Why i don't think there will be a cure for ME

[Violeta]

Well since the very early 1990s they have known that patients with cfsme have low natural killer cell function and there have been many studies since, many.

Why is the ball being dropped there. Why is the nk function low? How can they improve the nk function and will this improve or cure cfsme??

I do believe there was a drug that actually improved nk function and improved the outcomes of cfsme pts but for many and unknown reasons, research just doesn't get off the ground. If it did I believe they would have had an answer 20years ago. Instead we keep going around in circles year after year.

Have you tried colostrum? This study and a small one on humans says it enhances Natural Killer cell activity.

I am just getting started with it, so I have no testimony with regards to it working or not.

https://pubmed.ncbi.nlm.nih.gov/24774068/

 

[Violeta]

Well since the very early 1990s they have known that patients with cfsme have low natural killer cell function and there have been many studies since, many.

Why is the ball being dropped there. Why is the nk function low? How can they improve the nk function and will this improve or cure cfsme??

I do believe there was a drug that actually improved nk function and improved the outcomes of cfsme pts but for many and unknown reasons, research just doesn't get off the ground. If it did I believe they would have had an answer 20years ago. Instead we keep going around in circles year after year.

Natural Killer Cells in Antifungal Immunity​

However, it has been show that fungi exert immunosuppressive effects on NK cells.

I don't understand how fungi does this yet.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5702641/

 

[heapsreal]

Have you tried colostrum? This study and a small one on humans says it enhances Natural Killer cell activity.

I am just getting started with it, so I have no testimony with regards to it working or not.

https://pubmed.ncbi.nlm.nih.gov/24774068/

I tried colostrum pre cfs. It was suppose to help speed exercise recovery etc. I didn't notice any effects from it, but I was in my mid 20s and quite fit and healthy then.

 

[heapsreal]

Natural Killer Cells in Antifungal Immunity​

However, it has been show that fungi exert immunosuppressive effects on NK cells.

I don't understand how fungi does this yet.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5702641/

At a guess its another infectious burden on the immune system. I recall reading awhile back that the longer one is ill with cfs, potentially the more infections they have. This would pit a greater burden on the immune system and probably show a lower nk function then someone who is newer to cfs????

 

[Violeta]

At a guess its another infectious burden on the immune system. I recall reading awhile back that the longer one is ill with cfs, potentially the more infections they have. This would pit a greater burden on the immune system and probably show a lower nk function then someone who is newer to cfs????

That makes sense.

 

[Tammy]

Diseases have cures, not syndromes.

What diseases are those?

 

[Wishful]

That makes sense.

I'd like to point out that for a complex problem that is still not understood, theories that "make sense" may not be correct. That's fine if it doesn't affect any decision-making, but it's a problem if someone invests heavily (money, stress, whatever) on a theory that while seemingly sensible, is wrong and possibly counterproductive.

 

[Violeta]

However, it has been show that fungi exert immunosuppressive effects on NK cells.

Although it was observed that patients suffering from chronic mucocutaneous candidiasis (CMCC) have a decrease of both NK cell number and cytotoxic activity (58–60), the exact impact of NK cells in the pathogenesis of the infection or in the progression of the disease is hard to define, in particular as cell-mediated immunity is also impaired in patients with CMCC.

In C. albicans, human NK cell are cytotoxic against germ tubes and additionally are able to phagocyte C. albicans yeasts (8 ± 0.5% of C. albicans yeasts were phagocytosed by NK cells within the first 2 h of interaction).

In this regard, we have to learn how the fungus compromises the host immune system, which might offer new targets in our combat against the pathogen.

And this is why I am reading about NK cells:

In addition to their antitumor activity, NK cells play an important role in the host response against various pathogens which includes viruses such as cytomegalovirus (CMV), Epstein–Barr virus (23, 36–38), or hepatitis B and C virus (37, 39, 40), and Gram-positive, Gram-negative, and intracellular bacteria, such as Salmonella typhi, Escherichia coli (41), or Listeria monocytogenes.

