Mitochondrial Function Profile (Acumen Laboratories, Biolab) via Dr. Myhill
- Thread starter eric_s
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Which SOD SNPs do you have, and what's your source for thinking that they're a problem?
@Valentijn I'm +/+ for SOD, SOD2 A16V
I have extremely poor sun tolerance - it's never been strong, but post-CFS it's gotten VERY weak... I crash even with a hat, sunscreen and long sleeves on. I basically can't be outside during daytime hours.
I read somewhere that SOD is needed to neutralize the oxidation from the sun's rays. I tried supplemental Extramel SOD extract and my sun tolerance improved quite a bit.
I went off it (due to expense) and now I am back to "crash after being outside for 15- 20 minutes." Living in a hot, tropical place is it socially and practically debilitating.
I also read that for the body to make enough SOD you have to have copper, zinc and magnese in the proper ranges. I was tested to have rather high copper and low zinc. In this post @carolwxyz99 talks about how she normalized her SOD levels by detoxing nickel, getting rid of DNA adducts.
Dr. Myhill talks a lot about SODase (superoxide dismutase) genes being blocked due to toxins, adducts.
I am guessing that this is what's wrong with me?
I have extremely poor sun tolerance - it's never been strong, but post-CFS it's gotten VERY weak... I crash even with a hat, sunscreen and long sleeves on. I basically can't be outside during daytime hours.
I read somewhere that SOD is needed to neutralize the oxidation from the sun's rays. I tried supplemental Extramel SOD extract and my sun tolerance improved quite a bit.
I went off it (due to expense) and now I am back to "crash after being outside for 15- 20 minutes." Living in a hot, tropical place is it socially and practically debilitating.
I also read that for the body to make enough SOD you have to have copper, zinc and magnese in the proper ranges. I was tested to have rather high copper and low zinc. In this post @carolwxyz99 talks about how she normalized her SOD levels by detoxing nickel, getting rid of DNA adducts.
Dr. Myhill talks a lot about SODase (superoxide dismutase) genes being blocked due to toxins, adducts.
I am guessing that this is what's wrong with me?
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Do you have the rs number(s)? And are you talking about SOD1, SOD2, or both?
Sea
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SOD A16V = rs4880
@Valentijn looks like I'm:
SOD2 rs2758331 +/+
SOD3 rs2855262 +/-
SOD2 A16V rs4880 +/+
I'm high free copper, low plasma zinc.. And suspected metal toxic: taking a decent dose of multimineral ( 30mg zinc & 5mg manganese, etc) causes metal detox type symptoms.
Do I need a lot of manganese or ?????
SOD2 rs2758331 +/+
SOD3 rs2855262 +/-
SOD2 A16V rs4880 +/+
I'm high free copper, low plasma zinc.. And suspected metal toxic: taking a decent dose of multimineral ( 30mg zinc & 5mg manganese, etc) causes metal detox type symptoms.
Do I need a lot of manganese or ?????
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Gondwanaland
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@Sherpa perhaps you have been overdoing with B2. Even though B2 is recommended if you have light sensitivity, IME my light sensitivity increased at the same time as I increased my B2 dosage last year.
Gondwanaland
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Not that those +/+ SNPs don't mean anything, but B2 mobilizes Cu and Fe big time.
I can't find any research indicating that rs2758331 or rs2855262 could cause problems. Additionally, all genotypes are extremely common for each of those.
Similarly, rs4880 probably isn't doing much, at least not in a consistent or predictable manner, since the research shows conflicting accounts of enzyme activity and disease risk. I've discussed it a bit more previously at http://forums.phoenixrising.me/inde...mutation-anyone-else.23147/page-5#post-457587
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Hey everyone
& Justy ^^ ( I see you posted quite a bit on this thread)
Has anyone successfully used this test as proof to qualify for disability payments?
