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Dr Myhill publishes second paper

Discussion in 'Latest ME/CFS Research' started by ISAS, Jul 2, 2012.

  1. ISAS

    ISAS

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    As already reported elsewhere Dr Myhill, in conjunction with fellow authors, Norman E Booth and John McLaren Howard, has had a follow up paper published concerning the 'mito test'. Dr Myhill is in the process of preparing a press release and as mentioned towards the end of this second paper, there is a third paper to follow. The full paper link is here http://www.ijcem.com/files/IJCEM1204005.pdf and the abstract can be found here http://www.ijcem.com/1204005A.html Please watch this space for the press release.
    Merry, taniaaust1, merylg and 2 others like this.
  2. justy

    justy Senior Member

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    Thanks for posting. All very interesting - look forward to the 3rd paper which discusses how the research can guide treatment. Interesting to note how important blockages in Translocator Proteins were found to be - mine was very notably blocked (TL in) also interesting that they discuss how this hasnt been studied by anyone else.

    Note the link to exercise studies as well.

    Pleased to see a bit more on cell free DNA which its hard to find much out about.

    Happy reading, Justy.
    merylg likes this.
  3. Aquila

    Aquila

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    Really interesting. Do you think the medical community will take notice of this? Do you think anyone will be interested enough to try and replicate the results? I couldn't see any comments on the site. I saw it was peer reviewed. I'm not sure if this means nobody reviewed it or we just can't see the comments. It would be really good to see them. I don't know enough about the paper to spot any flaws in the study.

    Justy I also got the test done and got a very low score including my TL being notabley blocked but the test was done 6 years ago and too be honest it hasn't come to much. I tried her regime for over a year and it didn't help me much.
  4. justy

    justy Senior Member

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    I'm surprised there isnt more interest in this paper around here - but then ive noticed that mito stuff never gets people excited!

    Aquila - i have had osme help from her approach, but most notably rest (makes sense with the ATP/mito issues) and high dose b12 injections - this also makes sense as i have very high cell free DNA and a blockage on SODase gene and low antioxidant status - i see the b12 as a kind of cover and slight repair system - helping but not curative. same with rest - as sson as i increase activity i go downhill rapidly.

    Justy.x
    merylg likes this.
  5. clive powney

    clive powney Senior Member

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    exactly the same for me - i had the tests about 6 years or more ago, did the regime for over 6 months, which included self injection of b12 and magnesium + many supplements and I continued to decline, so it is a bit of a damp squib for me.
    Sea likes this.
  6. Jenny

    Jenny Senior Member

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    Me too.

    Jenny
  7. Simon

    Simon

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    Me three, didn't help at all.
  8. richvank

    richvank Senior Member

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    Hi, all.

    For what it's worth, I think that Dr. Myhill and her coauthors have done a very nice job quantifying the mitochondrial dysfunction in ME/CFS.

    As I've written them before, what they haven't done is to explain the root cause of it. All of the detrimental factors they have identified, including oxidative stress, buildup of toxins, viral infection, and depletion of essential substances such as carnitine, coenzyme Q10, and magnesium can, in my opinion, be traced back to the vicious circle mechanism involving glutathione depletion, a functional B12 deficiency, partial methylation cycle block and loss of folates from the cells. I think that it will be necessary to break up this vicious circle by use of a methylation protocol in order to completely correct the mito dysfunction.

    I note that Dr. Howard does measure glutathione, but it is a red blood cell total glutathione test, rather than a plasma reduced glutathione test, and I believe that it is less reflective of tissue intracellular reduced glutathione levels, which is what counts. Nevertheless, he often finds low glutathione in PWMEs.

    I also note that Dr. Myhill has included methylation treatment on her website, but I don't think she uses it on all her patients.

    I really think that if the GD-MCB vicious circle is put together with their mito dysfuction work, we have a pretty solid explanation for what is going on in the mitochondria in ME/CFS, and why. I'm planning to write to them again about these things. I very much appreciate their work.

    Best regards,

    Rich
    dece, katim, sianrecovery and 3 others like this.
  9. Ian

    Ian Senior Member

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    Dental infections produce known toxins that cause mitochondrial failure, eg hydrogen sulphide.
    sianrecovery, Enid and merylg like this.
  10. richvank

    richvank Senior Member

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    Hi, Ian.

    Yes, and bacteria that produce hydrogen sulfide can be numerous in the gut in ME/CFS, too, including both the sulfate-reducing bacteria and various bacteria that are able to ferment the sulfur-containing amino acids in the diet. Marian Lemle has published on this, and Dr. Kenny de Meirleir's lab (ProteaPharma) has a urine test for hydrogen sulfide.

