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

[Merida]

@Aidan Walsh
You mentioned a genetic issue with fructose sensitivity. Go to : csfinfo.org. ( Chiari&Syringomyelia Foundation) . Read Jacob's Story. He is a boy who has fructose 'sensitivity' who finally got diagnosed with Chiari and syringomyelia.

 

[Aidan Walsh]

@Aidan Walsh
You mentioned a genetic issue with fructose sensitivity. Go to : csfinfo.org. ( Chiari&Syringomyelia Foundation) . Read Jacob's Story. He is a boy who has fructose 'sensitivity' who finally got diagnosed with Chiari and syringomyelia.

thanks, I never mentioned sensitivity I meant the Genetic form where the body is missing this Protein. 'hereditary fructose intolerance' (HFI) is a huge difference than what you explain...I have not read this Story yet but is he Positive to the adolase B Genetic type ??? If he is not then he does not know if he has (HFI). Even a Chiari can be a result of swelling in the Brain from eating these foods I have seen countless undergo Chiari surgery with no difference at all in the Health outcome in fact a lot get 10x worse.

 

[gkgk]

From Naviaux's study: 612 metabolites measured. 37 unusual (with a Q < .15)
From Hanson's study 361 metabolites measured. 32 unusual (with a Q < .15)

That looks like a complete fail, for both studies.
Q is false discovery rate.
With a Q of .15 and 612 metabolites, one would expect 91 false discoveries (on average).
With a Q of .15 and 361 metabolites, one would expect 54 false discoveries (on average).
Yet both studies found less than this; so it looks like a complete wiff for both of them.

Now, if they found the same metabolite had different values in CFS patients vs. controls, then that's less likely to be random. That would be a big finding. But so far, I have not see any specific metabolite that they both tested for, that they both found was consistently high (or low) in CFS patients compared to controls. Maybe someone will do a follow on a find one.

GKGK

 

[h3ro]

That looks like a complete fail, for both studies.
Q is false discovery rate.
With a Q of .15 and 612 metabolites, one would expect 91 false discoveries (on average).
With a Q of .15 and 361 metabolites, one would expect 54 false discoveries (on average).
Yet both studies found less than this; so it looks like a complete wiff for both of them.

Now, if they found the same metabolite had different values in CFS patients vs. controls, then that's less likely to be random. That would be a big finding. But so far, I have not see any specific metabolite that they both tested for, that they both found was consistently high (or low) in CFS patients compared to controls. Maybe someone will do a follow on a find one.

GKGK

I've been wondering about the contradiction between the 2 studies as well. They've been putting it down to different techniques / calibration of mass spectrometers, but this seems like a bit of a cop out.

Maybe you should strike up a discussion about this on PR? More likely to get responses there. Do post a link to the thread if you do.

 

[gkgk]

I've been wondering about the contradiction between the 2 studies as well. They've been putting it down to different techniques / calibration of mass spectrometers, but this seems like a bit of a cop out.

That is an obviously bogus explanation. Different techniques and different calibrations might lead to slightly different numbers, but if one study shows a metabolite is higher in people with the disease, but the other study shows the metabolite is the same in both patient and control groups, that has nothing to do with different techniques or calibrations! It's a sign that the study results conflict!

GKGK

 

[Francis Martin]

Hi,
I've only read some of the previous posts but I thought I'd point out that Jonas Bergquist (Uppsala University) gave a presentation at the Invest in ME conference in 2015 in which he presented data which suggested [from memory] that results from 50 patients in Sweden suggested that the may have a gylocoprotein disorder, lipid dysregulation. I watched the talk on the conference DVD. Unfortunately, I don't think the data has been published. The study used cerebrospinal fluid and the biomarkers were possibly neurotransmitters. Jonas/Maureen, Ron Davis were at the 2016 conference so I'm guessing that they would have compared notes. I wonder if Jonas's work may support the metabolomics study by Naviaux (and Hanson); the fact that Jonas used a different sample (cerebro spinal fluid) and possibly identified different biomarkers (neurotransmitters) may increase confidence in the metabolmics hypothesis.

To cover old ground (again) your Government used this technique (mass spectrometry) to test food (going rate is £200/$270 dollars per sample); you may wish to ask your elected representative whether it would be possible to test people as well as food! Mass spectrometry is beginning to be used in hospitals (e.g. I heard recently that some hospitals in the republic of ireland are using it). Perhaps the open medicine foundation will try to provide a testing service i.e. for a fixed cost; contact them and ask.

I tried to get funding to get the blood samples tested from the Sweedish cohort (30,000 euros total cost) i.e. to see if this would provide a blood test and was told by the European Commission that this is not the sort of thing they do. There are possibly 1 million ME/CFS sufferers in Europe, not to mention the possible benefits re diagnosis of treatment resistant depression, lymes disease etc

I tried the UK parliamentary group on ME (APPG ME) to see if they would use the Government food testing laboratories (FERA) to see if Jonas's work could be transferred into a blood test. I was told by the Secretariate to the APPG ME (the ME Association) that ---requesting a review of Jonas's work by Government laboratories (FERA) was outside the APPG ME's remit and -- would require interested researchers and funding--. A quote from a blog comes to mind with friends like that these ----.

