Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Aerobic work capacity in patients with chronic fatigue syndrome.

Discussion in 'Other Health News and Research' started by deleder2k, Jan 24, 2017.

  1. deleder2k

    deleder2k Senior Member

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    BMJ: Aerobic work capacity in patients with chronic fatigue syndrome. 1990.

    OBJECTIVE--To determine the aerobic work capacity of patients with the chronic fatigue syndrome and compare it with that of two control groups, and to assess the patients' perception of their level of activity before and during illness.




    They wrote in the study: "In summary, patients with the chronic fatigue syndrome who impaired capacity for exercise despite an increased perception of their exertion. We found no evidence for a deficient cardiovasculat response or peripheral muscle function other than that which would be expected as a result of deconditioning. Other mechanisms, however, such as atrophy of muscle fibre or depletion of muscle enzymes may result in similar findings and merit further investigation".



    The Berlin wall had just been demolished. The year was 1990. The Soviet Union was still a country. It was 27 years ago. It was the year I was born. Why on earth didn't one continue this track? What the f*** happened? It looked like they were on the right track back then. Many interesting studies from the late 80's and early 90's. If our symptoms are caused by dysregulation of the enzyme PDH it is all tragicomic. Patients say that they have no energy. Patients say that they feel lactic acid just by standing up, or just by walking a few metres. Can a enzyme crucial for energy be why we can't use utilise energy?
    Why investigate that in-depth when one can destroy the path where science was headed with some stupid papers on CBT? Why listen to patients when you can choose not to? Why would having a proper functioning of the energy metabolism be worth investigation further when you can choose not too?

    I don't know if how close we are, but one thing is certain: ME will be one the darkest stories in the history of modern medicine.

    Lets hope that 2017 will be the year things started really to change.
     
    Last edited: Jan 24, 2017
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  2. Snow Leopard

    Snow Leopard Hibernating

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    I have done the 2 day CPET, on the first day and my "aerobic work capacity" it was extremely close to the population mean of those of my age, gender and bodyweight. (eg not reduced compared to normal controls).
    (likewise, the VO2 max calculation VO2 max = 15.3 x (MHR/RHR) was almost spot on.)

    Yet on the second day I struggled much more to perform a figure of 7% less than the first day. My legs just couldn't put out the torque.

    Reduced cardiovascular work capacity can easily be blamed on deconditioning - but normal one day and below normal the next needs far deeper explanation.
     
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  3. Hip

    Hip Senior Member

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    What happened? It was the corrupt disability insurance industry who purposely and unscrupulously took ME research off track in the 1990s, when they succeeded in deceiving the world by falsely making ME look like a non-physical "all in the mind" disease, even though ME is a physical organic disease.

    Why did they do this? As a result of the fivefold to eightfold increase in the incidence of ME that occurred from 1980 to 1989, the disability insurance industry were faced with an enormous payout of disability claims for this huge flood of new ME cases that appeared. According to UNUM insurance (one of the most rogue of companies), claims for disability caused by ME had increased by 500% from 1989 to 1993. The insurance industry's strategy to avoid these payouts was to falsely and deceptively make ME look like it was an "all in the mind" condition, because insurance companies do not need to provide long term disability payouts for psychological conditions.

    The disability insurance industry did this by most likely influencing the creation of the new disease category of "chronic fatigue syndrome", which by its dodgy definition could be conveniently considered an "all in the mind" psychologically-caused condition. This contrasts to the definition of ME, which is a physical biologically-caused disease.

    The insurance industry also enlisted the help of psychologists and psychiatrists like Sir Simon Wessely and his Wessely School international pals, who for a fee, and in order to help promote their careers, were willing to be complicit in this hugely damaging deception.
     
    Last edited: Jan 24, 2017
  4. alex3619

    alex3619 Senior Member

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  5. alex3619

    alex3619 Senior Member

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    Would you mind telling me where? I was unaware this testing was being done in Australia.
     
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  6. Snow Leopard

    Snow Leopard Hibernating

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  7. Sidereal

    Sidereal Senior Member

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    What happened is that several other studies failed to show elevated lactate levels during maximal exertion so instead of thinking outside the box it was concluded that muscle metabolism was normal, move on folks, nothing to see here. It took 20+ years for people who actually listened to patients' descriptions of PEM to figure out to repeat the CPET two days in a row. I don't think most of us have abnormalities on day one which is the standard testing protocol in medicine so instead of studying us with the necessary level of intellectual curiosity / subtlety they simply dismissed us as insane. It is preposterous that it's taken decades to document the obvious problem with PDH. Surreal really.

    Btw the other major issue in modern ME/CFS CPET research is chronotropic incompetence. There are studies going back to 1980s or 1990s showing inability to reach max heart rate yet no one gave a shit.
     
    Last edited: Jan 24, 2017
  8. Sing

    Sing Senior Member

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    It is enfuriating, I agree. Move on folks; nothing to see here....

