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What Will Happen To M.E.?

Discussion in 'General ME/CFS Discussion' started by Karenironside, Apr 3, 2014.

  1. alex3619

    alex3619 Senior Member

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    We have imbalances in lactic acid. Lactic acid drives heavier breathing. As the pH increases (becomes alkaline) it drives slower breathing. I am wondering if our breathing rate is related to pH in the brain?
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  2. Leopardtail

    Leopardtail Senior Member

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    Equally possible isn't it? If the Mitos are not working right either inherently or due to poor oxygen supply lactic acid would be the normal bi-product (anaerobic respiration) my the same token if the lactic acid itself is the problem would it mess up breathing?

    Am I right wondering if lactic acid generation (at high levels) is what promotes true panting Alexxx?

    I am just thinking some people find they benefit from an alkaline diet, perhaps this is why?
  3. alex3619

    alex3619 Senior Member

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    Yes, I think, or at least its the general thought, that pH drives breathing rate. The idea, which I have not seen a study on, is that lactic acid goes up, heartrate and breathing go up, more oxygen transfer occurs, and the mitochondria reaches maximum capacity as oxygen is improved. Of course this all changes if the mitochondria or microcirculation or regulatory pathways are stuffed .... more oxygen will not fix the mitochondria past a certain point.
  4. justy likes this.
  5. A.B.

    A.B. Senior Member

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    One reason why doctors lose interest in difficult cases is that there's a little voice in their head whispering "it's just psychosomatic". This misanthropic belief system is actively being promoted in certain illnesses such as ME. Once a patient is labelled as psychosomatizer there's little chance of ever having the testing done that's needed to find out what is actually wrong, and without that, there's little chance of ever convincing a doctor that the diagnosis of psychosomatic disorder is wrong. It's a vicious circle where some of the most vulnerable and in need of help are being abandoned. If it turns out that Dysfunctional Breathing Syndrome is indeed the problem in your case, then you have been very lucky to find out in such a relatively short amount of time.
    Last edited: Aug 14, 2014
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  6. Unfortunately, I'm forced to agree that you may very well be right. It is very wrong but I think you are right. It angers me so much that there are people out there that may well be curable if only they were believed or if they are if only doctors would be a little more imaginative when looking for other possible diagnoses or treatments.
    justy likes this.
  7. Leopardtail

    Leopardtail Senior Member

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    Again, love it. It put a different slant on an article I would love to write for a financial newspaper. The fact that remains clear to me is that even if one DOES have true ME and (in my case) relatively severe ME - often there are clear underlying problems causing the issue. I for example had been convinced for some time that I had either a Mitochondrial issue, or a thyroid issue. My specialist did the most basic test for Thyroid and sniffed at the idea of anything mitochondrial. I recently had tests done that showed crystal clear mito dysfunction and very likely thyroid dysfunction. I also had very hard clear kidney stones (like diamond shards) and constant polyuria - Cystine is a known cause of both. Guess what? Yes I also have high Cystine!

    Even for those of us with ME they could do much more. In my case I needed basic benefits, DLA for both care and mobility. I formerly earned circa £75K per year prorata (lower due to undiagnosed ME) and (at that time) paid higher rate taxation. The loss to both me and the state has been massive. We need to make an economic case for better medicine and research as well as a moral one. Total loss to that state in revenue loss and benefits has been over £40K / year for a single person. Total cost of comprehensive testing and treatment circa £3.5K. The net loss of failure to test and treat would amount to circa £316K

    If 5% of the people in your figures have my earning capacity that would amount to more than £40million / year. The remaining people with true and severe ME, normal earning capacity, assuming one half were treatable to the point of independence would account for 22K people. Since we are dealing only with severe ME the likely benefit bill would exceed £10K/annum. That would amount to a further loss of £220million /annum if they never paid tax on return to work.

    Adding up your estimates for people who do not have ME at all (I have discluded them from my figures) and mine for people who do have ME the total net loss 360million /annum. That figure ignores some of the smaller amounts in your analysis.

    Looked at in terms of pure economics the lack of investment is mind blowingly stupid.

    I wonder if Wessley et al would be the flavour of the month if the basic ecomomics were grasped by those with clout.
    NK17, Cheshire, justy and 2 others like this.
  8. Leopardtail

    Leopardtail Senior Member

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    Doing a few more tests would be darn useful too. We could do with a register of everybody who's returned to work having had a correct diagnosis so we could take a mass action for loss of income due to medical negligence, train up one rottweiler of a lawyer and let him loose.. If local councils started to have to settle very large claims, they would rapidly improve.
    justy likes this.
  9. Putting all of your estimates together with mine and it becomes totally appalling!! I don't think our statistics are so very very out.

