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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Don Quichotte

    Worse performance but normal oxidative phosphorylation capacity

    One of the problems with tests done in vitro is that they skip essential steps. What if the reason for decreased O2 consumption is not abnormalities of mitochondrial enzymes, but abnormalities of delivery of nutrients to the mitochondria (such as would happen in carnitine deficiency for...
  2. Don Quichotte

    Comment by 'Don Quichotte' in 'Epilepsy Clinic appt. sitting before god.'

    1. I tend to agree about neurologists having the biggest god complex. Although not all of them and those that don't are truly outstanding physicians and people. 2. Fortunately, kids are much more resilient and sensible than we tend to think.
  3. Don Quichotte

    Comment by 'Don Quichotte' in 'Epilepsy Clinic appt. sitting before god.'

    This guy definitely deserves your sarcasm. The truth is that the brain is so complex that only some of the disease processes effecting it are at least somewhat understood. Instead of admitting this truth to you (and himself) he chose to play god. My personal advise-let him play with someone else...
  4. Don Quichotte

    Accessible analysis of PACE?

    Also, the SD (24) is higher than the expected change (10). This makes it a very poor parameter to assess.
  5. Don Quichotte

    Accessible analysis of PACE?

    one of the problems with studies that look at subjective/psychological variables is that there is no clearly defined normal. Therefore there is a lot of place for statisticobable, which can easily confuse someone who tries to quickly read the article during a busy day. I tried to "translate"...
  6. Don Quichotte

    Accessible analysis of PACE?

    Very well done.
  7. Don Quichotte

    Comment by 'Don Quichotte' in 'Greenwashing'

    One of the most useful "green-washing" words is ""progress". If you are against GMO then you are against progress. Progress=scientific innovation and our way to improve the world. So, the combination of "profit" and "progress" is a sure winner. People also convince themselves that way-what can...
  8. Don Quichotte

    Comment by 'Don Quichotte' in 'Greenwashing'

    I think the problem is that "profit" has become the buzz-word. As long as you show that something is profitable (either by saving money or by making money) then you have proved your point. It's not that people are greedy. It's that this has become the synonym of excellence. People, departments...
  9. Don Quichotte

    Comment by 'Don Quichotte' in 'Greenwashing'

    And also this- http://www.nature.com/nature/journal/v489/n7414/full/489027a.html
  10. Don Quichotte

    Comment by 'Don Quichotte' in 'Greenwashing'

    Hi Alex, You may find this interesting- http://xa.yimg.com/kq/groups/8368495/62782997/name/Neurotoxins+at+Home+and+in+the+Workplace.pdf
  11. Don Quichotte

    Psychiatrists Invent health preoccupation disorder

    I recently saw a patient for consultation which exemplified this: He was referred by a neurologist, after he had very atypical neurological symptoms, but his lab tests were abnormal and consistent with APLA. (An autoimmune disease which leads to thrombotic complications). I told the patient...
  12. Don Quichotte

    Psychiatrists Invent health preoccupation disorder

    I am trying to understand, why do doctors have the need to diagnose patients with a psychiatric problems, instead of admitting that they do not know what it is. I think that one of the reasons for that is that society expects physicians to know. When a physician says that he/she doesn't know...
  13. Don Quichotte

    BMJ Blog: Edzard Ernst: The “natural” equals “safe” fallacy

    You can't compare AM to conventional medicine. The reason is that AM is not regulated in any way and conventional medicine is. No doubt that the regulatory process is far from perfect and can be improved, but no conventional physician can decide that he/she starts treating patients with a...
  14. Don Quichotte

    Impact of Fluoride on Neurological Development in Children

    It's not only fluoride, it is many other substances which are being used in everyday household items. http://blogs.smithsonianmag.com/science/2012/08/triclosan-a-chemical-used-in-antibacterial-soaps-is-found-to-impair-muscle-function/
  15. Don Quichotte

    Publication bias exagerrates the value of CBT for depression

    People who are depressed are looking for someone to help them see another point of view. Depression in my opinion means feeling that you are stuck, that there is nothing you can do, that you have done everything possible. It is a frame of mind not an illness. It is a request for help. But...
  16. Don Quichotte

    Is there any evidence that deconditioning alone causes pain and fatigue?

