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

[Francis Martin]

Have you tried contacting the European Commissioner for Health and Food Safety, Vytenis Andriukaitis who is also Lithuanian Commissioner to the EU? Someone ought to be telling him the history and current events (eg,PACE-wise) of ME, including in re Karina Hansen. I first came across his name due to a very brave and positive role he had played in when in the Lithuanian parliament about facing (accurately) the country's history in the Shoah. (He has since become better known due to a viral video of his face pan at Nigel Farage's garbage speech in the European Parliament.)

Sorry for the delay in replying , from memory (and in short), I tried the European commission via their invitation to make a suggestion re possible things to fund under Horizon 20?? or whatever the current funding round is titled I was told that this was not the sort of thing the would fund. I'm not kidding or misquoting I replied that since it ticket the criteria "health" i.e. affecting 1 million people then I couldn't see how it didn't meet the criteria. It also ticks other criteria re innovation in healthcare and social policy (exclusion of people with ME/CFS from society). I did feel that reciting their own policy as justification may have caused then to resent the suggestion; hence my suggestion that someone else tries. Also, I'm in the UK and the UK is leaving Europe, so not much leverage there.

Linda Tannenbaum (CEO/President OMF) spoke in Northern Ireland a few months ago and (from memory) seemed to suggest that validating the blood test (metabolmics - Mass Spectrometry) was on the OMF's cards. So, if they can deliver a validated test then that would in my view move things on. Still, in my view worth, try Europe and the UK All Party Parliamentary Group etc to see if they could progress this or fund further work on a blood test.

Possibly challenging the European Commission stance on SOCIAL MEDIA is the way to go i.e. their stance that funding research to develop a blood test for ME/CFS (which affects roughly 1 million EC citizens) is not the sort of thing they do. Same goes for the UK All Party Parliamentary Group on ME.

 

[Aidan Walsh]

I still could not find that link you mentioned above @Merida

thanks for the Info. links appreciated lots X X

 

[Francis Martin]

thanks for the Info. links appreciated lots X X

When I read this I thought you really have been up too long.

Re syringomyelia and chiari, I thought these were now diagnosed with MRI i.e. of the spinal cord/brain. I'm slightly interested to know how it ended up on this thread.

Here's something from the OMF foundation you may be interested in

Natural Treatments For Mild Cognitive Impairment — Might these also help the “fog” of FM and CFS? By Richard N. Podell, M.D., MPH

Hanson's metabolmics study used mass spectrometry. The B12 deficiency examined in the above OMF article/paper can be diagnosed from mass spectrometry data. Similarly the elevated levels of homocystein referred to in this article/paper can be measured using mass spectrometry. So a mass spectrometry blood test for ME/CFS could potentially also look at other undiagnosed conditions such as B12 deficiency and elevated homocystein.

 

[Francis Martin]

Follow ME in Denmark has an interesting article asking "Is GRAMD1A involved in the dysregulated sterol and sphingolipid homeostasis in ME patients?"

The article refers to the following papers:
1) "GRAM domain proteins specialize functionally distinct ER-PM contact sites in human cells" by Besprozvannaya et al [February 2018]; and
2) "Molecular basis for sterol transport by START-like lipid transfer domains". EMBO J. 2018 Feb 21. Horenkamp et al [February 2018]. GRAMD1A is a sterol transporter; and
3) "Epigenetic modifications and glucocorticoid sensitivity in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)" by De Vega et al. The most hypermethylated gene associated with quality of life in ME patients was GRAMD1A.


Grateful if someone with more knowledge would comment. I.e. do the above publications help to explain the altered metabolism?

