HIP's Post-exertional Malaise Busters for Chronic Fatigue Syndrome (ME/CFS)

Hip and the ME/CFS/FM communities provide possible ways of reducing crashes and flares

  1. AquaFit

    AquaFit Active Member

    Good for you! It's a law of diminishing returns. Same thing (but not with the more dangerous side effects of the more highly synthesized) as athletes using cocaine to boost their performance. A person has to decide when they need a performance boost and just use amino acids for that. You've found your sweet spot and your body lets you know when you've had enough for the time being.

    The best way to boost our performance on an every day basis is with food. "Let food be your medicine or medicine will be your food". A common mistake people make in food intake is to take in sugary carbohydrates in large amounts like pasta and rice and bread and soft bananas. If we take our carbohydrates in the form of just ripe bananas, wild rice and high carb vegetables, and in smaller amounts, we'll produce more of our own amino acids which fuels all of the energy cycles and the transport chains which move them through the body. Oh, and exercise. We need to move around to get those amino acids through the body too. Have fun bowling!
  2. AquaFit

    AquaFit Active Member

    The studies which document vaccine injury remain unpublished in journals that doctors receive. But they are on government websites and can be found by search engines by using the keywords "post vaccination phenomenon" and ASIA or Autoimmune Syndrome Induced by Adjuvants or Shoenfelds Syndrome. Thermisol and aluminum are still present in flu vaccines. Last year's flu vaccine effectiveness was "disappointing" in Canada: http://www.cbc.ca/news/canada/canada-flu-shot-vaccine-skowronski-h1n1-1.3669427

    https://www.ncbi.nlm.nih.gov/pubmed/21483283 "Recently, reports have suggested grouping different autoimmune conditions that are triggered by external stimuli as a single syndrome called autoimmune/inflammatory syndrome induced by adjuvants (ASIA). This syndrome is characterized by the appearance of myalgia, myositis, muscle weakness, arthralgia, arthritis, chronic fatigue, sleep disturbances, cognitive impairment and memory loss, and the possible emergence of a demyelinating autoimmune disease caused by systemic exposure after vaccines and adjuvants. In the current study, the authors reported the first Brazilian case of a woman who developed ASIA, which was characterized by arthralgia, changes in inflammatory markers, and chronic fatigue, after the pandemic anti-influenza A/H1N1 vaccine without causing any other rheumatic disease, and it had a positive outcome."

    Study on nurses "exposed to" (given?) thermisol containing vaccines which showed some have a hard time clearing the toxin if glutathione clearing system not working properly: https://www.ncbi.nlm.nih.gov/pubmed/11007341

    There's more vaccines studied under these terms; Gardasil, Hep B, etc. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4528866/ "We report the case of a 14-year-old girl who developed postural orthostatic tachycardia syndrome (POTS) with chronic fatigue 2 months following Gardasil vaccination. The patient suffered from persistent headaches, dizziness, recurrent syncope, poor motor coordination, weakness, fatigue, myalgias, numbness, tachycardia, dyspnea, visual disturbances, phonophobia, cognitive impairment, insomnia, gastrointestinal disturbances, and a weight loss of 20 pounds. The psychiatric evaluation ruled out the possibility that her symptoms were psychogenic or related to anxiety disorders. Furthermore, the patient tested positive for ANA (1:1280), lupus anticoagulant, and antiphospholipid. On clinical examination she presented livedo reticularis and was diagnosed with Raynaud’s syndrome. This case fulfills the criteria for the autoimmune/auto-inflammatory syndrome induced by adjuvants (ASIA). Because human papillomavirus vaccination is universally recommended to teenagers and because POTS frequently results in long-term disabilities (as was the case in our patient), a thorough follow-up of patients who present with relevant complaints after vaccination is strongly recommended."
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  3. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Great website Seanko - I will put it in the Resource section. Thanks
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  4. jimbridger

    jimbridger Member

    Beware: A study or two doesn't make it scientific evidence. I think highly of Paul Ingraham at painscience.com, which is constantly being updated with a critical scientific eye. In his Supplements review, he reports that only Creatine 5g/day has the weight of science behind it.
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  5. Edie

    Edie Active Member

    I received my last Flu shot about 15 years ago. My FM pain level shot to an all time high for 10 days straight. My Naturopath Doctor told me that it damaged my immune system, but that it would come back to my normal. He gave me the Flu shot alternative in bead form which I put under my tongue once a week during the Winter months. Like the Flu shot, there's a new updated formulation available each Fall. I have no adverse reaction to the bead form. It's called INFLUENZINUM made by a Canadian company called BOIRON. It's available at www.vitepro.ca It's not ready for sale till October. Their phone number is 1-888-887-8822. They can tell you exactly when to order the new version
    Last edited: Sep 9, 2017
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  6. TJ_in_UT

    TJ_in_UT Well-Known Member

    I seem to have more episodes of PEM from being out in crowds/overstimulation than I do from physical exertion. The lactic acid theory just doesn't make sense here because AFAIK brain cells don't use anaerobic respiration, and therefore don't engage in glycolysis or produce lactate (correct me if I'm wrong here).

