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Dr Myhill publishes second paper

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

  1. Holmsey

    Holmsey Senior Member

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    Really tired today and so I haven't copied the comments to which I refer, if you recognize anything feel free to reply, thanks.

    There are a number of comments which quote critiques of the 'profile test'. If I read the latest paper correctly then it shows the results of a control group verses a patient group with quite clear differences in results, if I recall there's only one patient with an overlap into the control group results set. Criticism of the science aside, surely this shows there's something significantly different happening?

    If you don't accept this then are you saying that the results are being misrepresented, or worse, are fictitious?

    Surely we should be on board for anything which shows us to be different in any respect to a control group, whether or not the best method was used is to me irrelevant as I can't see any way to develop a flawed test which still manages to successfully differentiate the two. Such a test, something the NHS does not possess, and for many of its practitioners cannot exist (as we aren't really ill), is surely worth our support until hard science shows otherwise.

    Surely for now it's more important to establish what the tests do show, than simply to support any group of nay sayers on the basis that more work hasn't been done, or because the NHS doesn't use the test.

    Re. the NHS: I did this profile test about two years back, incredibly poor results were forwarded to my GP, having allowed him to review them I asked to be referred to whichever specialist in the NHS would deal with mito problems, he inquired through the general medical specialists offices and was told that for my NHS area there was no one who could help. Hardly a surprise to me then that the NHS don't use these tests, in my area they don't even have someone who knows which tests to order. NHS, hell I haven't even been offered CBT or GET so why would I judge anyone else based on what that shower of back slapping tax sapping witch doctors do!

    Like others the interventions offered on the back of the tests saw initial improvement, a plateau and then a decline but despite that, and despite the financial outlay I'm still not about to criticize a self funded study by a group who clearly want to advance the science of my illness, not until someone has science akin to that offered post XMRV which shows that there's nothing in it. And frankly, even then, I applaud the effort.
     
    taniaaust1, merylg, peggy-sue and 2 others like this.
  2. justy

    justy Senior Member

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    Holmsey, i couldn't agree more with ALL that you say. My experience is much the same.

    This test clearly shows a difference between people with CFS and healthy controls. It shows severe illness when no one else will believe we are ill, despite the lifestyle we must lead.

    My NHS doctor claimed to not understand the results sent to him - declared it was all experimental then refused to prescribe the supplements etc that he could have (eg COQ10 and B12)

    This is a PUBLISHED PEER REVIEWED paper. Something that everyone claims to want, but then when it happens they get heavily criticised for not going along with a system that has never helped us - in fact has caused more harm with patients being sectioned and deaths being caused.

    Interesting that others note a similar course using the recommended treatment from the test. For me i also improved, Plateaued and now am in decline - nearly back to sqaure one despite still taking the supps etc. I would really love to know what is going on with that!

    All the best, Justy.
     
    sianrecovery likes this.
  3. Holmsey

    Holmsey Senior Member

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    Hi Justy, Yes, I got a similar comment from my doctor when he received the results but he has been very supportive and did as I indicate try to have someone higher up the chain take a look. I'll never know if the feedback he was given was true or just a case of the usual ignorance we're treated with.

    It's interesting that Liverpool Uni have been given some of this years astonishing 1.6 million grant in order to investigate mito issues, my take on that is that 'they' have known for some years that there's a real problem in this area. Like others I don't think we have a mito illness but rather that the illness causes a mito problem, and in that may be the answer as to why the interventions don't make a lasting difference, they're not tackling the root cause.

    But again as we both seem to grasp the importance of this paper is the differentiation between healthy controls and ME sufferers and accepting that I share the optimism expressed earlier in this thread that if others are prepared to continue the research, even if that's only to confirm or refute the paper in question then we may solve a big piece of the jigsaw and better refine those interventions.

    In the end if the science is flawed I'd much prefer that's proved, I can't think of a worse science than no science at all and right now we have neither support or contradiction just a few petty picks.

    Again I'd finish by saying that I take my hat off to this group, it can't have been a cheap undertaking and I've seen nothing about grants, perhaps Dr. Shepherd might serve us better by getting on board and directing some of what is in the end 'the charity of others' toward a group trying to make a difference.

    Regards,
     
    sianrecovery and justy like this.
  4. alex3619

    alex3619 Senior Member

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    I cannot definitively answer this question but I do have thoughts on it. This phenomena is very well known in ME and CFS circles for lots of treatments. My best guess is that its due to treating symptoms rather than causes. In this case the problem with the mitochondria is secondary to something else (pick your theory). Since there are many biochemical feedback loops involved, when you modify one thing it will impact something else. Somewhere or other this comes back in a feedback loop that undoes the good work the supps were doing.

