Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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INIM looking for volunteers for a study using exercise rehabilitation protocol

Discussion in 'General ME/CFS News' started by mango, Jul 12, 2017.

  1. mango

    mango Senior Member

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    Source
     
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  2. A.B.

    A.B. Senior Member

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    Is this an aerobic exercise program?
     
  3. RogerBlack

    RogerBlack Senior Member

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    http://www.nova.edu/academic-affair...ners1617/targeted-aerobic-rehabilitation.html

    They stop short of saying it's fear-avoidance.

    "Contrarily, if properly guided, exercise could have positive effects in sleep, physical functioning and self-perceived general health." I believe is all from studies of self-reported data, not objective.

    Hitting the anerobic threshold indicates this is not gentle exercise.

    I would want to see the full protocol before considering applying. And what they're going to measure.
    If there are not significant objective measurements (at least actiometers 24*7*24), for example, it is essentially worthless.
    'low-cost' seems to run the risk of it being a simple exercise program, with minimal monitoring.

    With careful symptom monitoring, and tracking of outcomes, as well as covering non-trial stressors from daily life, and their impacts, this could be an extremely valuable study.

    No research has been done into PEM trajectories. Daily diaries could even alone, along with actiometry and exercise response be enormously valuable.
     
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  4. trishrhymes

    trishrhymes Senior Member

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    'However, when ME/CFS engage in exercise, it can provoke worsening of symptoms, leading to a vicious cycle of physical inactivity, depression, weight gain, metabolic diseases, and further uncontrolled ME/CFS. Contrarily, if properly guided, exercise could have positive effects in sleep, physical functioning and self-perceived general health. '

    I wonder what evidence they have for this statement. Sounds horribly like they are saying it's all down to fear avoidance followed by de-conditioning followed by wild assumptions that this somehow leads to metabolic diseases and depression. And somehow some magic 'guidance' will enable us to exercise our way to health. Now where have I heard that before????
     
  5. A.B.

    A.B. Senior Member

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    There has been a study that followed patients undergoing an exercise treatment regimen. It found that patients were able to meet the targets for a while but then started to deteriorate.
     
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  6. RogerBlack

    RogerBlack Senior Member

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    This is from the various GET trials from memory.

    One of the studies had a moderate effect on sleep as the only secondary outcome really standing out.
    If you do manage to comply with physical exercise, in some manners you're going to improve physically.
    And - well - self-reported general health...
     
  7. trishrhymes

    trishrhymes Senior Member

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    Any info on what study this was?
     
  8. A.B.

    A.B. Senior Member

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    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1280928/

    Any serious proposal of exercise as treatment must include a discussion of PEM and provide a good justification for exercise. Saying that exercise is generally good and healthy is not a good justification, because the general population doesn't have PEM.
     
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  9. lnester7

    lnester7 Seven

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    I think we really need an exercise good study to put the topic to rest. The one thing they have to do, is hook you up as you breath to measure oxygen / DO exchange. That will be a good design. And also follow up patients up to a year later.
     
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  10. Snowdrop

    Snowdrop Rebel without a biscuit

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    Warning: rant follows

    Nancy Klimas has (it seems to me) always been an advocate of exercise -- while maintaining that it needs to be done carefully/properly/slowly whatever.
    I am always a bit miffed by people who are hale and healthy trotting out the exercise is always good trope. Yes exercise is good. Yes we live in a culture where we don't have to chase down a mastadon for dinner (although after the chase I bet they spent a lot of down time too) and so are seen as needing deliberate exercise. This idea of exercise is so ubiquitous so unquestioned as a kind of health doctrine that even if you daily feel like activity is climbing Everest without an oxygen tank we are to still focus all our energy efforts to making the small incremental improvement because it will be good for us in the end.

    I'd much rather any money on research went to bloody well fixing what's broke and allowing me to get on with my life. I find it patronising that I'm supposed to be OK with continuing to be sick while being grateful for the effort of researchers like Klimas to find ways to get us moving more. Fuck that. I want real treatment.

    And while exercise does have an impact of better sleep for healthy people I'm not convinced that it is true for PwME. Even if done under 'medical care' standards.
    I find the focus on doing this to PwME just a little bullying. Healthy people who really have no direct knowledge of how it feels to function with this illness. They always know better.

    If you have ME it is a long term chronic condition. Messing around with peoples lives because exercise is necessary to all is to deny ME. It is extremely unclear that it is even of benefit to those with mild ME. When I was mildly affected I did what exercise I could and what I enjoyed. I did Karate, Yoga, Tai Chi. Like most other people I routinely over estimated my capacity. Whatever little value their exercise treatment might possibly have it's hardly worth all the energy they put into it compared to the real value that will come from biomedical research into cause leading to cure.
     