    About the second issue you raise, years back I got on an exercise bike that showed your heart rate, and to my deep surprise as I was peddling as long and hard as I could, my heart rate was dropping! That was when I got off--not only because it felt really hard, but because that was too creepy. When normal processes like heart rate turn upside down, it is time to leave the building while you still can!
     
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  9. *GG*

    *GG* Senior Member

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    I did this as well, here are my results, from 2010.

    GG
     
  10. alex3619

    alex3619 Senior Member

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    We might have figured it out in 1956, after investigation into the Royal Free Hospital outbreak. However it is not clear that the 1949 technology was widely available till the 80s.
     
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  11. Kati

    Kati Patient in training

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    It reminds me of a Canadian study reporting altered blood flow in the brain from 2007 or something like that. You'd think there would be a follow up on this, you know. But no, absolutely no funding for us.

    https://www.ncbi.nlm.nih.gov/pubmed/18671793
     
    Last edited: Jan 24, 2017
  12. ash0787

    ash0787 Senior Member

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  13. Hip

    Hip Senior Member

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    That was the question I was asking people to suggest answers to on that thread.

    My best guess is that the large increase in pesticide usage in the decades prior to 1980 may be the culprit. In the UK, there was research into the link between pesticides and ME/CFS, especially by ME/CFS expert Professor Peter Behan, but as usual, industry acted to try to ridicule the science showing that pesticides greatly increase the risk of ME/CFS. In the case of significant exposure to organophosphate pesticides in sheep dipping farmers, studies found a fourfold increased risk in developing ME/CFS.

    See: Guardian: UK Govt. knew of danger of organophosphates, ignored it (Mar quoted)

    A recent study found that women who use pesticides domestically have double the risk of autoimmune diseases lupus and rheumatoid arthritis.
     
    Last edited: Jan 25, 2017
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  14. ash0787

    ash0787 Senior Member

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    how widespread is the use of these pesticides in the modern world ? any large population centers that don't use it ? any studies specifically done on this ? maybe something for the wannabe anthropologists ( psychobabblers ) that they could actually do which would be useful...

    I always heard incidence of me/cfs was roughly consistent around the world with no significant racial bias etc. Also would we expect to see a decrease in people that consistently lived in urban areas, or could these pesticides be making their way into food too ?
     
    Last edited: Jan 25, 2017
  15. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Yes they are in your food and many other places see Aerotoxic Syndrome
    Evidence from Gulf War Syndrome research shows low dosages are massively increased in effect by other toxins, the kind of synergies I keep warning about
    And the toxicity of these chemicals make cyanide look like gnat's piss by comparison, weak gnat's piss at that :p
    I did long post on toxicity on someone's post regarding botulism please look at it if wish :)

    Beyond organophosphates theres several other groups of compounds in use, sorry bad day memory is bad, one is based on synthetic nicotines, organocanaboids? Blech something like that
    Increasing evidence of horrendous toxicity to wild life and mammals ie Humans, is growing
    Kiss the bees and human sexual hormone/glands good by hello sterility and gender damaged babies! :(

    I am so.so sick.of the scum who cover up Big Businesses evils
     
  16. Snow Leopard

    Snow Leopard Hibernating

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    Thanks.

    I wouldn't really call that a 2 day CPET as the 2 day test requires performing to VO2Max on both days, rather than steady state riding at 25w for 15 minutes - pedalling peaking at 200w+ is much harder than 25w as you well know.
     
  17. *GG*

    *GG* Senior Member

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    Huh? Even though it says Cardiopulmonary Exercise test (CPET and on the 1st page is says I was tested on consecutive days 8/10-11, 2010?

    GG

    PS Dr Betsy Keller is on our side, an is another center to get this testing done!
     
  18. medfeb

    medfeb Senior Member

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    These studies piss me off for the same reason. Patients have lost decades of their lives and in many cases, never should have gotten ill at all if not for the agenda of a group of shrinks supported by vested insurance interests and enabled by a medical community turning a blind eye.

    Here's a study from 1986 that has always struck me the same way. A case of 1 of a Ramsay patient but still 1986.
    "Excessive Intracellular Acidosis Of Skeletal Muscle On Exercise In A Patient With A Post-Viral Exhaustion/Fatigue Syndrome"
    "During exercise, muscles of the forearm demonstrated abnormally early intracellular acidosis for the exercise performed. This was out of proportion to the associated changes in high-energy phosphates. This may represent excessive lactic acid formation resulting from a disorder of metabolic regulation.
    The metabolic abnormality in this patient could not have been demonstrated by traditional diagnostic techniques." ​
    And from the body of the paper...
    "We speculate, therefore, that the defect may invole [sic] the regulation of the relative contributions of glycolytic and oxidative processes to muscle energy provision." ​
     
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  19. Snow Leopard

    Snow Leopard Hibernating

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    The 2 day CPET measures maximum exertion (VO2Max) on both consecutive days.

    I could only see one VO2Max figure reported (there should be a number for both days) and the letter states:

    I assumed Test 1 was on the first day and Test 2 was on the second day?


    There seems to be similar discussion on this thread:
    http://forums.phoenixrising.me/inde...tests-results-from-2010-ithaca-college.47906/
     
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