 

[Violeta]

I tried colostrum pre cfs. It was suppose to help speed exercise recovery etc. I didn't notice any effects from it, but I was in my mid 20s and quite fit and healthy then.

I have tried it in the past but didn't notice much benefit. This time I am trying it with a few other antifungals and something is helping, but to be honest, it difficult to tell what.

We have a 17 1/2 year old dog that we are nursing, and one day we decided to give him some colostrum. He started eating again! And sometimes he eats a lot! That was the day I thought I would try colostrum again.

So far my antifungal efforts have been successful. I have made it through 3 days without taking a nap. Yesterday I was up until almost 11:00 waiting for my husband to get home from work and then between the two of us we send the puppy out for his last potty break, which turned into 2 potty breaks. I woke up this morning! No headache, either!

I also have longer periods of no postherpetic neuralgia on my face.

As with everything, though, we'll see.

 

[Rufous McKinney]

I tried colostrum pre cfs.

so did I..........

in my case, IBS prevented my body from absorbing the colostrum: I'd see the pill intact on the other end.

 

[datadragon]

Well since the very early 1990s they have known that patients with cfsme have low natural killer cell function and there have been many studies since, many.

Why is the ball being dropped there. Why is the nk function low? How can they improve the nk function and will this improve or cure cfsme??

We uncovered a significantly increased NK cell killing activity due to 1 h zinc pre-incubation and contact to zinc-rich medium in physiological concentrations. Moreover, co-stimulation of zinc and IL-2 provoked an additive increase in NK cell killing activity. In contrast, zinc deficiency induced by 1 h TPEN pre-incubation significantly decreased the killing activity of primary NK cells. https://www.sciencedirect.com/science/article/abs/pii/S1756464618303621

a disturbance in zinc homeostasis would explain why killing is reduced if zinc supply is limited and increased if additional zinc is supplied. NK cell function was weakened when zinc signals are absent. zinc supplementation increased differentiation of CD341 progenitors toward NK cells and their cytotoxic activity, as well as NK killing activity, and intracellular perforin concentrations https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5748737/

NK cells are able to destroy transformed or infected cells, largely due to recognition of changes in major histocompatibility complex MHC-I composition that are caused by the degeneration or the pathogen. In contrast, regular cells are protected from killing by NK cells as long as they carry surface MHC-I, which is bound by the killer cell inhibitory receptor (KIR) on NK cells. To form the so-called NK cell synapse, KIR multimerization is essential, and was shown to be zinc-dependent https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5748737/

Thymosin alpha 1 restores NK-cell activity and prevents tumor progression in mice immunosuppressed by cytostatics or X-rays https://pubmed.ncbi.nlm.nih.gov/6553515/​

https://forums.phoenixrising.me/threads/ll-37-peptide.90615/post-2441670​

LL-37 improves CpG delivery to intracellular TLR9 results in the enhanced proliferation and activation of NK cells, The findings indicate the significance of cathelicidin to NK cell function and in vivo tumor defense. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7246396/​

​

 

[heapsreal]

I have tried it in the past but didn't notice much benefit. This time I am trying it with a few other antifungals and something is helping, but to be honest, it difficult to tell what.

We have a 17 1/2 year old dog that we are nursing, and one day we decided to give him some colostrum. He started eating again! And sometimes he eats a lot! That was the day I thought I would try colostrum again.

So far my antifungal efforts have been successful. I have made it through 3 days without taking a nap. Yesterday I was up until almost 11:00 waiting for my husband to get home from work and then between the two of us we send the puppy out for his last potty break, which turned into 2 potty breaks. I woke up this morning! No headache, either!

I also have longer periods of no postherpetic neuralgia on my face.

As with everything, though, we'll see.

