Hanson's Metabolomics ME/CFS Study Validates Naviaux's Core Finding

[Gijs]

Sorry Cort, but this is no validation. She found almost totally different metabolites. The most importent one sphingolipids were absent. For me this is a sign that Naviaux findings for a test based on 8 or 13 metabolites is not the core.

 

[Cort]

Pretty good article. Although they write CFS then CFA in this paragraph/description. Duh!

"According to estimates, as many as 2.5 million Americans are believed to have CFS, which mostly affects women in their 30s to 50s. CFA has eight official signs and symptoms, including the central symptom of severe fatigue."

GG

Ouch - Newsweek's editorial standards have gone down - not that I can really complain (lol)

 

[Cort]

Sorry Cort, but this is no validation. She found almost totally different metabolites. The most importent one sphingolipids were absent. For me this is a sign that Naviaux findings for a test based on 8 or 13 metabolites is not the core.

Yes, the lack of consistency is a bit concerning but Hanson didn't really seem bothered by that. It almost seemed like she expected it. I think we're going to see variability for awhile; the finding of consistently reduced metabolites in both studies was what I was referring to.

We should expect or at least hope that Naviaux's next study, which is underway, will have more consistent findings.

 

[Cort]

Given the major studies being done on this, a meta analysis on the 5+ studies mentioned (albeit in a few years time) will be very interesting.

Let's hope they all at least broadly agree...

 

[Aidan Walsh]

I just read a blog yesterday the Woman was diagnosed & her Family with EDS 3 plus she had Positive to hereditary fructose intolerance & they also tested Positive to BH4 Deficiency as well she mentions also folic acid deficiency & she links it all back to Birth & she even calls it a metabolic deficiency illness

 

[Cort]

I just read a blog yesterday the Woman was diagnosed & her Family with EDS 3 plus she had Positive to hereditary fructose intolerance & they also tested Positive to BH4 Deficiency as well she mentions also folic acid deficiency & she links it all back to Birth & she even calls it a metabolic deficiency illness

It shows up in EDS....Who knows what metabolomics will show? Naviaux says the improved technology has really changed things...

 

[Aidan Walsh]

Here is the Post here Cort www.mthfrheds.com Home Page I am even seeing countless CFS/Fibro patients Positive to hereditary fructose intolerance (HFI) & BH4 Deficiency...Even the saliva test that is not FDA approved shows adolase B gene for (HFI) or Liver biopsy

 

[Justin]

I wonder if and how all this ties into the issues with POTS and low blood volume and does metabolomics directly corelate to this comorbidity. It seems like the greater or more severe you are the higher degree of POTS exists.

I wonder if the Naviaux or Hanson will touch on this or is this just what ME does in the CDR and Dauer states?

Its a question that I would really like to hear an answer to.

 

[Katie]

Well, this is exciting news whether or not the 2 studies differ in results. The bottom line is they are discovering, and pretty rapidly, the many differences we've acquired through genetics, environment ( acquired viruses, bacterium etc.) that affect each one of us. Finding studies that match may be difficult until technology becomes even more advanced and knowledge on metabolomics gained.

I believe metabolomics are the key to deciphering many complicated autoimmune diseases leading to treatment and who knows maybe cures in years to come-I have my children and grandkids to think of, my daughter has some early symptoms, or rather she feels physically exactly like I did at her age.

Fantastic article, gives me hope after the Canadian embarrassment! (I'm Canadian eh!)

 

[Issie]

Very interesting info. Realized that I have so called Metabolic Syndrome. I have written a lot about congenital structural differences - both me and my daughter have spina bifida occulta - just a small missing section of L5 vetebra. Nevertheless, this is considered as a minor neural tube defect by experts. There are many minor congenital anomalies associated with SBO.

So, I am wondering if the basis of the congenital structural defects is indeed due to a metabolic defect???

My mom's first, stillborn child had spina bifida.
Issie

 

[Issie]

I just read a blog yesterday the Woman was diagnosed & her Family with EDS 3 plus she had Positive to hereditary fructose intolerance & they also tested Positive to BH4 Deficiency as well she mentions also folic acid deficiency & she links it all back to Birth & she even calls it a metabolic deficiency illness

In my family too. Hmmm?

 

[PamJ]

My mom's first, stillborn child had spina bifida.
Issie

I have a Chiari Malformation. I believe this is also related to Spina Bifida??

 

[Issie]

I have a Chiari Malformation. I believe this is also related to Spina Bifida??

I have Chair 0 and EDS and BH4 issues. My sis has fructose intolerance.

Issie

 

[PamJ]

I think it's very different. All these people needed was one substance (high dose folinic acid); they had a core abnormality that was easily treated; neither Naviaux or Hanson suggest that that is so in ME/CFS or that high-dose folinic acid will cure it. If he had found that he would have said so..how easy that out be.... It just shows how metabolomics can put an entirely new slant on a disease.

Plus note that that young man and other others didn't have "depression" as we know it; i.e. ap psychological disorder - they had metabolic abnormality.

