November 21, 2018, 06:02:43 AM *
Welcome, Guest. Please login or register.
Did you miss your activation email?

Login with username, password and session length
Pages: [1]   Go Down
Print
Author Topic: CSF, ME & Nutrigenomics - Richard van Konynenburg PhD  (Read 1799 times)
0 Members and 1 Guest are viewing this topic.
TJ
Senior Member
****
Offline Offline

Gender: Male
Posts: 563


« on: June 21, 2014, 01:58:45 PM »

I found this presentation on Youtube by Richard van Konynenburg very interesting.  It is in 3 parts (approx 3 hours). Nutrigenomics is the study of the effects of foods and food constituents on gene expression. Richard van Konynenburg had a working hypothesis that certain gene traits ultimately lead to a biochemical cascade that causes glutathione depletion, which he believes is responsible for many of the symptoms of CFS/ME.  The second video is quite advanced and I found it quite difficult to follow and absorb (ATP, methylation deficit, Krebs cycle, mitochondrial dysfunction).  I think if you jump from session 1 to session 3 you can still follow without it being too disjointed.

The third video is the results and case studies of 30 females with CFS that were given specialist guided high supplements of sublingual hydroxocobalamin (Vit B12), tetrahydrofolate, folic acid/folinic acid, phospholipids and fatty acids.  The case studies are easy to follow and very interesting.  Although a small study the results surprised me and lead me to believe that further studies need to be undertaken in this direction.  Another thing that surprised me was that glutathione levels came back to within normal levels without glutathione supplements which supports his biochemical cascade effect.

Session 1 (approx 1hour, 20 mins) http://youtu.be/rgXk6iuWRYU

Session 2 (approx 50 mins) http://youtu.be/SEq5bSjD_fs

Session 3 (approx 1hour 25 mins) http://youtu.be/JDLgW_RkzTc
 
Logged
agapanthus
Staff
Lifetime Member
*
Offline Offline

Gender: Female
Posts: 8318


I'm a CFS sufferer...


« Reply #1 on: June 21, 2014, 03:29:08 PM »

Thank you Talen for posting. I have tried to read some of his hypotheses re methylation issues and Dr Myhill has some info on her site (or used to anyway...) based on Rich's theories. He used to post regularly on the big ME/CFS forum Phoenix Rising and tragically died suddenly 2 years ago now I think from a heart attack.

He didn't have ME/CFS himself but was very interested in the science and tried to help lots of people to test out his methylation theories and some people did improve as a result. I think he would be the first to say how complex the issues are of course and it sounds as if the 2nd film deals with this. There is another man on Phoenix Rising who came up with a protocol re methylation that slightly differed from Rich's protocol, but along the same lines.

I think that the gene defect that has been identified is the MTHFR gene - some people are having their genes checked out in the US in particular to see if they have this, so they can use appropriate supplements if they know they have it.

I will bookmark this and try and watch at some point! I am v much a NON scientist and struggle with scientific info so anything I write on the subject may be a little wrong.

I have been using some of the supplements that are supposed to be good for methylation for some time (not all of those listed here) and I guess I am more mobile than most, but have never been as severe as some either, so it's hard to know what's what! I have injected Methyl B12 for a year for example.....

Logged

TJ
Senior Member
****
Offline Offline

Gender: Male
Posts: 563


« Reply #2 on: June 21, 2014, 09:07:39 PM »

Thanks for the info Aggie.  The sessions were only posted a few months ago so presumed they were recent.  I didn't know that Rich had died (RIP).  I have done quite a bit of reading and learned that blood (serum) levels do not necessarily reflect reflect intracellular levels.  I have methylcobalamin on order.  Rich also mentioned cortisol levels initially being high then falling very low with CSF.  My cortisol level was very low and yet my endocrinologist did not relate it to CSF.
Logged
agapanthus
Staff
Lifetime Member
*
Offline Offline

Gender: Female
Posts: 8318


I'm a CFS sufferer...


« Reply #3 on: June 22, 2014, 07:24:41 AM »

Just posted you a reply Talen and managed to delete it all! Grr!

I mentioned about the serum levels versus cellular levels - yes, I think this is true for a number of things. I have hypothyroidism, and the TSH is seen as the gold standard by Drs and endos, even if the patient still feels unwell, and yet those patients who take their health into their own hands and maybe try NDT or T3 only can often improve, as it is possible that they are not converting T4 to T3 in their cells, but the blood test will say they are fine.

Re the cortisol.... have forgotten if you had the mainstream blood test for this (short synacthen test?) or the non mainstream saliva test. If it was the latter then the NHS (other than Southampton Hospital....) do not recognise this test, though some would say it's a better indicator of adrenal glands that are beginning to struggle.

If it was mainstream then maybe it just reflects the specialist's prejudice re the idea of CFS as a psych condition? As far as I know they only recognise Addison's which means you are then at crisis level - seems an odd thing to me - how do they think you get to that position as surely you have to travel there over time, before you get to that crisis.
Logged

TJ
Senior Member
****
Offline Offline

Gender: Male
Posts: 563


« Reply #4 on: June 22, 2014, 10:09:06 AM »

Hi Aggie,

I only had a 9am serum cortisol check.  She has put me on low dose hydrocortisone and they are going to do the short synacthen test at Salford Chronic Fatigue Diagnostic Service.  I don't think it is Addison´s as blood pressure is low with this and mine is very high.  In fact I am wondering if that is what has been causing my headaches the last few days.  168/110 yesterday and I am only 50.
Logged
TJ
Senior Member
****
Offline Offline

Gender: Male
Posts: 563


« Reply #5 on: June 22, 2014, 08:12:33 PM »

Hi Aggie,

I found a webinar by Dr Myhill uploaded to Youtube a month ago.  Interesting and easy to follow.

http://youtu.be/BG_v6-U1a8g

Talen
Logged
agapanthus
Staff
Lifetime Member
*
Offline Offline

Gender: Female
Posts: 8318


I'm a CFS sufferer...


« Reply #6 on: June 23, 2014, 06:25:33 PM »

Thank you Talen. I will bookmark this one too to watch in a quiet moment.  thumbsup
Logged

Pages: [1]   Go Up
Print
Jump to:  

Black Rain by Crip

© Chronic Fatigue Syndrome

Powered by SMF 1.1.21 | SMF © 2015, Simple Machines
XHTML | CSS