I know it can be a good source of protein. Many of its different peptides and hormones etc contained in colostrum I think are broken down in the gut into basic amino acids etc supposedly. The extra protein could be helping the immune system. There was a big push by Dr Cheney years back about using whey isolate which helped improve the immune system. Personally I don't think it was startling but maybe it contained alot of nutrients the immune system required. I can't recall exactly, maybe worth another deep dive and look into it again.

 

[heapsreal]

so did I..........

in my case, IBS prevented my body from absorbing the colostrum: I'd see the pill intact on the other end.

Return it and ask for your money back 🤮🤣
You could always crush the pill and swallow it that way. But not the pill that made it to the other end 🤣

 

[Violeta]

We uncovered a significantly increased NK cell killing activity due to 1 h zinc pre-incubation and contact to zinc-rich medium in physiological concentrations. Moreover, co-stimulation of zinc and IL-2 provoked an additive increase in NK cell killing activity. In contrast, zinc deficiency induced by 1 h TPEN pre-incubation significantly decreased the killing activity of primary NK cells. https://www.sciencedirect.com/science/article/abs/pii/S1756464618303621

a disturbance in zinc homeostasis would explain why killing is reduced if zinc supply is limited and increased if additional zinc is supplied. NK cell function was weakened when zinc signals are absent. zinc supplementation increased differentiation of CD341 progenitors toward NK cells and their cytotoxic activity, as well as NK killing activity, and intracellular perforin concentrations https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5748737/

NK cells are able to destroy transformed or infected cells, largely due to recognition of changes in major histocompatibility complex MHC-I composition that are caused by the degeneration or the pathogen. In contrast, regular cells are protected from killing by NK cells as long as they carry surface MHC-I, which is bound by the killer cell inhibitory receptor (KIR) on NK cells. To form the so-called NK cell synapse, KIR multimerization is essential, and was shown to be zinc-dependent https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5748737/

Thymosin alpha 1 restores NK-cell activity and prevents tumor progression in mice immunosuppressed by cytostatics or X-rays https://pubmed.ncbi.nlm.nih.gov/6553515/​

https://forums.phoenixrising.me/threads/ll-37-peptide.90615/post-2441670​

LL-37 improves CpG delivery to intracellular TLR9 results in the enhanced proliferation and activation of NK cells, The findings indicate the significance of cathelicidin to NK cell function and in vivo tumor defense. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7246396/​

​

Voila​

Candida albicans Scavenges Host Zinc via Pra1 during Endothelial Invasion​

The ability of pathogenic microorganisms to assimilate essential nutrients from their hosts is critical for pathogenesis. Here we report endothelial zinc sequestration by the major human fungal pathogen, Candida albicans.




https://journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1002777

 

[datadragon]

The ability of pathogenic microorganisms to assimilate essential nutrients from their hosts is critical for pathogenesis. Here we report endothelial zinc sequestration by the major human fungal pathogen, Candida albicans.

Yes. https://www.yeastinfectionadvisor.com/zinc.html and https://pubmed.ncbi.nlm.nih.gov/27242763/ Copper is also anti fungal and that is also reliant on ceruloplasmin production requiring zinc to make the copper bioavailable (usable by the body). Under typical prolonged inflammation/infection as the zinc uptake/availability lowers, this can therefore also cause copper to become in a non usable (non bio available) state and instead start to accumulate in the tissues and would not therefore be able to provide its role to help control fungi and yeast/candida in the gut. When hydrochloric acid (HCl) is low which also requires zinc, the healthy gut flora are weakened. HCl helps kill off pathogens and is required for the absorption of nutrients such as calcium, iron, and various vitamins. Reduced digestive enzyme production occurs and the intestine becomes overly alkaline, giving a nice home which allows candida, fungi, yeast, parasites and bacteria to flourish. The leaky gut is also tied to the zinc deficiency. Its possible to check serum copper and serum ceruloplasmin (the usable copper) and can calculate free copper levels unbound to ceruloplasmin but this is a current spot check at the time of the test only and does not reflect any long term accumulation in the tissues of copper that may have also been going on over time https://web.archive.org/web/2021030...ients-families/lab-tracker-copper-calculator/.

