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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Mohawk1995

    Thermoregulation and body temperature

    I think there are two processes involved in regard to temperature that are inter-related, but not the same: Temperature Regulation Temperature Tolerance Both are controlled through Autonomic processes so they would be signs of dysautonomia if they are "dysfunctional". Tolerance is more...
  2. Mohawk1995

    The "Truth" in Medicine - Maybe the inconvenient Truth

    I am starting this thread out of discussion that came up in another thread and I think it would be a helpful topic for others to understand. What I say will likely be controversial, but I hope I present it in a way that makes sense and will help others in their search for the right provider...
  3. Mohawk1995

    A Cytokine-based model for the pathophysiology of Long COVID symptoms

    In my "functional physiology" view (my expertise is not in biomolecular science), the two key features that are consistent between Long COVID and ME/CFS are the shut down of energy production (mitochondrial dysfunction) and Neuro-inflammation (Cytokines being most impactful). This accounts for...
  4. Mohawk1995

    Hot flashes from posture.

    Yes for the vast majority of the time since the initiation of his disease he took an antidepressant/mood stabilizer. No person with ME/CFS should be ashamed to take medication that can diminish the very real chemical and hormonal number this does on our brain. BTW he has attempted to go off...
  5. Mohawk1995

    Hot flashes from posture.

    @xebex He had a similar course. By the 5th year of his disease he was mainly having brain fog, fatigue and irritability as well as requiring more than normal sleep.
  6. Mohawk1995

    Dysautonomia with viruses

    Sorry for the delay in response. I have been very busy with things. His initial symptoms were Headache, Loss of part of his vision (sometimes left and sometimes right), brain fog, sleeping 15-16 hours per day. As time passed the headaches and vision loss became less and the fatigue and brain...
  7. Mohawk1995

    Dysautonomia with viruses

    It took a while for him to get back to "normal" when he was sick. So the symptoms lingered for a bit. Now that he is recovered, he still has some issues from time to time that are minor and go away on their own. Probably in the "normal spectrum" and similar to other people without ME/CFS.
  8. Mohawk1995

    Dysautonomia with viruses

    Our experience with our son was that he was sensitive to many things which worsened or created new symptoms. These included catching a virus, food sensitivities, stress and low pressure systems. Any problem with sleep and of course significant exertion were problematic too. He did not seem to...
  9. Mohawk1995

    Hot flashes from posture.

    @xebex Our son's journey to getting better was a long one and although I think there are some things I learned along the way, I am not sure it is all explainable. Sorry for the long explanation, but I think it was a process that led him (us) down this road. He was diagnosed with "Atypical...
  10. Mohawk1995

    Hot flashes from posture.

    No. I would classify anxiety as more of a conscious/thinking issue although it can be made far worse by a hyper-vigilant or upregulated nervous system. The vast majority (exact percentage is up for debate) of the nervous system is outside the direct control of any person. So this upregulation...
  11. Mohawk1995

    Hot flashes from posture.

    First off there are no "unusual" symptoms with ME/CFS at least in my thinking. All of them in my thinking can be related to an "upregulated" Neuro-immune, Neuro-Protective or Neuro-inflammatory system. This is either the result of: Hyper-Vigilant Dysfunctional Neurophysiology (upregulated)...
  12. Mohawk1995

    Salugenesis and the Cell Danger Response: Dr. Robert Naviaux

    Literally the Elephant in the Room! We get caught up in all of the Metabolic, Viral, Stress and Functional features of ME/CFS that it is easy to forget it is all about energy first and protection second. The combination of a dysregulated system that is energy depleted (with minimal capacity if...
  13. Mohawk1995

    Salugenesis and the Cell Danger Response: Dr. Robert Naviaux

    You would be surprised at how the Blood Brain Barrier concept has been used in Medicine. You are obviously more astute than most and your clarification on lymph drainage on the interior of the brain being what is "new" is better said than I can. The key point is that many in Medicine have and...
  14. Mohawk1995

    Healing crisis vs worsening of condition - how to tell the two apart?

    I would have to agree with @wabi-sabi During the many years and different treatments ((15-20) he received none of the ones that made him worse eventually helped him improve. There were times that we actually took a 1-2 month "vacation" from treatment or seeing doctors. For the first 4 years...
  15. Mohawk1995

    Salugenesis and the Cell Danger Response: Dr. Robert Naviaux

    It refuted the "concept" that the BBB is an exclusive barrier that does not allow for immune responses against antigens originating from the CNS. This does not mean that the mechanism called the Blood Brain Barrier is not a physiological entity. It just suggest that it would be best described...
  16. Mohawk1995