Andy
P.S. I'm a US citizen
It has helped me in the UK to get disability benefits, but no idea how it would work in the U.S
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Hi Justy
I just read your story on youcaring.com and wanted to ask- what about just moving to Brussels? Is this possible? It seems like that would, at the very least, be a step closer to regaining your health
Unfortunately I have 4 children and a husband who has to work and am unable to care for myself all the time, so this is not an option, but something we would have done if it was possible - thanks for thinking of me!Hi Justy
I just read your story on youcaring.com and wanted to ask- what about just moving to Brussels? Is this possible? It seems like that would, at the very least, be a step closer to regaining your health
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Hi guys, been reading through your posts and found them very interesting re. Dr Myhill's assertions, the mito test and the proposed solution (package of expensive supplements). I had been in two minds - the website info seems plausible but always cautious when there is a 'product' to be sold. I was recently researching vital reds recently and picked up comments about the role of glutathione (I think possibly by Rich from this forum) and this brought me full circle back to Dr Myhill's position.
Noted through this thread that for some supplements have made no difference. Has anyone who originally posted their ATP profile results within this forum used Dr Myhill's specific supplement regimen with significant beneficial effect? I am reluctant to go that route without first understanding that the issue has been identified - and I am now seeing from comments here that mito is only part of the story in that it illustrates an impact but not necessarily the cause (although in my limited view it is expressed as cause rather than effect on Dr Myhill's website).
I am now minded to try to persuade my GP to go the glutathione route via the labs referenced - he was already amenable to requesting CCG funding for the mito tests which are on hold due to workload as stated. (At least, interpretation of, I'm wondering whether the tests are available direct from the labs.)
I did find some public email correspondence between pathology bods querying the validity of supplements due to lack of evidence directly in relation to patients of Dr Myhill who were presenting their test results to other health professionals.
Carol
Noted through this thread that for some supplements have made no difference. Has anyone who originally posted their ATP profile results within this forum used Dr Myhill's specific supplement regimen with significant beneficial effect? I am reluctant to go that route without first understanding that the issue has been identified - and I am now seeing from comments here that mito is only part of the story in that it illustrates an impact but not necessarily the cause (although in my limited view it is expressed as cause rather than effect on Dr Myhill's website).
I am now minded to try to persuade my GP to go the glutathione route via the labs referenced - he was already amenable to requesting CCG funding for the mito tests which are on hold due to workload as stated. (At least, interpretation of, I'm wondering whether the tests are available direct from the labs.)
I did find some public email correspondence between pathology bods querying the validity of supplements due to lack of evidence directly in relation to patients of Dr Myhill who were presenting their test results to other health professionals.
Carol
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charles shepherd
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The MEA Ramsay Research Fund is funding, or has been funding, four separate research studies into the role of mitochondrial dysfunction in ME/CFS and how it should be assessed - including the fairly expensive commercial test being referred to in this discussion
MEA funded research into the commercial mitochondrial function test:
http://www.meassociation.org.uk/201...-further-mitochondrial-research-20-july-2015/
The main problem here is that this quite expensive commercial test has not been validated by any other independent researchers - which is why it is not used (and is often instantly dismissed) by NHS doctors who specialise in muscle and mitochondrial disease
The results from the research we have funded are now being analysed, along with some further laboratory work which has been done on this commercial test by two other researchers. The results will then be submitted for publication. Once they have been published, the MEA will be making a further statement on this test.
In our present state of knowledge, there is insufficient evidence to conclude that any of these commercial mitochondrial function test results are a reliable indicator of muscle or mitochondrial involvement or function in ME/CFS
And if this does need to be investigated, to rule out primary mitochondrial disease, then there are 'Gold Standard' NHS tests available (muscle biopsy, MRS etc) which can help to demonstrate if there is a significant degree of mitochondrial dysfunction present
So this is not a test that we currently recommend or endorse
MEA funded studies into mitochondrial dysfunction:
www.meassociation.org.uk/2016/03/me-association-to-fund-fourth-study-into-the-role-of-the-mitochondria-in-mecfs-10-march-2016/
Dr Charles Shepherd
Hon Medical Adviser, MEA
MEA funded research into the commercial mitochondrial function test:
http://www.meassociation.org.uk/201...-further-mitochondrial-research-20-july-2015/
The main problem here is that this quite expensive commercial test has not been validated by any other independent researchers - which is why it is not used (and is often instantly dismissed) by NHS doctors who specialise in muscle and mitochondrial disease
The results from the research we have funded are now being analysed, along with some further laboratory work which has been done on this commercial test by two other researchers. The results will then be submitted for publication. Once they have been published, the MEA will be making a further statement on this test.