 

[Violeta]

Yes. https://www.yeastinfectionadvisor.com/zinc.html https://pubmed.ncbi.nlm.nih.gov/27242763/ Copper is also anti fungal and that is also reliant on ceruloplasmin production requiring zinc to make the copper bioavailable. Under typical prolonged inflammation/infection as the zinc uptake/availability lowers, this can therefore also cause copper to become in a non usable (non bio available) state and instead start to accumulate in the tissues and would not therefore be able to provide its role to help control fungi and yeast/candida in the gut. When hydrochloric acid (HCl) is low which also requires zinc, the healthy gut flora are weakened. HCl helps kill off pathogens and is required for the absorption of nutrients such as calcium, iron, and various vitamins. Reduced digestive enzyme production occurs and the intestine becomes overly alkaline, giving a nice home which allows candida, fungi, yeast, parasites and bacteria to flourish. The leaky gut is also tied to the zinc deficiency. Its possible to check serum copper and serum ceruloplasmin (the usable copper) and can calculate free copper levels unbound to ceruloplasmin but this is a current spot check at the time of the test only and does not reflect any long term accumulation in the tissues of copper that may have also been going on over time https://web.archive.org/web/2021030...ients-families/lab-tracker-copper-calculator/.

YES!

 

[Omgitsremy89]

Joshua Leisk’s most recent protocol that addresses both long covid and ME/CFS is largely focused on targeting fungal overgrowth, specifically C. albicans.

I find that interesting that he’s arrived at this approach after developing multiple different protocols over the past few decades that have been more geared towards EBV and other viruses.

His model is extremely complex but he seems to be very confident that much of the problem is due to acetaldehyde overload, which gums up a lot of metabolic pathways and lowers NK function like you all have mentioned in this thread.

I know he has somewhat of a reputation amongst this forum but I think his latest approach in treating candida is a great place to start for anyone with CFS in order to give your immune system the best possible chance at recovery and addressing other pathogens and viruses.

Heres his latest:

 

[Jackdawcawcaw]

Personally I think ME is multiple diseases hiding in a trench-coat, pretending to be one disease. So I imagine they will find a treatment for one, label the rest as fake, then in 50 to 100 years someone will find evidence of something else in one of the 'fakes', then people will drag their heals for another 40 years while bits of research take place here and there. Then something big happens (like a pandemic) and suddenly people are taking more notice. Que more feet dragging and then bam, treatment. Meanwhile the rest of the umbrella of diseases are labelled fake again. And the cycle goes on.

 

[hapl808]

Personally I think ME is multiple diseases hiding in a trench-coat, pretending to be one disease. So I imagine they will find a treatment for one, label the rest as fake, then in 50 to 100 years someone will find evidence of something else in one of the 'fakes', then people will drag their heals for another 40 years while bits of research take place here and there. Then something big happens (like a pandemic) and suddenly people are taking more notice. Que more feet dragging and then bam, treatment. Meanwhile the rest of the umbrella of diseases are labelled fake again. And the cycle goes on.

Unfortunately I agree with this sentiment pretty exactly. Same way that once they found MS or endometriosis was real, they didn't say, "OMG, maybe we've missed all these diseases." Nope, just that MS isn't hysteria, then they changed the name of hysteria and said everyone else was basically hysterical (ie. FND, conversion disorder, SSD, etc).

 

[lenora]

Many, many illnesses fall under the heading of "orphan diseases." Each time one is labelled as an illness, not a syrndrome, is a celebration.

I agree that (I think) ME is more than a virus, but as additional components that go into it. I hope your illness will wax and wane as the years pass. I have periods where things aren't as bad as they once were, and then I'll wake up some morning and the symptoms are back again. Mind you, I'm 76, so these things readily occur.

I hope younger people will be surprised by research and a secondary illness can be treated from there. Also, I believe there are people who have ME/CFS/FM. There may be separate cures for each. Yours, Lenora