The heart of the matter? Lipkin’s Collaborative probes post-exertional malaise (Simon McGrath blog)

[sar88]

Why would antivirals be used to treat the microbiome? Thought that was all about bacteria?

GG

Enteroviruses? Most viruses affect mucosa as well including the gut

 

[Learner1]

Poison the source and see how many things go wrong downstream

This is not accurate in my case. I had multiple viruses, bacteria, immunodeficiency, heavy metals, mycotoxins, cancer, chemotherapy, 2 existing autoimmune problems plus 2 more that developed from the infections, and a number of specific genes (like HFE and Factor 2 plus others) that have all contributed. Though some of these may be linked, the rest are unique sources of trouble.

From what I've observed, a lot of folks around here have various subsets of these, and other problems, so a single point solution is unlikely to fix us all. There may be a lucky few with simpler contributing factors where one pill is going to be a cure, but I suspect for most of us, it's going to be a step by step process of solving problems in a prioritized fashion.

 

[HowToEscape?]

This is not accurate in my case. I had multiple viruses, bacteria, immunodeficiency, heavy metals, mycotoxins, cancer, chemotherapy, 2 existing autoimmune problems plus 2 more that developed from the infections, and a number of specific genes (like HFE and Factor 2 plus others) that have all contributed. Though some of these may be linked, the rest are unique sources of trouble.

From what I've observed, a lot of folks around here have various subsets of these, and other problems, so a single point solution is unlikely to fix us all. There may be a lucky few with simpler contributing factors where one pill is going to be a cure, but I suspect for most of us, it's going to be a step by step process of solving problems in a prioritized fashion.

You say had, past tense. Were you able to elimate that massive list of trouble? All that put together doesn't sound survivable, much less a condition one could recover from.

 

[Learner1]

You say had, past tense. Were you able to elimate that massive list of trouble? All that put together doesn't sound survivable, much less a condition one could recover from.

Yes, I have been steadily improving. (from 40 to 85% function) over the past 2 years as my doctors have helped me work these problems, one by one, through supplements, drugs, hormones, antibiotics, antivirals, IVIG, and phlebotomies.

 

[perrier]

Yes, I have been steadily improving. (from 40 to 85% function) over the past 2 years as my doctors have helped me work these problems, one by one, through supplements, drugs, hormones, antibiotics, antivirals, IVIG, and phlebotomies.

Dear Learner,
Then would it perhaps not mean that the immune system (in CFS) is not working as it should, if all these pests besiege a system? I don't know the hierarchy of body systems, but isn't the immune system one of the chieftains?

 

[Learner1]

Yes, much of the research on ME/CFS seems to implicate immune system abnormalities. All of the body's systems need to work together.

 

[ljimbo423]

I don't when this update section was added but I though I would post it for those that might not have seen it-

One final point: Lipkin is not alone in thinking that problems with the microbiome might be driving ME/CFS via the immune system.

Dr Derya Unutmaz is pursuing the same idea with his own collaborative. The main difference between the two researchers’ approaches is that while Lipkin has a more molecular focus,

Unutmaz is focusing more on the different cells of the immune system, such as T cells and their subtypes.

[Update: Unutmaz and Lipkin have announced a collaboration – both will apply their techniques to the same patients to give the deepest possible profiling of immune cells.]

 

[msf]

I suggested a way that PEM might occur in my blog - I would love to be able to ask Lipkin about this. I'm pretty sure that Hanson is already looking into the area I talked about in the blog, and maybe Chris Armstrong too. Perhaps KDM too, although he tends to be ahead of his time, as he was with the significance of LPS and the microbiome (though I think his fellow Belgian, Maes, might have to take the credit for the significance of LPS). Anyway, it's good to see you are coming round to these ideas, Simon; a few years ago this forum was all rituximab and autoimmunity.