Hi everyone,
I recently had the Acumen mito tests done through my nutritionist. We have since gone through the results together, however I am still not sure what the results mean?
Was hoping someone who has had the tests previously could give some interpretation?
I would be very grateful of any help anyone could offer. My head is swimming at the moment. I am hoping to use the results to help me formulate a plan of action.
Many thanks
GoodVibes
Hello.
If you ordered this test from Dr Myhill, you should have received a letter from Dr Myhill with her comments. Did you? The Letter usually explains what to try next in terms of nutritional support. If not, see if you paid for 'interpretation', I forget if it's 'free' or not.
Either way, I found this test useful, as it was one of many that show something unexpected is going on in my immune system, which is a very small part of proving a chronic disease state, and deflecting the currently xenophobic state approved message, that unexplained ME = imaginary = not needs to be researched and treated.
In basic terms, your test result is potentially useful in a small way as it shows your white blood cell ATP (energy) is poor using a scale set by the assay designer of course. It doesn't explain why (could be infection), but it doesn't purport to either.
One thing that caught my eye on your result is this:
In this non specific ME test, your DNA oxidative stress levels are normal. This doesn't usually happen in ME or this specific test, as oxidative stress tends to be elevated in patients testing privately, including in published research such as on F2 Isoprostanes.
If you want to look at your anti oxidant capacity in the UK (nb: not the same as a oxidative stress levels), you can buy tests yourself if funds allow. The NHS won't offer these tests to anyone. That's why private testing is a must
with ME or CFS, because without access to private test, you won't a single piece of evidence you are sick at the time of diagnosis and may risk being abused by medical professionals who think they are helping you, by 'de medicalising' your illness!
Here's a few tests to compare to your DNA damage test:
DNA Oxidative Damage in Urine (Doctors Data)
8-OHdG
http://bluehorizonmedicals.co.uk/
Antioxidant Profile (Doctor's Laboratory)
Serum Cerulplasmin, Serum Copper, Red Cell GSH-PX, Red Cell Copper, Red Cell Fragility, Functional SODase Inhibition, Platelet aggregation, 1um ADP, 2um ADP, 5um ADP
https://www.medichecks.com/find-a-test/test/Antioxidant-Profile_AOXI/
Advanced Oxidative Stress (Dunwoody Labs)
SOD 1, SOD 11, Reduced Glutathione, Total Glutathione, F2-Isoprostane, 8-OHdG, Glutathione Peroxidase
http://www.invivoclinical.co.uk/
Antioxidant Profile (Biolab)
Ceruloplasmin, Copper, Copper (Red Cell), GSHPx-1, GSHPx-3, Red Cell Fragility (H202), Superoxide Dismutase
http://www.biolab.co.uk/index.php/cmsid__biolab_test/Antioxidant_Profile
If you are severely affected, or chronically ill with an inflammatory disease, oxidative stress can be high, but yours is low! If you want the best chance to recover, this is good though, it may even be problematic because it would imply you may not have ME. Yet ME in the UK is CFS and CFS is CF and CFS doesn't need anything ever to be wrong with you. So it's all a muddle.
Whenever I can, I always recheck abnormal tests, and also I make sure with the lab that the sample got there within the usual 24hr time limit.
Your test
may be pointing to an ME type disease (Poor ATP cell function - of one cell type), or may not
at all. This is the unfortunate consequence of a fatigue based diagnosis, that has no screening test, and is often diagnosed by lazy doctors who tell practically anyone with unexplained symptoms they have ME or CFS, just to get them out of their doctor's office hoping they don't return - aka Heart Sink patients.
Meanwhile the patient is left thinking what on earth to do next, who to turn to and can be influenced positively and negatively by reports of good and bad tests.
Lastly, we are then in the problem area of assay usefulness over promotion, or denial, because you chose to be independent and went outside the NHS system that doesn't offer anything of a biomedical nature. (Oxidative stress tests in my opinion are well established as showing evidence of Free Radical Production) and thus a form of inflammation that shouldn't be there if found at high levels when no taken after exercise.
I would say your test is useful, but it's not diagnostic - however, it doesn't claim to be. All it does is measure the level of ATP in a type of white blood cell, on one moment it was taken out of your arm. This was clearly abnormal.
Personally speaking, I would wait a few months, and re-test to see if you get similar or indeed
divergent test results.
The problem with having an ME or CFS diagnosis and keeping with the NHS system:
1) You have no idea what subset you are in, or evidence how disabled you are compared to other with 'CFS/ME'
2) No idea what chronic infections you may have (not tested for).
3) No idea of levels of inflammation (not tested for)
4) No idea of what your autonomic nervous system is doing (not tested for).
5) No idea of cardiac output/Vo2 Max/Lactate threshold.
6) No idea of cognitive dysfunction as know psychometric testing is performed (Tests that include IQ)
7) No idea if you suffer from low blood volume
8) No idea if you have undiagnosed osteoporosis or arthritis causing pain.
The list is endless.
So you have two choices. Go with the state approved voice of no need to test as there is no 'ME test', or keep to some ideas (based on CFS biomedical research) and test for more 'exotic' finding that
can show some odd findings.
That's why I approve of private tests, backed by research.
Yours and mine and everyone else's positive ACUMEN mitochondrial lymphocyte test, doesn't show you have 'classical' mitochondrial disease, but the ATP test, like yours and so many other PWME, is very poor and this could possibly tie in with explanations or theories of INFECTIONS leading to White blood cell infiltration/autoimmunity/inflammation.
Such as this paper:
PLoS One. 2013 Nov 28;8(11):e81155. doi: 10.1371/journal.pone.0081155. eCollection 2013.
Epitopes of microbial and human heat shock protein 60 and their recognition in myalgic encephalomyelitis. Elfaitouri A1, Herrmann B, Bölin-Wiener A, Wang Y, Gottfries CG, Zachrisson O, Pipkorn R, Rönnblom L, Blomberg J.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3842916/
Your ACUMEN test result is indeed not mind blowing, but it might be worth filing in safe place, if it ties in with future, more influential research to do with ATP dysfunction in ME or CFS.
I'd stick with that view point, rather than getting into a skirmish with an NHS doctor, who naturally won't know what ATP is never mind think it's associated to someone with a 'belief' in ME, which they think is chronic fatigue.