In our present state of knowledge, there is insufficient evidence to conclude that any of these commercial mitochondrial function test results are a reliable indicator of muscle or mitochondrial involvement or function in ME/CFS
And if this does need to be investigated, to rule out primary mitochondrial disease, then there are 'Gold Standard' NHS tests available (muscle biopsy, MRS etc) which can help to demonstrate if there is a significant degree of mitochondrial dysfunction present
So this is not a test that we currently recommend or endorse
MEA funded studies into mitochondrial dysfunction:
www.meassociation.org.uk/2016/03/me-association-to-fund-fourth-study-into-the-role-of-the-mitochondria-in-mecfs-10-march-2016/
Dr Charles Shepherd
Hon Medical Adviser, MEA
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Thank you for your quick response and the further information. Really useful and much appreciated.
I have never met an NHS doctor who had a clue about mitochondrial function, even though it is basic GCSE PE stuff. Most claiming to have an interest in ME/CFS do not have a clue. I would not trust them to find their own backsides in a well lit room. I do not agree with the reason you stated why the NHS will NEVER use them IMO.
The NHS tests do not show what is blocking ADP-ATP. Nobody on the NHS is at the same level as Howard, he is brilliant. Tl Protein studies and DNA adducts testing are imperative IMO. We can actually find out what toxins are interfering with mitochondrial function.
Low cellular energy is CFS/ME. That is what is going on. Environmental toxins are definitely involved and the powers that be do not want to admit that. I do not trust anyone on the NHS. I do not trust the con men who run it. I certainly do not not trust anyone who works with Pharmaceutical companies.
Is aberrant mitochondrial function a major player in CFS/ME?
Is the sun hot?
People are very naive if they think the medical establishment want to help patients. There is no look for cures. That is not profitable.
Research 1st
Severe ME, POTS & MCAS.
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If it's of any help guys, there are other labs outside the UK that can measure mitochondrial function in the blood, albeit not as complex as the Accumen labs one.
I am not affiliated to the companies in anyway, just like to help patients who like myself are interested in tests regarding trying to figure out all the parts of their body not working including at a cellular level!
PM me if you want the details.
I am not affiliated to the companies in anyway, just like to help patients who like myself are interested in tests regarding trying to figure out all the parts of their body not working including at a cellular level!
PM me if you want the details.
Research 1st
Severe ME, POTS & MCAS.
- Messages
- 768
Some apparently brilliant people in academic circles are actually impressively functionally useless outside of their comfort zone of creating poisonous narratives that regurgitate mindless theories that never require a single piece of actual evidence to support their claims - Science.
The fact that anything consistent biologically (such as this Acumen test) is met with bizarre hostility in some parts is sadly, part of the territory. Remember recently NICE even bragged they don't care what the Americans are doing with biological CFS research, and that the UK position remains as it is - disease denial (ME = Chronic Fatigue F48.0 PACE criteria).
As disease associated mitochondrial dysfunction explains fatigue, then the unexplained (CFS/ME) is suddenly explained meaning ME must exist separate from the unexplained. This is not part of the agreed and well memorised script.
ME is meant to be contained within unexplained, for eternity because ME is said to be just ''a word patients like to use'', whilst we are told doctors (people who should be believed more than patients) prefer ''Chronic Fatigue Syndrome''.
If this dumb idea of ME as tiredness is exposed as scientific dishonesty, then people ask questions how this all happened and who started it off. And the answer is the Department of Health lobbied by psychiatry. They green lighted CFS/ME as ME and CFS/ME being unexplained long term tiredness - not pathogen associated autoimmunity leading to mitochondrial dysfunction and neuroinflammation - which the Acumen test begins to expose to all..
And there's your answer in the last line.
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Naive? No. Desperate for answers? Yes. Trying to navigate the myriad of "this is the underlying cause" whilst at the same time trying to get GP on board. Although having to take the lead myself, my GP was amenable to the Acumen test - it simply isn't available via Dr Myhill at this time.
There is more than one plausible answer out there. My head is spinning so much that it is perhaps better to my overall health to sit it out and wait for the definitive answer. Don't have the mental acuity for long enough to negotiate the underpinning biochemistry to properly evaluate the research myself.
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