Please contact your local representative/European Commission/UK parliamentary group on ME (APPG ME) and ask that research is commission to see if these research findings can be transferred into a blood based diagnostic test.

 

[Aidan Walsh]

@Aidan Walsh
You mentioned a genetic issue with fructose sensitivity. Go to : csfinfo.org. ( Chiari&Syringomyelia Foundation) . Read Jacob's Story. He is a boy who has fructose 'sensitivity' who finally got diagnosed with Chiari and syringomyelia.

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

 

[deboruth]

I have no idea except that Nath said it is very fine-tuned and can find out all sorts of stuff. I believe that the chamber was created many years ago but must have been upgraded significantly for him to say that. I would love to learn more about it.

Cort, why not call the press office for NIND and see if they can pull together some info on the metabolic set-up Nath is using?
If they can't tell you (or NIND doesn't have one) call the main NIH press office. We're paying their salaries. As a member of the press it's your right to ask.
I look forward to the info.

 

[deboruth]

Hi,
I've only read some of the previous posts but I thought I'd point out that Jonas Bergquist (Uppsala University) gave a presentation at the Invest in ME conference in 2015 in which he presented data which suggested [from memory] that results from 50 patients in Sweden suggested that the may have a gylocoprotein disorder, lipid dysregulation. I watched the talk on the conference DVD. Unfortunately, I don't think the data has been published. The study used cerebrospinal fluid and the biomarkers were possibly neurotransmitters. Jonas/Maureen, Ron Davis were at the 2016 conference so I'm guessing that they would have compared notes. I wonder if Jonas's work may support the metabolomics study by Naviaux (and Hanson); the fact that Jonas used a different sample (cerebro spinal fluid) and possibly identified different biomarkers (neurotransmitters) may increase confidence in the metabolmics hypothesis.

To cover old ground (again) your Government used this technique (mass spectrometry) to test food (going rate is £200/$270 dollars per sample); you may wish to ask your elected representative whether it would be possible to test people as well as food! Mass spectrometry is beginning to be used in hospitals (e.g. I heard recently that some hospitals in the republic of ireland are using it). Perhaps the open medicine foundation will try to provide a testing service i.e. for a fixed cost; contact them and ask.

I tried to get funding to get the blood samples tested from the Sweedish cohort (30,000 euros total cost) i.e. to see if this would provide a blood test and was told by the European Commission that this is not the sort of thing they do. There are possibly 1 million ME/CFS sufferers in Europe, not to mention the possible benefits re diagnosis of treatment resistant depression, lymes disease etc

I tried the UK parliamentary group on ME (APPG ME) to see if they would use the Government food testing laboratories (FERA) to see if Jonas's work could be transferred into a blood test. I was told by the Secretariate to the APPG ME (the ME Association) that ---requesting a review of Jonas's work by Government laboratories (FERA) was outside the APPG ME's remit and -- would require interested researchers and funding--. A quote from a blog comes to mind with friends like that these ----.

Please contact your local representative/European Commission/UK parliamentary group on ME (APPG ME) and ask that research is commission to see if these research findings can be transferred into a blood based diagnostic test.

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.)

 

[Maisie]

I just had my 23 and Me raw data analysed by Promethease. The most important finding so far is I am a carrier for PKU; however, I also have other mutations for it. My son fits the neurological descriptions, with headaches, depression, anxiety, panic attacks, ADHD--which I have but not to such a severe degree. I am trying to find out how to get tested for PKU as an adult. My doctor thinks I'm nuts. I have a strong hunch both of us are deficient in BH4. I would very much appreciate being told the exact blood tests I should ask for. If anyone knows, please let me know.

 

[susan murphy]

Dr. Naviaux in cahoots with Dr. Gordon are looking for CFS people to participate in a third metabolomics study. They are asking for a $1500 donation per person. In turn you will receive a report with over 500 metabolites and how your results compare to people with CFS and "normal" people. They need 10 people in each gender/age group with CFS before they will run the tests. I have signed up for this study. I would be willing to sponsor a female who is close to 55 (my age). I am looking for someone who experiences similar symptoms to mine. Please let me know if you are interested.

 

[Maisie]

Dr. Naviaux in cahoots with Dr. Gordon are looking for CFS people to participate in a third metabolomics study. They are asking for a $1500 donation per person. In turn you will receive a report with over 500 metabolites and how your results compare to people with CFS and "normal" people. They need 10 people in each gender/age group with CFS before they will run the tests. I have signed up for this study. I would be willing to sponsor a female who is close to 55 (my age). I am looking for someone who experiences similar symptoms to mine. Please let me know if you are interested.

Susan, I am interested, if you haven't found someone else. It is a generous offer, and I am conflicted about letting someone pay for this; however, I can't afford the cost at this time.

