New era for ME/CFS research as top cytokine study attracts media headlines
The immune systems of patients who have recently developed ME/CFS look markedly different from those who have been ill for much longer, according to a major new study from Drs. Ian Lipkin and Mady Hornig at Columbia University. This shift in immune function hadn’t been seen before.
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Article: The Test: Part I of the Heart Rate Based Exercise Video Series with Dr. Klimas on ME-CFS Co

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jul 24, 2011.

  1. Marco

    Marco Old blackguard

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    Near Cognac, France
    I'm looking forward to the rest of the series.

    In the meantime I Googled 'reduced aerobic capacity' and within the first two pages found the following conditions associated with reduced aerobic capacity :

    The elderly
    Older HIV patients
    Systemic sclerosis
    Thyroid deficiency
    obesity
    heart disease
    liver transplant

    and this with respect to hepatitis B :

    In many cases the reduced capacity is due to deconditioning.

    So yes reduced aerobic capacity can be objectively measured but it is not by any means unique to ME/CFS and is often the result of deconditioning arising from chronic disease.

    Could you elaborate on how it has been proven IN ME/CFS to not result from deconditioning (not that I believe it does)?

    I would imagine that you would need either a large scale prospective study or (perhaps using the new international criteria that don't require a 6 month delay before diagnosis) identify new onset cases that were previously aerobically capable and now show measurable reduced capacity.

    Even then I would expect continued skepticism from the general medical community who are accustomed to dealing with reduced aerobic capacity in the chronically ill as a matter of course.

    Alternatively, and much more convincing, not to mention useful to us, would be to identify the mechanism that reduces our aerobic capacity and demonstrates beyond any argument that it results from pathology.

    The potential for rehabilitation can then be realistically gauged.
     
  2. Cort

    Cort Phoenix Rising Founder

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    According to Staci Stevens and Dr. Snell at the Pacific Fatigue Lab the metabolic abnormalities; ie the reduced VO2 max seen in ME/CFS patients during the repeat exercise tests are not seen in any other disorders. Here's something from Cracking the Foundations - an article on their work I did earlier

    http://aboutmecfs.org.violet.arvixe.com/News/PRJan09Pacific.aspx

    There's a big difference as well. I imagine, between the kind of reduced aerobic capacity found in many of these disorders and in CFS. Note that with hepatitis B that quote stated the aerobic capacity could be regained. Nobody has suggested that in CFS - or even close to it. It may be that some people can start to exercise above their 'safe heart rate' in CFS at some point but that is not the expectation. The expectation is that they will be able to increase their level of endurance at a specific heart - increasing their level of fitness. Really moving the bar - and returning to their former level of fitness -is another matter indeed.

    I think over time with more research going into this area - we will learn more about the pathologies associated with exertion. Broderick has a 4 million dollar exercise study grant to look at a large variety of factors...Throw in the Lights, Newton, Klimas, Stevens/Snell and others interest I think we are moving forward to better understand the pathology that is causing the heart rate based exertion problems in ME/CFS.
     
  3. shannah

    shannah Senior Member

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  4. Ernie

    Ernie *****

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    My resting heart rate was 160 bpm last week and took along time to go down. Exercise is highly dangerous for someone with ME. I have also been confirmed to have a new human retrovirus.
     
  5. ixchelkali

    ixchelkali Senior Member

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    Thanks for sharing your observations, that's an interesting distinction. It pretty much jibes with my trial-and-error experience, that carefully paced activity is good most of the time, but when I'm having one of the flu-like periods (feeling feverish, sweats & chills, etc), the best thing is bedrest.
     
  6. DAnnFL

    DAnnFL

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    You might find this article interesting:
    http://circ.ahajournals.org/content/110/4/e27.full - especially under the section of "Etiology of Dyspnea" and the Fig 2 chart. While the info is for heart patients, I had the report on hand for my Social Security disability hearing as the chart clearly showed that my low VO2Max was NOT from deconditioning, rather what they would classify as circulatory impairment. Whether this is true in most ME/CFS cases, I don't know.
     
  7. CBS

    CBS Senior Member

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    GET and ME - a mechanism?