    I can understand (and relate to) that. This is the kind of perspective I have gained (and try to disseminate to my colleagues, with a variable amount of success), not from being ill in general, but from having an "unexplained illness" and "hard to believe illness" for a significant amount of...
  17. Don Quichotte

    Is there any evidence that deconditioning alone causes pain and fatigue?

    I don't think it really matters if you are a physician or not. When you become ill, you want to know that the people taking care of you have your best interest in mind, respect you as a person, know, understand and respect your wishes and will do everything to cure or you or at least help you...
  18. Don Quichotte

    Is there any evidence that deconditioning alone causes pain and fatigue?

    Actually my situation was more complex as I had two "different" diseases-one which was managed by pulmonologists and was a life-threatening neuromuscular disorder requiring respiratory support. The other managed by neurologists and was some ill-defined emotional problem (or those who were more...
  19. Don Quichotte

    Is there any evidence that deconditioning alone causes pain and fatigue?

    No, they preferred more "exotic" diagnoses.
  20. Don Quichotte

    Is there any evidence that deconditioning alone causes pain and fatigue?

    I know it was very low. What kept on confusing them was that I had a near normal muscle strength when resting, which rapidly deteriorated upon the most minimal exertion. I would become extremely short of breath during a routine neurological examination, but once they let me rest and recover I...
  21. Don Quichotte

    Is there any evidence that deconditioning alone causes pain and fatigue?

    I have a neuromuscular disorder that causes muscle fatigue. As for a long time it was "unexplained" I had numerous tests. One was a cardio-pulmonary exercise test a few years ago. At the time I had that test, I still managed (somehow) to work full time, do rounds and even walk up a flight of...
  22. Don Quichotte

    Comment by 'Don Quichotte' in 'CFS implications for family, how to communicate?'

    There are two different things: One is very practical, when you need someone's help because of your disability (such as filling out forms or picking up something). The other is wanting their understanding, sympathy and emotional support, but has no practical ramifications. (such as pain from...
  23. Don Quichotte

    Comment by 'Don Quichotte' in 'Therapy session'

    "How do you redefine your whole personality just to survive this thing?" You don't. What I say might not make much sense, but by giving up control over what you can't control, you gain control over what you can control. You don't change your personality (why should you?), but you adapt to...
  24. Don Quichotte

    Psychiatrists Invent health preoccupation disorder

    ] No doubt that there is much to correct in the medical system. But, the problem does not lie in medicine itself. There are many excellent physicians that are unhappy with the way things are and try to correct the system. There many others who care, but are just not fighters in their...
  25. Don Quichotte

    Psychiatrists Invent health preoccupation disorder

    I think that a physician should use all his scientific and humane understanding in order to find the best way to help his/her patient have the best possible realistic outcome. The fact that some physicians use a certain approach as a way to dismiss their patients, doesn't make this approach...
  26. Don Quichotte

    Psychiatrists Invent health preoccupation disorder

    I disagree with that. In fact one of the biggest differences among other form of medical treatment and conventional medicine is that it constantly checks itself. The changes that have occurred since I was in med. school 20 years ago and now are enormous. Just to name a few: Beta-blockers were...
  27. Don Quichotte

    Psychiatrists Invent health preoccupation disorder

    Physicians, by definition either have- "Health preocupation disorder" -if they keep updated with the medical literature, think about their patients etc. Or- "professional neglect disorder", if they do not do all of the above. I personally prefer those that suffer from the former to take care...
  28. Don Quichotte

    Psychiatrists Invent health preoccupation disorder

    This is my personal experience with psychiatric drugs: 2003- As a practicing full time hemato-oncologist, a drug rep. tries to convince me that my patients with cancer have depression (not a normal emotional reaction to their physical illness) and therefore should receive an antidepressant...
  29. Don Quichotte

    [Chalder CBT] The role of acceptance in chronic fatigue syndrome

    I may not be smart enough to understand why this study was published, but the way I understand it: This study is both trivial (obviously, someone who finds it hard to accept his/her illness or anything in their life for that matter is less content with his/her life and less motivated to find...
  30. Don Quichotte

    PACE Trial and PACE Trial Protocol

    Hi Alex, I fully agree with you that comparing our brain (a very complex biological system we know very little about, which functions for years) to a computer (a man created device which usually can't handle what it should do for more than a limited time) is both arrogant (thinking that we can...