 

[Aidan Walsh]

I doubt their work will pan out & also he mentions 75% in the article...The cause has already been found by Dr. Milner at NIH/NIAID multiple copies of the tryptase gene some have 2, 3 or 4 copies there are now 2 groups on Facebook who the majority have been tested for Alpha Trytasemia & are Positives the Groups on Facebook are Hereditary

Tryptasemia a Commercial test will come out very soon from a Houston Diagnostic Lab they are now accepting 1,000 patients & family members in a larger study buy one must have done already a tryptase blood test, anything above 8 is very likely multiple copies of tryptase they also suggest all Family members run a tryptase blood test

as well...Some are very high some are low...The normal range is 10 but above 8 is likely more than one copy, I will be submitting my blood to NIH/NIAID soon...Some with Alpha Tryptasemia also could have one Family member with CVID as well but I do not know what percent have this combined...My opinion is it is Genetic, not

metabolomic as suggested & EDS is 100% the same illness a Genetic Family Trait

 

[Aidan Walsh]

​

When I read this I thought you really have been up too long.

Re syringomyelia and chiari, I thought these were now diagnosed with MRI i.e. of the spinal cord/brain. I'm slightly interested to know how it ended up on this thread.

Here's something from the OMF foundation you may be interested in

Hanson's metabolmics study used mass spectrometry. The B12 deficiency examined in the above OMF article/paper can be diagnosed from mass spectrometry data. Similarly, the elevated levels of homocystein referred to in this article/paper can be measured using mass spectrometry. So a mass spectrometry blood test for ME/CFS could potentially also look at other undiagnosed conditions such as B12 deficiency and elevated homocystein.

In the UK I was told a result of B12 at 330 was Normal but in North America, anything below 550 is considered a deficiency I think they are Mad in this Country when it comes to Vitamins & Minerals...

 

[Francis Martin]

Follow ME in Denmark has an interesting article asking "Is GRAMD1A involved in the dysregulated sterol and sphingolipid homeostasis in ME patients?"

The article refers to the following papers:
1) "GRAM domain proteins specialize functionally distinct ER-PM contact sites in human cells" by Besprozvannaya et al [February 2018]; and
2) "Molecular basis for sterol transport by START-like lipid transfer domains". EMBO J. 2018 Feb 21. Horenkamp et al [February 2018]. GRAMD1A is a sterol transporter; and
3) "Epigenetic modifications and glucocorticoid sensitivity in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)" by De Vega et al. The most hypermethylated gene associated with quality of life in ME patients was GRAMD1A.


Grateful if someone with more knowledge would comment. I.e. do the above publications help to explain the altered metabolism?

I got a reply via Phoenix Rising:

"I emailed Will De Vega, his reply:

So for this particular finding on GRAMD1A, we disregarded case/control status and treated all subjects on a continuum to capture the mixed nature of the patient population. What the results suggest is that changes in the methylation of the GRAMD1A promoter region are linked to overall quality of life. Since there appears to be an average increase in methylation in ME compared to controls, this means that potential changes in GRAMD1A may have a role in disease severity. Classically, increased methylation in promoter regions lead to a decrease in expression of this gene, which may lead to differences in production of this protein and on its function. At most, we can say that there is a potential association between methylation and dysregulated cell signaling. However, we need additional studies to confirm this link between increased DNA methylation in GRAMD1A and its impact on downstream expression and function as we were unable to do this with our samples.

He also said:

In terms of ME research, our latest study which describes potential ME subtypes based on DNA methylation and health scores should be publicly available soon. We also submitted a different study that examines the genomic and epigenomic interactions in ME, which is currently under peer review."

 

[Francis Martin]

In the UK I was told a result of B12 at 330 was Normal but in North America, anything below 550 is considered a deficiency I think they are Mad in this Country when it comes to Vitamins & Minerals...

I worked as a science technican years ago. About 30 years ago there was a problem with the test used for B12 (immuno assay - i.e. antibody based test).

Interestingly Ron Davis discusses a technique developed at Stanford to improve immuno assays; you'll find the full interview on the OMF site ["News" "Experts Blog"]. Here are a few extracts:
"method called a proximity ligation assay, or PLA, which converts the biomarker into a DNA sequence"---
"Davis sees potential for the technique to help detect biomarkers of diseases with high rates of false positives and negatives,"---
"Davis said he hopes clinics and researchers will raise their expectations of biomarker detection methods. “People tolerate the current method because they think, ‘Well this is the technology, what are we going to do?’” he said. “But now we actually can do something about it.”"

