• Welcome to Phoenix Rising!

    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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    Recommendations for neuropsychologist for evaluation for SSDI

    After much reading, it is clear to me that we need to have a neuropsychological evaluation as a part of records when applying for SSDI. It is also clear that we need to locate a neuropsychologist who is knowledgeable about CFS and the impact it has on the patient. I would appreciate hearing any...
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    Neuro-psych assessment

    Thanks for the link above. More helpful info... I have another one to add as we are the in process of locating a neuropsychologist for an evaluation for SSDI for my son and I just recently found this video, a helpful presentation in 2007 by Gudrun Lange, PhD, a neuropsychologist who has been...
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    Pacific Fatigue Lab, Stockton, CA, fatigue testing, experience with this facility?

    Thanks very much, Eric. I will check their site. Thanks so much! If there is anyone else who sees this who has had experience with PFL I would very much appreciate hearing from you. Thanks to all.
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    Pacific Fatigue Lab, Stockton, CA, fatigue testing, experience with this facility?

    Francelle, Thanks so much for your replies and for these very helpful links! I had tried to search for Pacific on the search engine here but clearly didn't do it correctly as I didn't find these. This is very helpful. Thanks again so much! We are very seriously considering taking our son there...
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    Pacific Fatigue Lab, Stockton, CA, fatigue testing, experience with this facility?

    This facility has been involved in "research, clinical and teaching laboratory focused on the functional aspects of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and other fatigue-related disorders." They state they are able with testing to provide objective data of fatigue which...
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    Vitamin D - Helpful or Problematic?

    The Moon is Blue, Thank you for posting this poll. I find it very interesting. I have also followed your other post regarding this issue. I have tried vitamin D in the past with my son with no noticeable results. He had a very low vitamin D level at that time. As he continues to...
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    Miracle swim cure

    Sushi, Thanks so much for the info. I will contact her. I am also doing some searching online and find that "pilates studio" brings up places that have these as part of their program. I really appreciate your input on this. Cherlyn
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    Miracle swim cure

    Sushi, This is quite interesting about the Pilates reformer. My daughter has definitely found that keeping her leg muscles in shape is helpful with her orthostatic issues. She is able to go to the gym and do squats, etc. If she gets lax with it, she starts getting more lightheaded, more...
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    Minneapolis/Twin Cities area - anyone with a recommendation for this area?

    We are new to the area and I would sincerely appreciate feedback from anyone who can recommend a physician in this area who has some knowledge and understanding of CFS/POTS, even if it is just someone you have heard of from others - MD, ANP, PA-C, naturopath, etc. Thank you!
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    Dhea

    August, aldosterone at that time was low or at best low normal. It's hard to know for sure because I can't remember what his salt intake was when he did this test. The most debilitating issues for him are fatigue and orthostatic intolerance, so definitely aldosterone is something to look at...
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    Dhea

    I appreciate the replies and hope others will continue to chime in. For sure if we try this I would do it with the supervision of a health professional - provided I can find one who is open to such experimentation. However, I'm also not hearing anything here yet that makes me want to rush to try...
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    Dhea

    I would be interested in hearing from those who have had documented moderate to severely low DHEA levels and subsequent response to supplementation. If it was helpful, specifically in what way did it help, e.g. improved fatigue, memory, etc.? I am currently reading an interesting book, "On...
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    IV Therapy

    We have experimented a bit with IV saline for my son, and it is the only thing that has been of noticeable benefit for him. Though the benefit is quite transient, it is awesome. The problem is that he has had these when seeing a physician who is not local and the problem we have had is finding...
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    Physicians/Clinics providing IV saline on site

    My teen son had a couple of infusions of IV saline at one point and it is the only thing that has provided significant relief, albeit very short-lived. Ever since that we have wanted to experiment further with this but the cost was prohibitive as the only choice was via the ER or a home nursing...
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    The See Saw known as CFS...do you have this?

    I'm new to this group - have two kids (teens) with POTS / CFS - one has had some significant gradual improvement over time and one who is continuing to struggle to a debilitating degree. It is an incredibly frustrating roller-coaster ride and I'm sure all here know all too well about that...