    An alternative hypothesis to this is the deficiency hypothesis. You fixed a problem, but it then put more demands on other parts of the body chemistry, leading to something running out - and the improvement stops or goes into decline.

    Hope I haven't confused the issue further.

    Bye, Alex
     
    taniaaust1, sianrecovery and justy like this.
  5. biophile

    biophile Places I'd rather be.

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    If this test can reliably distinguish patients from controls, then it would be an important finding nonetheless. A biomarker would still be useful regardless whether it is actually detecting what the authors think it is (eg systemic mitochondrial dysfunction). Even the Vermeulen et al criticism (http://www.translational-medicine.com/content/8/1/93) may support previous findings of increased neutrophil apoptosis in CFS (http://www.ncbi.nlm.nih.gov/pubmed/15280416)?

    However, it is also important that biological research stands up to scrutiny as we expect from psychological research. A remaining concern is that we (or at least I from a glance) do not know much about the "normal healthy controls", were they adequately matched to patients for age, gender, and physical fitness? Rather important for a mitochondrial test. Again, although not mentioned in the recent paper (http://www.ijcem.com/files/IJCEM1204005.pdf), Myhill et al previously claimed to be doing work on PBMCs to help corroborate their neutrophil based evidence (http://www.translational-medicine.com/content/8/1/93/comments). I would like to see those results before deciding whether their test detects mitochondrial dysfunction, which is crucial for treatment implications.
     
  6. Valentijn

    Valentijn Activity Level: 3

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    Even if it is experimental, unproven, etc - this testing should at least give an indication of more established tests for a mainstream doctor to order. Instead they often file it under "proof that patient is a desperate hypochondriac who must be ignored".
     
    sianrecovery likes this.
  7. barbc56

    barbc56 Senior Member

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    But there are tests available such as a muscle biopsy.
     
  8. justy

    justy Senior Member

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    Another issue that i see with the paper and test - apart from those pointed out by Biophile to do with the status of the 'healthy controls' - is that it's extremely likely these abnormalities may be seen in other diseases, especially those which feature PEM. A brief search on the net will bring up many studies and articles discussing high cell free DNA, increased oxidative stress etc in many other diseases, most notable Lupus, MS, and Sarcoidosis.

    I would like to see a study that compares the results between these autoimmune diseases, healthy matched controls and those with ICC M.E. As discussed on other threads the mito profile test essentiall shows us that are bodies aren't working correctly and that we are very ill - which we already know! They are not necessarily a biomarker for M.E and neither do they show the cause of the problem.

    Despite my reservations and desire to see further research in this area i still believe the test to be useful for patients.

    All the best, Justy.
     
    Shell and sianrecovery like this.
  9. Dolphin

    Dolphin Senior Member

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    I haven't read this paper yet but I was reading some older stuff I printed out and never read and found that most of:
    Lyndonville News Vol 8, Number 1, May 2011: http://www.davidsbell.com/LynNewsV8N1.html
    is Norman Booth defending their first paper.

    The references give the sort of ground covered:
     
  10. johnwfalk

    johnwfalk

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    I too have met a man sick for twenty years with cfs who is now completely symptom free. About five years ago he was on plane when a pain show though his jaw and his face swelled. He discovered he had a festering infection in cavity left behind after root canal during teens.
     
  11. richvank

    richvank Senior Member

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    Hi, John.

    Thanks for posting this. These infections in the gums can really be "sleepers," and can cause a lot of problems without being detected for years. I have read other stories like this over the past few years on the ME/CFS internet boards.

    Best regards,

    Rich
     
  12. johnwfalk

    johnwfalk

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    Rich -
    Thanks for posting, too. In fact it prodded me enough to make an appt. with biological dentist. jf
     
  13. tatt

    tatt

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    In the UK ME has traditionally been seen as a psychiatric problem. Dr Myhill is one of the people who has opposed that view and gone up against the medical establishment trying to show that there are markers of physical illness.Therefore she will be attacked. I'm not up to following the science but she's getting people to think about important questions.

    Personally I suspect there are different causes of what is called ME/CFS and that what causes it may not be what perpetuates the problem. It seems to be an illness where many minor problems combine. I'm working on as many of these problems as I can recognise and seeing some improvement.
     
    Enid likes this.
  14. Mattman1

    Mattman1

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    John,

    Did anything come of your dental appointment? I got root work done three months before my symptoms started to hit. I think I got a possible dental infection as well some time ago because of tooth pain with a fever, but nothing was found on X-ray. Would hate to have the canal removed if it has nothing to do with the symptoms.
     

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