    If lactate is the problem in PEM from physical exertion, maybe it's because liver function is compromised, and lactate can't be cleared as quickly as usual.
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  7. Abrin

    Abrin Well-Known Member

    This is a good question......I am very interested if someone has an answer to this.
    Mackee likes this.
  8. Hip

    Hip Well-Known Member

    There have been some new updates on the PEM Busters thread on Phoenix Rising that might interest people here. One severe bedbound ME/CFS patient named "hamsterman" devised an amazing approach that allows him to do a grueling cardiovascular gym workout lasting several hours once a week, without getting any PEM repercussions at all.

    All he does is take prednisolone 20 mg, or hydrocortisone 80 mg, around 30 minutes before his workout, and he finds this makes him completely immune to PEM! I find this astonishing! So he now does this once a week. For that one time a week, he has freedom from ME/CFS.

    As a result of such regular weekly exercise, after a year of such workouts, he found his POTS symptoms disappeared (POTS is known to improve with cardiovascular exercise).

    Although his ME/CFS have not improved at all as a result of all this exercise (so much for the GET treatment ideas). But nevertheless, he was able to get himself very fit using this simple trick of taking corticosteroids just before a cardiovascular workout.

    For more info, see the "Corticosteroids for Mental and Physical Exertion-Induced PEM" section of the first post in the PEM Busters thread on PR.

    Of course we know that taking such high doses of corticosteroids daily usually makes ME/CFS worse after a few months, presumably because it allows underlying infections to proliferate as a result of the immune suppression. But "hamsterman" just uses corticosteroids for one day a week, and has not found any adverse affects from that even after a year.
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  9. TJ_in_UT

    TJ_in_UT Well-Known Member

    I'm trying to haul myself back up from overdoing it this week, and had a different idea about the possible cause(s) of PEM. This seems like the place to share it.

    So here's the background, nothing new here:
    ADP is the "energy currency" of our cells. When our activity/stress level only requires aerobic respiration, the mitochondria convert ADP to ATP, which then powers cellular activities. However, if our activity/stress level requires more energy than can be produced aerobically, our cells start using anaerobic respiration. This process converts two ADP into one ATP and a waste product. So each time that happens, we lose an ADP molecule, which means we need to build an ATP molecule from scratch instead of simply converting ADP to ATP. For most folks, that isn't a problem, because replacing lost ADP molecules happens quickly, but in ME/CFS, it takes a lot longer because our mitochondria, which make ATP, aren't working right.​

    Here's my extrapolation (someone correct me if I'm wrong!); maybe this isn't a new idea, but it's new to me. :D
    For us who can't replace ADP/ATP quickly, we now have an energy shortage throughout our bodies, and that's what causes our symptoms. Since different bodily processes have different priorities, some of the remaining ATP/ADP gets moved out of non-essential tissues (such as skeletal muscle) and into high priority tissues (like the brain, liver, and heart). This keeps us alive, but now those non-essential tissues have EVEN LESS energy because it was exported. That's likely to cause muscle weakness, fatigue, pain, and stiffness. Having this widespread energy shortage also provokes a stress response, so we experience fear/anxiety, adding "wired" to "tired". Lack of energy could possibly contribute to the lack of programmed cell death, leaving a lot of nascent cells hanging on by a thread and spewing out inflammatory substances. Lack of energy could also reduce the anti-inflammatory response of our endocrine system, as the creation of cortisol is costly. Since energy is scarce, even our essential tissues/organs get less than needed for optimal function, so we experience brain fog, more sensitivities to toxins and foods (because of impaired liver function), and possibly POTS (from low BP/blood vessel tone).​

    The most insidious part of this process for us is that, most likely, being in a crash temporarily LOWERS our anaerobic threshold -- because the aerobic system is impaired until all the consumed ADP/ATP molecules have been replaced -- making it possible to worsen the crash at a lower level of stress/activity than what started it in the first place. Plus, the heightened sympathetic nervous system activity makes it difficult to get sufficient rest and relaxation. It's a vicious cycle ... if I understand it correctly.