The study shows how these metabolic problems can even affect our mood.

I think so many people, including highly educated physicians, get depression all wrong. In fact, they misconstrue what a "psychological disorder" is at its core. There are clear physical differences in so called psychological disorders. That is why medications that affect serotonin frequently work. Most psychiatrists know that they have barely begun to understand the physical causes of "psychological disorders".

Unfortunately, psychological illnesses still have a huge stigma attached to them, leading people to misunderstand their seriousness and their physical causes and symptoms.
I think this is why comparing ME/CFS to depression is seen as an insult, and makes ME/CFS patients so angry.

 

[Merida]

@PamJ
@Issie
Yes, scoliosis and the various forms of neural tube defects ( from spina bifida occulta to more serious forms) all have higher rates of Chiari. Neurosurgeon Michael Rosner ( a brilliant, wonderful person) discusses how Chiari malformations are complex and individuals demonstrate a number of different anomalies in the lower skull and upper neck which affect CSF flow and pressures.

It is interesting that we are the only mammals that have spina bifida/ spina bifida occulta. King Charles Spaniels sometimes get syringomyelia. The presence of EDS in the population is so interesting. Is this an evolutionary compensation for something??? An important, interesting book is The Downside of Upright Posture by Michael Flanagan, DC, neurological trained chiropractor. He is an expert on this structure / function issue.

So much to this. But, I have been reading about vagus nerve dysfunction. Think this is very relevant. The vagus nerve runs right by the atlas, and can be impacted by instability/ dislocation in this area. Diana Driscoll had discussed how a nicotine patch helped her have a bowel movement after 11 days. Geez, I shut down for 6 weeks at one point. Nothing helped.

But apparently the vagus nerve also affects/ communicates metabolic issues. Trying to stay on topic here.

 

[Cort]

I think so many people, including highly educated physicians, get depression all wrong. In fact, they misconstrue what a "psychological disorder" is at its core. There are clear physical differences in so called psychological disorders. That is why medications that affect serotonin frequently work. Most psychiatrists know that they have barely begun to understand the physical causes of "psychological disorders".

Unfortunately, psychological illnesses still have a huge stigma attached to them, leading people to misunderstand their seriousness and their physical causes and symptoms.
I think this is why comparing ME/CFS to depression is seen as an insult, and makes ME/CFS patients so angry.

Hopefully people will understand that at least in this case it revealed that not all depression is psychological; that some people who are being diagnosed with depression actually have a metabolic defect.

I know it takes years for this stuff to filter down to the doctors, though.

 

[Aidan Walsh]

My question on here is does anyone know good vitamins minerals that are safe & carry no fructose sucrose any type sugars & are Wheat Free etc...I am also looking for a good iron supplement plus folic acid? thanks

 

[Aidan Walsh]

@PamJ
@Issie
Yes, scoliosis and the various forms of neural tube defects ( from spina bifida occulta to more serious forms) all have higher rates of Chiari. Neurosurgeon Michael Rosner ( a brilliant, wonderful person) discusses how Chiari malformations are complex and individuals demonstrate a number of different anomalies in the lower skull and upper neck which affect CSF flow and pressures.

It is interesting that we are the only mammals that have spina bifida/ spina bifida occulta. King Charles Spaniels sometimes get syringomyelia. The presence of EDS in the population is so interesting. Is this an evolutionary compensation for something??? An important, interesting book is The Downside of Upright Posture by Michael Flanagan, DC, neurological trained chiropractor. He is an expert on this structure / function issue.

So much to this. But, I have been reading about vagus nerve dysfunction. Think this is very relevant. The vagus nerve runs right by the atlas, and can be impacted by instability/ dislocation in this area. Diana Driscoll had discussed how a nicotine patch helped her have a bowel movement after 11 days. Geez, I shut down for 6 weeks at one point. Nothing helped.

But apparently the vagus nerve also affects/ communicates metabolic issues. Trying to stay on topic here.

Vagus Nerve issues can also result from abdominal surgery even appendix & it can also occur from injuries etc etc...

 

[Aidan Walsh]

I think so many people, including highly educated physicians, get depression all wrong. In fact, they misconstrue what a "psychological disorder" is at its core. There are clear physical differences in so called psychological disorders. That is why medications that affect serotonin frequently work. Most psychiatrists know that they have barely begun to understand the physical causes of "psychological disorders".

Unfortunately, psychological illnesses still have a huge stigma attached to them, leading people to misunderstand their seriousness and their physical causes and symptoms.
I think this is why comparing ME/CFS to depression is seen as an insult, and makes ME/CFS patients so angry.

There are many with CFS/ME/EDS who have low folic acid even iron & think their ranges are normal plus those findings in USA were in spinal fluids which is much different than blood work so Yes numerous with CFS could benefit from above it just might be all that is wrong with them...

 

[Aidan Walsh]

My mom's first, stillborn child had spina bifida.
Issie

How did they diagnose your Metabolic Syndrome? bloods or other tests? Can it be done Privately through a Lab?