Kati
Patient in training
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Replications are lacking after good but small sample papers also.Whatever it is they've found I hope it comes with a plausible story attached and not just 'oh isn't that interesting'.
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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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Replications are lacking after good but small sample papers also.Whatever it is they've found I hope it comes with a plausible story attached and not just 'oh isn't that interesting'.
Cort made some interesting comments on his blog...Should we have a sweep - guess the metabolite ?
The specific substances are embargoed. One of them is fascinating. It points to a very different approach to ME/CFS – one that has some basis in prior studies – but is hardly ever mentioned. If it holds up I think it could be a really major finding.
I will say, though, that one of Lipkin’s embargoed results is just fascinating…
Cort is certainly building a bit of expectation, let's hope it's as fascinating as he is making out !Cort made some interesting comments on his blog...
i think they said in the spring.
Who volunteers to email Lipkin and ask him?
Certainely someone has emailed him before?
Sometimes getting an estimate is all we going to get, depends on where they are at, submission/peer review/acceptance/publication...
Oh the wait..
Cort said:What had driven the “The World’s Most Celebrated Virus Hunter” to take on our disease? I asked his assistants. They told me that Ian Lipkin wants to do two things more than anything else before he retires: he wants to solve ME/CFS, and he wants to solve autism. We’re on his bucket list.
Considering the overlap in symptoms between the two conditions (sleep dysfunction, sensory processing, digestive complaints/food allergies), finding a cause for one will likely assist researchers in finding the cause for the other. Or at least that is what I tell myself to give myself hope for the future. They say the children are our future, right?What had driven the “The World’s Most Celebrated Virus Hunter” to take on our disease? I asked his assistants. They told me that Ian Lipkin wants to do two things more than anything else before he retires: he wants to solve ME/CFS, and he wants to solve autism. We’re on his bucket list.
Lipkin emphasized, though, that ME/CFS is not a one-size fits all disease. For instance, it’s possible that fungi may be a problem for some patients. That’s an intriguing idea given the recent fungi funding in Alzheimer’s disease published in Nature.
I predict a lack of cAMP. I have been thinking on the Ca++/cAMP axis for a long long time now, since the 90s I think. However if we are losing cAMP somehow from our cells, then that would be consistent with my current thinking. I do not know how this could happen however.cAMP
One thing I think is likely but I hope never happens is at some point we will discover we had the key finding years or decades back, but it was never followed up.
Well, this quote from Cort Johnson, that I posted earlier, implies as much...One thing I think is likely but I hope never happens is at some point we will discover we had the key finding years or decades back, but it was never followed up.
The specific substances are embargoed. One of them is fascinating. It points to a very different approach to ME/CFS – one that has some basis in prior studies – but is hardly ever mentioned.
I like Professor Lipkin very much but i think he's a little too optimistic. ME/CFS will never being solved because it isn't one disease. The patiënts from Peterson (bloodsamples and spinal fluid used in his study) are from a specific subgroup and is not representative for all ME/CFS patiënts.
To better control for heterogeneity across patients and sampling strategies, in the present study we leveraged the clinical databases and biological specimen repositories of two recent, large, multicenter cohort studies of ME/CFS to assess the relationship of immune signatures (51 cytokines) with diagnosis and other clinical variables: (i) the National Institutes of Health (NIH) study, initially developed to address a specific hypothesis regarding infectious exposure (11) and (ii) the Chronic Fatigue Initiative (CFI) cohort study (12).
Lipkin has also previously mentioned mold in the environment, so the fact he's mentioning it again caught my eye.I wonder if Lipkin is talking about fungi in the microbiome, or fungi in the brain, or both.
In the recent article in Nature (mentioned above) I believe they showed various species of candida present in the frozen brain tissue of 10 out of 10 Alzheimers patients and 0 out of 10 controls.
http://www.nature.com/articles/srep15015
Can fungi in the gut migrate to the brain? By what other route could fungi get into the brain? ( A break in the skin perhaps.)
Overgrowth of candida in the gut has long been suggested as a possible cause of symptoms for some patients.
So, it's in the gut...?
What has been studied before but has not had significant attention? Dysbiosis has had a lot of attention.
Enteroviruses? This quote from Hornig suggests not:
He didn’t state anything about more pathogens. I heard Mady Hornig state that when she was in Incline.
So, lactic acidosis, fungi?