    In a recent article, Hollingsworth et al. found "Impaired Cardiac Function in Chronic Fatigue Syndrome measured using Magnetic Resonance Cardiac Tagging." See PR thread here.

    I'd like to comment on the first sentence of the last paragraph in the conclusions section as it relates to GET and the author's conclusions that the specific type of impaired cardiac function is consistent with hypovolemia:

    If GET can correct low blood volume (I did not explore the mechanisms cited in the paper cited by Hollingsworth et al. - increased vascular tone?), it is my personal belief that it does not directly address the problem and that based upon numerous accounts and personal experience, desmopressin is more direct and exceedingly effective in severe cases.

    If a defect in ADH production is the underlying cause of hypovolemia in ME patients (hypothalmic/pituitary dysfunction?), is it wise to prescribe exercise for ME patients?

    Are ME patients particularly susceptible to the negative impact of "too much" activity in the form of a chronic low grade infection that is repeatedly and easily exacerbated?

    ETA - I just checked the article cited by Hollingsworth et al. There is no reference in that article to a relationship between GET and hypovolemia (Can pacing self-management alter physical behavior and symptom severity in chronic fatigue syndrome? A case series, Journal of Research and Rehabilitation Development,Volume 46 Number 7, 2009, Pages 985 996).
     
  8. fla

    fla Senior Member

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    Montreal, Canada
    I have tremendous respect for Nancy Klimas so I am trying this activity program suggestion. Even though I blame activity for increasing the severity of my M.E. to the point of impending heart failure. I also credit 'uber rest', 'aggressive resting' for bringing me back from the brink to a stable yet totally dysfunctional state.

    The body needs energy to heal itself. Getting a wheelchair and doing almost nothing allowed me to use the tiny energy I had to heal enough to become stable again. To heal any further requires energy I currently do not have. Assuming 97% of the energy loss is from M.E. the other 3% from deconditioning (maybe 99% and 1% who knows exactly?), then reconditioning theoretically could give me another tiny boost of energy. Any extra energy improves the odds of the body healing itself.

    The difference between now and when activity caused a worsening of my M.E. is I have a heart rate monitor and check my morning resting heart rate and also monitor it during activity. I also know that anything mental/physical that triggers PENE lowers my baseline so the energy envelope needs to be strictly respected.

    TL;DR
    "Activity can make M.E. much worse" and "activity can slightly improve M.E." are not contradictory statements if the activity in the latter case is strictly tailored/monitored to respect the energy envelope.
     
  9. Tristen

    Tristen Senior Member

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    I'm looking for an effective , strapless, HRM watch, with real time HR alarm. I don't mind having to touch to get the HR digital reading, but having a real time HR alarm is essential. If it has no alarm, and I have to press the watch to get the pulse, I don't see the difference between doing that and just manually taking my own pulse for free.

    Any suggestions?
     
  10. Suella

    Suella

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    Early morning pulse rate warning protocol. This is cited from one of the Phoenix Rising sites. Alas I've mislaid the exact site:


    > "The Key Measure - Perhaps the key activity management tool, however, is something called ‘resting heart rate’, which is measured after you get up in the morning. Your resting heart rate is measured by obtaining a cheap heart rate monitor (@$30 – Amazon.com) getting up in the morning for a bit and then lying down and taking the reading (before taking any stimulants such as coffee).
    >
    > Pushing through fatigue only leads to more fatigue…You can’t beat it – but you can go around it. Dr. Connie Sol works with Dr. Klimas.
    >
    > Doing this over 10 days or so and keeping a simple activity and symptom log should help you notice how changes in your morning resting heart rate are associated with your symptom and energy levels that day. If you engaged in too much activity/stress over the day or two before – it will probably result in an increased morning resting heart – and a more symptomatic day. Connie Sol stated that if your RHR rises as much as 8% above your baseline level then you need to cut back on your exercise/activities. If you ignore that warning, you’re going to crash.
    > (This means you can use a heart rate monitor to manage your activity levels without doing the VO2 max testing. The VO2 max test can pinpoint the point at which exercise/activity level becomes dangerous but there are ways for the less well off of us to get some an idea of the maximum heart rate we should achieve during exercise/activity without doing the expensive testing…"
     

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