
I've done so many labtests for immunity, nothing to see there. Of course, one can always do more, but it really was extensive.
JaimeS
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Jen did start a Facebook for Nightengales: people with 'the constellation': ME/CFS, EDS, FM, MCAD and POTS.
Hi, I uploaded his talk on youtube for those who have trouble finding it on Facebook. You can watch it here.
Rufous McKinney
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I ran into this interesting information today from a Medical Medium regarding Eppstein Barr Virus, its four stages, how it hides in our bodies and does its mischief. Maybe folks would gain some insights from reading this.
It was posted on the GOOP web site. I was seeking reinforcement to use my elderberry syrup to antiviral Eppstein Barr.
Link: to Anthony Williams
https://goop.com/wellness/health/th...potentially-at-the-root-of-medical-mysteries/
Many of the treatment suggestions are things folks in this group are aware of or may be trying, so that part isn't earth-shaking, nor did he appear to return from Medium-land with: the exact answer. But I do like this narrative.
This prompted me to reflect upon our friend, Mr. Barr and his cousin, Ms. Eppstein. So what if Eppstein Barr keeps evolving and mutating. There likely are numerous strains. Clever Clever Virus. And what if: a body might meet Mr. Barr say the 1953 version. and then decades later is re-exposed or re-triggered and now Mr. Barr is a slightly different type or strain and the body is asked to respond AGAIN. Each time I was diagnosed with Mono by doctors, they said it was impossible to "have it" again.
And as I consider my personal LONG HISTORY of: something wrong here, more or less since birth......issues with my mothers exposure to TB, stress, IBS, depression and thyroid cancer...seem rather a BIG COINDICENCE at the moment .
Other odd coincidences....the fact that I have spent considerable parts of my life in and around some of the places where famous outbreaks occurred. Truckee, Placerville, the 1980s....I also studied lakes and Algae and certainly handled lots of algae...all just ODD coincidences. I have languished in institutional settings.
just so very interesting rather.
Think I will consume some elderberry syrup.
Rufous McKinney
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When you have ME, it no longer matters that you won the Spelling Bee. typos, so many typos...
ljimbo423
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maybe some day
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We get it, lol
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bertiedog
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My understanding is that it is a great diet to use for say a couple of months but not for longterm because it just doesn't supply enough of the right kind of fibre to feed the beneficial bacteria people with ME lack for example butyrate.
Pam
I've used it for four years and I am working again. I am now able to manage more fibre, including insoluble, than I used to be able to, and so my diet is quite a healthy one now. A normal day is some form of rice with protein for breakfast, then a Greek salad (sometimes with the onions) for lunch, and then some rice, fish and soup for lunch. I think if I changed to brown rice it would be even healthier, and contain a decent amount of fibre.
knackers323
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Anyone know if there is anything on the horizon?
@Hip do you know anymore about the two enteroviral meds?
@Hip do you know anymore about the two enteroviral meds?
Hip
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Should be about a year away from being released and available. Hopefully the price will be reasonable.
Marylib
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@bctjr1993 What about you? Seems we have the clamp device with the TRMP3 receptor being able to distinguish between ME and other diseases - and then we have the nano needle marking the whole thing around the metabolic trap hypothesis? But so far the nano needle hasn't been able to rule out other conditions?
And then we have people getting better with the cranial cervical instability surgery. It gets pretty overwhelming to me when I try to connect the dots. So in that sense it is kind of wait five minutes and check again.
And then we have people getting better with the cranial cervical instability surgery. It gets pretty overwhelming to me when I try to connect the dots. So in that sense it is kind of wait five minutes and check again.
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JES
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Ron Davis is providing almost monthly video updates. It is true that progress over the last year has been a bit disappointing, but he is providing regular updates at least.
Anyway, you are right that many of the researchers have been very quiet. Ian Lipkin is running one of the research centers that has received significant NIH funding. While digging some old stuff, I found this piece of news, where Lipkin gives a time frame of 3-5 years to solve ME/CFS. The article was written in late 2015, so I assume he'll have a solution for us in let's see... one year.
Anyway, you are right that many of the researchers have been very quiet. Ian Lipkin is running one of the research centers that has received significant NIH funding. While digging some old stuff, I found this piece of news, where Lipkin gives a time frame of 3-5 years to solve ME/CFS. The article was written in late 2015, so I assume he'll have a solution for us in let's see... one year.
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