Also, I think there's an argument that you should test for homocystein and folate i.e. as well as B12.

Here's a publication:
"Homocysteine and methylmalonic acid as indicators of folate and vitamin B12 deficiency in pregnancy" by McMullin MF et al. Here's an extract regarding B12 deficiency: "a significant inverse correlation was found between methylmalonic acid and vitamin B12". You can measure methylmalonic acid i.e. to test for B12 deficiency.

If your interested in seeing an improved B12 test then you could suggest that they switch to either Ron Davis's method or measure methylmalonic acid. You could try the following: NICE (UK and mired in controversy regarding PACE); Horizon 2020 (European Union Science Fund) and NIH (USA). Women are predominantly affected by B12/folate deficiency you could try using that fact to generate support for an improved B12 test.

Horizon 2020 (European Union Science Fund) has provided 40 million euros/dollar, in 10 years, for research into developing a test for Lyme disease. ME/CFS received no funding.

 

[Aidan Walsh]

I worked as a science technican years ago. About 30 years ago there was a problem with the test used for B12 (immuno assay - i.e. antibody based test).

Interestingly Ron Davis discusses a technique developed at Stanford to improve immuno assays; you'll find the full interview on the OMF site ["News" "Experts Blog"]. Here are a few extracts:
"method called a proximity ligation assay, or PLA, which converts the biomarker into a DNA sequence"---
"Davis sees potential for the technique to help detect biomarkers of diseases with high rates of false positives and negatives,"---
"Davis said he hopes clinics and researchers will raise their expectations of biomarker detection methods. “People tolerate the current method because they think, ‘Well this is the technology, what are we going to do?’” he said. “But now we actually can do something about it.”"

Also, I think there's an argument that you should test for homocystein and folate i.e. as well as B12.

Here's a publication:
"Homocysteine and methylmalonic acid as indicators of folate and vitamin B12 deficiency in pregnancy" by McMullin MF et al. Here's an extract regarding B12 deficiency: "a significant inverse correlation was found between methylmalonic acid and vitamin B12". You can measure methylmalonic acid i.e. to test for B12 deficiency.

If your interested in seeing an improved B12 test then you could suggest that they switch to either Ron Davis's method or measure methylmalonic acid. You could try the following: NICE (UK and mired in controversy regarding PACE); Horizon 2020 (European Union Science Fund) and NIH (USA). Women are predominantly affected by B12/folate deficiency you could try using that fact to generate support for an improved B12 test.

Horizon 2020 (European Union Science Fund) has provided 40 million euros/dollar, in 10 years, for research into developing a test for Lyme disease. ME/CFS received no funding.

Thanks, Vitamin B-12 is also something as well in Small Fiber Polyneuropathy or (aaSFPN) apparent autoimmune Small Fiber Polyneuropathy but also correcting B-12 in these conditions never seems to help the same thing goes for Vitamin D levels which I used only to turn out mine reached 900+ taking Vitamin D3...One finding in the USA

is spinal fluid taps measuring B4 Deficiencies...If we are in a hypometabolic state there could be a viable reason & also I have seen countless taking multiple B Vitamins only to become toxic...One thing is certain is Hereditary Fructose Intolerance does go with CFS EDS the question is what percentage & how many are taking

vitamins/minerals with (HFI) is actually Poison if they contain Sucrose Fructose Sorbitol ingredients...Even a store bought bread has Sucrose...A good reason also why countless get 10x worse on medicines or Hospital procedures that carry these (HFI) ingredients...Synthetic Fructose invented in a Japanese Lab is now in countless foods &

people thinking taking Fruits daily could be helpful in ME/CFS EDS could be a Death sentence same as B12 Pills or injections

 

[Aidan Walsh]

Another thing that does come up in some EDS3 can be misdiagnosed some have instead EDSIX a copper deficiency instead anything under 75 likely EDSIX a blood serum Copper test