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  11. lnester7

    lnester7 Seven

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    Ahh I didn't realized it was at NOVA I couldn't do it because I am on beta blocker ( need to be off at least 2 weeks)
    I really encourage to do it, they do monitor your exchange, so they (when I had the test) stop you way before you cause damage or you even feel it.
     
  12. lnester7

    lnester7 Seven

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    They have a great rehab doctor, so the way they teach you is based on the test which is all very science based on your oxygen levels. I have done it w them, and is very different at the way for example I was thought for POTs.
    This approach is specific to ME/CFS. and is like regular sport science (we will not exceed your individual AT).

    I think this is how I have gotten out of bed a few times tx to this rehab like approach. BUT HAS TO BE DONE RIGHT, you would be surprised at the improvements.
    It is not a cure, just will avoid deterioration and keep you from deconditioning.
     
  13. Mij

    Mij Senior Member

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    I am able to get out and power walk only when I'm feeling ok, I am well aware of my 'energy envelop", but I'm certainly not going to follow any advice from anyone regarding exercise. I can decide what I can and can not do on my own.
     
  14. Snow Leopard

    Snow Leopard Hibernating

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    It's a catch-22
    "reversing deconditioning" requires high intensity activity - a walk around the block makes no difference. The problem is that high intensity activity triggers weeks of ill health.
     
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  15. Valentijn

    Valentijn Senior Member

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    FFS, when did INIM at NOVA turn into a quack-fest? :grumpy:

    Was it always part of the College of Osteopathic Medicine? Putting ME under that umbrella would certainly give some over-enthusiastic morons the wrong idea.
     
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  16. jimells

    jimells Senior Member

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    This is straight-up fishing for NIH money, just like so many other US researchers. NIH *loves* to fund rubbish "How to Better Manage Your Illness" studies. If Ron Davis applied to do this kind of rubbish research, he would be funded in a heartbeat.

    For decades prominent US researchers have been chasing their tales and coming up with nothing clinically useful. This study will be one more to add to the list.
     
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  17. Alvin2

    Alvin2 If humans were rational...

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    I'll sign up for this under one condition, if i get worse they pay for lifetime care that would have otherwise been avoided (conditions to be negotiated before signing). If i get better i will pay towards the next study to confirm the results.

    So with reality threatening their lies are they still willing to play this dangerous game with our lives backstopped by their bottomless pocketbooks?
     
  18. Snowdrop

    Snowdrop Rebel without a biscuit

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    In this theoretical situation may I suggest you have 'get better' nailed down by legal terms. :D
     
  19. Alvin2

    Alvin2 If humans were rational...

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    I will, i will not throw away my life without iron clad guaranteed compensation equal to my losses.
     
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  20. Nielk

    Nielk

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    http://www.nova.edu/academic-affair...ners1617/targeted-aerobic-rehabilitation.html

    Abstract

    [​IMG]
    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a challenging chronic disease, characterized by persistent disabling fatigue, accompanied by post-exertional malaise, impaired memory and concentration, nonrestorative sleep, orthostatic intolerance, and musculoskeletal pain; negatively impacting the patient's ability to function, to study or work, with negative economic consequences to patients, their families and the society. The fatigue is not explained by other medical or psychiatric conditions, and the diagnosis is made only after other potential etiologies have been ruled out. Unfortunately, while there are a variety of diagnostic tests that can assist with the diagnosis, there is no definitive treatment for it.

    The Institute of Medicine estimates that it affects up to 2.5 million Americans, and estimates that between 84 to 91% live with the condition unaware of the diagnosis. In 2015 the National Academy of Medicine (previously Institute of Medicine) highlighted the urgent need for research to discover causes and develop diagnostic markers and treatments.

    Exercise is a major clinical intervention for healthy aging as well as to prevent or treat a myriad of diseases. However, when ME/CFS engage in exercise, it can provoke worsening of symptoms, leading to a vicious cycle of physical inactivity, depression, weight gain, metabolic diseases, and further uncontrolled ME/CFS. Contrarily, if properly guided, exercise could have positive effects in sleep, physical functioning and self-perceived general health. Nevertheless, exercise interventions for ME/CFS are not standardized, and further research is much needed to determine the type, duration and intensity of the most beneficial individualized exercise intervention.

    Our team has previously utilized a maximal exercise challenge model to measure the post-stress effect on immune responses in patients with ME/CFS. We identified a compromised anti-inflammatory response to exercise, as well as a gender-specific response to exercise associated with sex hormones.

    We propose to conduct a pilot study using a novel metabolic testing model, Indirect Calorimetry with a submaximal clinical exercise tolerance test, to quantify objectively how long a pilot group of ME/CFS female patients could sustain a low-level to moderate continuous intensity activity using their aerobic capacity (fat utilization) and how quickly they move from an aerobic to an anaerobic condition. We will use this test model to create a standardized, low-cost, 16-week rehabilitation intervention that will include aerobic and anaerobic exercise, to evaluate its tolerance and impact in the aerobic and functional capacity of these patients.
     

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