Preliminary news from Lipkin & co

[Kati]

Whatever it is they've found I hope it comes with a plausible story attached and not just 'oh isn't that interesting'.

Replications are lacking after good but small sample papers also.

 

[wastwater]

cAMP

 

[JPV]

Should we have a sweep - guess the metabolite ?

Cort made some interesting comments on his blog...

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…

 

[BurnA]

Cort made some interesting comments on his blog...

Cort is certainly building a bit of expectation, let's hope it's as fascinating as he is making out !

 

[Ellkaye]

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..

If anyone does dont forget to tell him there are patients on arv s and improving...

 

[Scarecrow]

http://simmaronresearch.com/2015/12...ears-to-solve-chronic-fatigue-syndrome-mecfs/

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.

 

[SB_1108]

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?

 

[Forbin]

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 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.

 

[alex3619]

cAMP

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.

 

[wastwater]

PKA(C) cAMP and fungus maybe

 

[JAH]

Is Montoya in on this publication? I thought he was also going to publish a paper soon?

Another CFS researcher (can't say name) said they could solve CFS in 2-3 years 5 years ago, not that Lipkin might not be right. If Peterson said something like that, I'd actually believe him. You really have to be in the trenches with this diseases or a while to know how pernicious it is.

 

[JPV]

The current research trends, for just about every chronic illness, seems to be focusing on studying pathogenic bacteria, fungus and a disrupted microbiome as being the major complicating factors and/or root causes. I expect this research to be no different.

 

[alex3619]

Retrospectively, almost every claim and every finding, with a small number of exceptions, have turned out to be limited or wrong. This is likely to continue.

The caveat is this. They will keep getting it wrong till they get it right. One of these discoveries or research programs will find the missing piece that puts the puzzle in place. We cannot predict which one, or if Lipkin is the right study or a misleading one. We can only keep pushing all avenues of research until we have answers.

No avenue of research should be left, ignored. Sadly this has not happened. Numerous findings remain without follow-up.

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. I argue we cannot allow research such as Lipkin's to languish.

In a huge part this stems from lack of funding, with all the political and medical failure that is tied to.

 

[Forbin]

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.

I actually think it's possible that this has already happened. In retrospect, it seems obvious from the symptoms that patients (especially recently afflicted patients) were suffering from a chronic immune response. Yet, because that response eventually "burns out" (although the symptoms may not) the data was a jumble until Columbia's team thought to look for subsets based on the length of illness.

As for why the symptoms persists when the immune response goes sub-normal, one disturbing possibility is that the elevated immune response itself does damage (or perhaps causes some kind of persistent "sensitization") over time. I think Dr. Hornig may have elliptically suggested something along these lines when she said that the study showed that early intervention may be important.

People usually recover in a few days from the immune response to a viral infection, but perhaps only because the elevation of the cytokines is transient.

I guess the question I'm asking is... what does it do to the body (particularly the brain) to be bathed in elevated cytokines for three years or more?

[On the other hand, the elevated cytokine levels may simply be incidental to some other continuing process which is not driven by them.]

 

[JPV]

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...

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.

 

[Sidereal]

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.

The spinal fluid study was Peterson's patients (which I agree is an unrepresentative sample) but the blood study wasn't.

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).

 

[wastwater]

I hope there's a bit more on SERPIN,as it involves thyroxine and cortisol

 

[cigana]

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.

Lipkin has also previously mentioned mold in the environment, so the fact he's mentioning it again caught my eye.

 

[cigana]

From Cort's blog:

I tell you though one of the embargoed gut findings is simply fascinating. It’ s a very different look at ME/CFS and I think it ties in really well in a way that nobody else is really looking it. If the finding holds up be ready for a big surprise.

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?

 

[A.B.]

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?

I would interpret his words to mean something that hasn't really been looked at before.

That would rule out leaky gut and enterovirus infection related things, or d-lactate and other stuff by Maes and Meirleir. But perhaps Cort simply isn't aware of what Maes and Meirleir think about the gut. It would be a nice surprise if some of their ideas were confirmed by an independent team.