 

[Marilee Mouser]

Dr. Naviaux in cahoots with Dr. Gordon are looking for CFS people to participate in a third metabolomics study. They are asking for a $1500 donation per person. In turn you will receive a report with over 500 metabolites and how your results compare to people with CFS and "normal" people. They need 10 people in each gender/age group with CFS before they will run the tests. I have signed up for this study. I would be willing to sponsor a female who is close to 55 (my age). I am looking for someone who experiences similar symptoms to mine. Please let me know if you are interested.

 

[Marilee Mouser]

Dear Susan, I just turned 57. Diagnosis is ME/CFS since 2003. I just signed up for 3rd study, not knowing such a large donation was requested!!! Oops! Very excited about his work, so if Maisie for any reason cannot, I will volunteer! Thank you for supporting others with this illness. Having to retire early and going on SSDI has certainly left me unable to donate that much!!

 

[susan murphy]

Dear Susan, I just turned 57. Diagnosis is ME/CFS since 2003. I just signed up for 3rd study, not knowing such a large donation was requested!!! Oops! Very excited about his work, so if Maisie for any reason cannot, I will volunteer! Thank you for supporting others with this illness. Having to retire early and going on SSDI has certainly left me unable to donate that much!!

Hi!

I am looking for someone who has similar symptoms as mine. Please tell me your top 3 symptoms.

Thank you

 

[Remy]

I have a strong hunch both of us are deficient in BH4. I would very much appreciate being told the exact blood tests I should ask for. If anyone knows, please let me know.

Genova offers a biopterin/neopterin urine panel.

https://www.gdx.net/product/neopterin-biopterin-test-urine

 

[Marilee Mouser]

Hi!

I am looking for someone who has similar symptoms as mine. Please tell me your top 3 symptoms.

Thank you

1) The fatigue has been most debilitating for me. I was keeping up fine with my teaching duties, but meeting and research -- they suffered. So, I gave up teaching and eventually got SSDI. Are we so fatigued because our sleep isn't good? The sleep study proves I don't sleep well, I guess -- not sure if that's one symptom or two! 2) If I pace myself well, I can still be coherent and alive at 10 pm (my time!!). Any exertion that is terribly physical (clearing the 8" of snow off my car) takes a toll. I can do it for 5-8 min and then I have to take a rest. 3) I found myself searching for words (getting close, but not quite the right word), which has been really frustrating for me. I think they know now the pre-frontal cortex functions are impaired, so a decision that has to be made fast (e.g. am I getting on the freeway or staying on State Rd. depends on where I'm going and sometimes I have to think about that because I'm not sure!!). I guess we call it "brain fog". So, I would say these 3 symptoms/complaints have been most troublesome to me!

 

[fdotx]

1) The fatigue has been most debilitating for me. I was keeping up fine with my teaching duties, but meeting and research -- they suffered. So, I gave up teaching and eventually got SSDI. Are we so fatigued because our sleep isn't good? The sleep study proves I don't sleep well, I guess -- not sure if that's one symptom or two! 2) If I pace myself well, I can still be coherent and alive at 10 pm (my time!!). Any exertion that is terribly physical (clearing the 8" of snow off my car) takes a toll. I can do it for 5-8 min and then I have to take a rest. 3) I found myself searching for words (getting close, but not quite the right word), which has been really frustrating for me. I think they know now the pre-frontal cortex functions are impaired, so a decision that has to be made fast (e.g. am I getting on the freeway or staying on State Rd. depends on where I'm going and sometimes I have to think about that because I'm not sure!!). I guess we call it "brain fog". So, I would say these 3 symptoms/complaints have been most troublesome to me!

Hi Susan, I'm 63 so probably too far out of your age range, but I might be able to afford the 1500 - where does one sign up and is it necessary to fly to San Diego to get the blood draw? Thanks.

 

[fdotx]

Genova offers a biopterin/neopterin urine panel.

https://www.gdx.net/product/neopterin-biopterin-test-urine

Has anyone had an organic acid test, I think it's called. I listened to a webinar a few months ago with a Dr. David Brady and he and so many other of the functional medicine docs he interviewed said they couldn't practice without it, yet a doc I occasionally go to who is good to keep up on the latest research, hadn't heard of it. I just wonder if it tests a lot of these things that are being talked about on this thread.

 

[ariane lamo]

Finally it hits a major media outlet

what i d

Finally it hits a major media outlet

What i still don't like about the way journalist reffer themself about me/cfs is that they keep portraiting this as a cfs tired defective people, but they never mention the immune disfuntion part, they never mention that me/cfs person has an impaired difective disfuntional immune system & co infections of all kind do to this immune disfuntion, herpes viruses like in happen in AIDS that reactivare etc...
very low immunity.
that has being the main reason why the public the citizens are not more concern and involved in me/cfs....
like they are on hiv.
people have no idea that for all we know this is an infectious disease and a much worth epidemic than hiv itself