    Let's imagine that we are out by 50% (far too much) that is still £180 m per year.
    justy likes this.
  10. A.B.

    A.B. Senior Member

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    Coincidentally, I saw a team of endocrinologists yesterday and they were confident that I'm most likely suffering from an endocrine illness. I had suspected this for some time, but never got proper testing because an ACTH stimulation test is just so difficult to get. This time, with their help, I'll probably get it done.
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  11. Leopardtail

    Leopardtail Senior Member

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    In the context of ME it can be misleading research has been done comparing PWME against controls using two different tests. The short synapthen tests (the one most commonly used) did not show significant difference but the extended synapthen test (which works the adrenals for longer) showed marked impairment as time passed.
    justy likes this.
  12. A.B.

    A.B. Senior Member

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    I'll keep this in mind. Do you remember where you read this? I have empty sella syndrome by the way, so they might do some other stimulation test because an ACTH test will frequently give false negatives when the problem is the pituitary.
    Last edited: Aug 15, 2014
  13. justy

    justy Senior Member

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    @Karenironside I tested my breathing and it is between 8 and 10 breaths a minute. Over breathing is often cited as a cause for M.E, and it is not something I have given much credence to. BUT I do sincerely hope this will turn things around for you and give you your health back.

    If so, please don't give up on us at PR too quickly - people need to know and understand the various misdiagnoses that can happen.
  14. ukxmrv

    ukxmrv Senior Member

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    """This characterisation of ME personality and lifestyle is also apparent in the theory that ME is an effect of hyperventilation, or overbreathing. In this version of the 'yuppie flu' construction, sympathy for the sufferer morphs into contempt. The theory, based on the claim that a change in breathing lowers the level of carbon dioxide in the blood, inducing malfunction in muscles and other organs, was publicised in an article on the front page of the Sunday Times (Hodgkinson, 1988); the title, predictably maddening to sufferers, was ' ‘Yuppie flu’ is all in the mind, say doctors'. The doctors concerned were cardiologists Peter Nixon and Stuart Rosen, who expounded their views in the same issue of the Sunday Times, and whose proposed method of treatment was a period of sleep induced by heavy sedation, followed by breathing retraining.


    The notion that the symptoms of ME result from hyperventilation produced by anxiety originates in the writings of McEvedy and Beard (1970b: 13). The essentials of this new version of an old idea emerge from the press report just mentioned. 'All the (ME patients) we have seen here,' explains Rosen, 'have four-star abilities with five-star ambitions. They have above-average intelligence, high levels of drive, lots of enthusiasm; but they are not quite the superman or superwoman they need to be to achieve their ambition.' A severe viral infection, he believes, can trigger the health crisis, but it is not the root cause. With the disregard for logic and coherence that characterises so many pronouncements about ME, Rosen adds that his patients have ranged from an old lady whose illness began when she was pushed out of a bus queue, to a woman who survived torture in a South American prison, but became ill when she learned that her daughter had married a fascist. How either of these cases fits the specification of five-star ambitions hampered by four-star abilities is not clear.


    Rosen's colleague, Peter Nixon, adds more soberly that 'overbreathing is a symptom of fear or panic, that can be experienced when people who demand a lot of themselves are falling short in their achievements'. A subsequent paper in the medical press, of which Rosen and Nixon are amongst the co-authors, draws analogies between alleged stages of ME and those of battle-weariness, and speculates as to whether hyperventilation due to anxiety and effort may be the natural penalty for violating the boundaries of physiological tolerance (Rosen et al. 1990: 763-764).


    In a later television interview, Hodgkinson (Frontline, Channel 4, 25 July,1993) defended his use of the term 'yuppie flu' in his Sunday Times report. He explained that yuppies in the 1980s went all out for material success, becoming ill when their goals were frustrated; they had 'one foot on the accelerator and one foot on the brake', and suffered a crisis leading to deep exhaustion and despair. As suggested above, there is an implication, albeit unstated, that ME sufferers are unpleasant, pushy people, who have got their just deserts. The preponderance of female sufferers appears to be forgotten here: it is not plausible that most of the high-powered people to whom Hodgkinson refers were women. ""

    http://www.medicalsociologyonline.org/oldsite/archives/issue41/pdwolfe.html
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  15. Of course I won't! I will continue to blog about my experiences positive or negative. I firmly believe in patients helping themselves and one of the ways to do that is if we work together to share our experiences so we can learn from each other.
    justy likes this.
  16. Today's Blog: Breathing Life into an Old Dog

    How breathing correctly has dramatically improved my health and achievements

    www.whatwillhappentome.net

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