    Best regards,

    Rich
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  11. Ian

    Ian Senior Member

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    Indeed. I am sure gut bacteria can be more easily treated. How many sick people here have teeth with root canals ? Or cavitations caused by poor extraction.
    merylg likes this.
  12. Mula

    Mula Senior Member

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    I doubt this would be responsible for MECFS. Do you have a paper?
  13. Ian

    Ian Senior Member

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    merylg likes this.
  14. Mula

    Mula Senior Member

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  15. richvank

    richvank Senior Member

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    Hi, Mula.

    I have to say that over the past few years I have heard of a few cases in which cavitations or root canals gone bad have been major factors in cases of ME/CFS. One woman had a visible "bump" on the side of her jaw for years, and experienced considerable relief when she got it cleared out. Apparently the problem with these things is that bacteria can be in there that are inaccessible to the immune system cells, so they can't be knocked out, but they can keep putting toxins into the blood by diffusion.

    Best regards,

    Rich
    johnwfalk, jace, justy and 2 others like this.
  16. merylg

    merylg Senior Member

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    Booth, Myhill & McLaren-Howard reference this article that I also found interesting "The Double Life of ATP" Khakh & Burnstock

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2877495/

    "The molecule ATP, famous as an essential energy source inside cells, also carries critical messages between cells. That dual role is suggesting fresh ideas for fighting human diseases."
    justy likes this.
  17. taniaaust1

    taniaaust1 Senior Member

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    Thou the dysfunctions Dr Sarah Myhill finds doesnt currently seem to being successfully treated (Im saying that due to all the ones on this thread who say they have abnormality but trying to treat it hasnt helped), who knows.. if this becomes well known abnormality finding in us, maybe then other treatments will be found for this issue which help better.

    This is one field of research into ME which I think certainly needs to be continued and supported.
    merylg likes this.
  18. Hanna

    Hanna Senior Member

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    One more testimonial : I have been tested by Dr Myhill (through Acumen) in June 2010 and followed her protocol 9 months. I had some minor improvement right at the beginning, then plateaued. I struggled to take her multivitamin/aditionnal Mag transdermally without success (developped allergic reactions). Something was clearly missing for me or not really adapted to my needs.
    Nevertheless I found her testing interesting and useful. And it clearly reflected my disability level. And I had a bonus : after 12 years Hubby who is a conventionnal doc was finally convinced that it was not just in my head!
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i wonder if the mito dysfunction found in cfs me is more of a sign or symptom which is why many havent had success with this type of treatment. My experience is similar to others and had little success but i have had good success with mito treatments once i have treated some of the other main issues like cmv/ebv virus, chronic sinusitis with abx as correcting low dhea levels. I think this shows that we need to treat as many abnormalities as we can before we get noticeable improvements. Mito dysfunction maybe another biomarker for us.
  20. justy

    justy Senior Member

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    Hi Heaps - even the paper by Myhill et al says that the mito dysfucntion is a symptom and not a cause of M.E - i do wish they would put more effort into finding and treating the cause. I think their main suggestion is is eihter endogenous or exogenous chemicals/viruses etc blocking the Translocator protein. They do have a test for this, but unfortunately i didnt find it remotely useful - it was expensive and mine threw up only very minor chemicals, some lipids thing which no one could explain. I was told they did not know how to deal with this or even exactly what it meant and finally, of course, a result they have never seen before - steroids - and didnt know how to advise me on this - they guessed it could be a normal detoxing process of the inhaled steroids i take, but it really was a guess. FAR saunas suggested to treat all this, but i cant afford to buy one or travel to one.

    I have had some minor benefits from the protocol. Gone from bed bound to housebound and then started moving beyond that, but have recently lost most of the ground ive gained. I suspect that resting and pacing is what is really helping me as well as b12 injections (mops up the oxidative stress enough to feel slightly better) Right now im back to nearly where i started, so 3 years down the drain. Ive stopped most of the supplements now - most pointless - even the ones i was deficient in, after couple of years of taking no difference.

    I agree wholeheartedly though with Hanna - it is a great test for being able to finally SHOW the physical nature of the illness - i was misdaignosed with anxiety and depression and hypochondria for years (16)This test finally convinced family, friends and doctors that i wasnt crazy and was very very ill. The score they give for physical (dis)ability is very useful and correlates well - if you are new to understanding M.E it can really help to stop pushing. I thought my functioning was still pretty good, but my score was 25 -30% (bells scale) showing that in fact i needed to be in bed resting- not up and pushing.

    I think its a great test, BUT it isnt showing the full picture. Completely bypasses overgrowth of gut bacteria, viruses etc. Perhaps if i could afford testing for these and get treatment then, as Heaps says, mito treatments may help more.

    All the best, Justy.
    sianrecovery, heapsreal and merylg like this.

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