    Salugenesis and the Cell Danger Response: Dr. Robert Naviaux

    Medicine as a science is traditionally poor in looking at systemic or multi-system issues because it is so focused on finding THE Diagnosis. Most if not all issues in the body are rarely that isolated. It is typically the case of this AND this AND this..... Doesn't fit the text books and...
  17. Mohawk1995

    Salugenesis and the Cell Danger Response: Dr. Robert Naviaux

    I think the difference is that Naviaux is a rare scientist who has a very in depth knowledge of cellular physiology and at the same time is able to see the systemic and functional outcome of the CDR. To someone less complex (me) in thinking or knowledge, it is simple. You shut down energy...
  18. Mohawk1995

    Salugenesis and the Cell Danger Response: Dr. Robert Naviaux

    You would think that, but in some ways unless you go looking for something you won't find it. As an example, just 3-4 years ago scientists discovered that there is a lymphatic system in the brain. This is not a cellular phenomenon but a complex system embedded in the meninges. The discovery...
  19. Mohawk1995

    Did Dr. Lerners patients who improved on high dose Valtrex all have positive EA?

    The fact that this is becoming more recognized and that treatments that would be harmful are being disputed has me thinking this even more strongly. I have learned a great deal of how the body functions and responds to the environment we live in. Honestly from what I know, this is the only...
  20. Mohawk1995

    Evidence Based Medicine: Why it matters to be correct in applying it

    Actually anecdotal based medicine is a key part of Empirical Science. Science based on observation of actual people or processes you hope to discover more about. It being a part of Empirical Science then makes it part of Evidence Based Medicine. Anecdotal/Empirical Science has been...
  21. Mohawk1995

    Evidence Based Medicine: Why it matters to be correct in applying it

    I honestly think they are exposed to their own mistakes, but in a way that says you have to have an answer for the mistake. This probably reinforces the mindset that you can't make a mistake. I have seen younger physicians coming out of medical schools in the US with a more reasonable mindset...
  22. Mohawk1995

    i think i figured it out (the cause of cfs ) i will pass on the baton

    I would agree that theoretically all people are capable of getting ME/CFS. It may not even depend entirely on the intensity or duration of the stressor. Certainly in our son's case it had nothing to do with his health prior to onset or his mental health. He was a typical, although highly...
  23. Mohawk1995

    i think i figured it out (the cause of cfs ) i will pass on the baton

    I would caution against this line of thinking with ME/CFS. It has been this type of thinking in medicine that has created many issues with patient care (PACE for instance). There is a difference between having an explanation of a mechanism in a disease and actually understanding the root cause...
  24. Mohawk1995

    Signs indicating incorrect diagnosis of Functional Neurological Disorder?

    My understanding is that Functional Neurological Disorder is a diagnosis based on exclusion of other disorders and the clinical presentation (symptoms) of the patient. Meaning tests are mostly if not completely negative. And the patient presents with symptoms that fit a dysfunction...
  25. Mohawk1995

    How to say that you don't have energy to do something without sounding lazy?

    I think it is great to communicate clearly in these situations (as CaitOS has suggested), but it is also on the person you are speaking with to "learn" to think differently about you. They have a responsibility to get to know you enough to know you are not simply saying you don't want to do it...
  26. Mohawk1995

    Evidence Based Medicine: Why it matters to be correct in applying it

    I thought I would revisit this topic as it is a sore spot for me personally as a clinician that so few understand and practice it as it was originally intended. Great place to start is with the definition: Evidence Based Medicine (EBM): "A systematic approach to clinical problem solving which...
  27. Mohawk1995

    Salugenesis and the Cell Danger Response: Dr. Robert Naviaux

    I have worked in Healthcare for over 30 years and I really don't put a lot of stock into what the rest of the Medical Community thinks about a certain theory. We in medicine have gotten it wrong so many times especially in the world of chronic diseases and chronic pain. I get that we want...
  28. Mohawk1995

    Small fibre neuropathy weirdness?

    xebex, It is important to note that "neuropathy" does not necessarily mean damage. It can mean "unhealthy" or "dysfunctional". There are indeed neuropathies that result in damage, but most appear to be more unhealthy. Instead of thinking of the nerves as either damaged or not, I find it...
  29. Mohawk1995

    Salugenesis and the Cell Danger Response: Dr. Robert Naviaux

    I have been in the medical field for 30+ years as a Physical Therapist and although I am quite familiar with the "healing process", I have not yet heard this term and how it relates to Chronic Disease states such as ME/CFS. His thinking centers on two things: That Chronic Disease states need...
  30. Mohawk1995

    A New Hypothesis for Viral ME Symptoms

    Good to hear on the day being good! My son did not tolerate high-protein (low carb) meals well. I think that lack of carbs just depleted his energy cycle that much more. I honestly think we agree more than we disagree. For instance, I totally agree with the lab science and the empirical...