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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. J

    bad feeling in legs also when lying down

    Sherby, bingo. You hit the magic words: Glandular Fever also known as Epstein Barr Virus and Mononucleosis. It is a precursor to many neurological diseases such as MS and though the research is pretty scant it is implicated in Peripheral Neuropathies. When you talk about: 1- Does the...
  2. J

    Fatigue and MS

    Despite what many people think, MS is not a straightforward disease. According to my research, the key symptom 'sclerosis' is highly problematic. Sclerosis of the brain stem or any other part of the CNS does not unequivocally prove the existence of MS. There are documented cases of autopsies...
  3. J

    bad feeling in legs also when lying down

    Sherby, given the clarity of your symptoms, are you saying that you never obtained a diagnosis?
  4. J

    bad feeling in legs also when lying down

    The devil is in the detail. (That it occurred in both legs is significant. That it is getting worse is significant.) Has the discomfort appeared gradually over weeks/months/years? Or did it appear suddenly over days? When you first became aware of it, was it in your feet and lower parts of...
  5. J

    bad feeling in legs also when lying down

    Could you be far more specific. Where does the pain occur? Is it above or below the knees? Is it on the outside, inside, back or front of the legs? Does it affect the soles of your feet? Does it feel like itching, tickling, cramping, numbness? Does it feel either hot or cold? Does it occur after...
  6. J

    Mitochondrial damage and viral infection different symptoms in different people

    "which block enzymes" An enzyme is a complex protein molecule which acts as a biological catalyst in the process of creating ATP (Adenosine Tri-phosphate i.e Stored Energy). The purpose of an enzyme is to accelerate chemical reactions and, by means of this process of speeding-up, produce...
  7. J

    ME/CFS diagnostic and treatment guidelines

    Clarification of a Disease - the Differential Diagnosis Francelle, I twice replied to your message earlier but I believe there are some technical issues with the site at the moment. Firstly, I have seen your symptoms posted elsewhere on this forum. And I am sure you have more to add to it. Are...
  8. J

    Mitochondrial damage and viral infection different symptoms in different people

    Mitochondria is called the 'powerhouse of the cell'. It provides us with the energy for sustained exertion and is fundamental to the problem of CFS. Mitochondria produces Adenosine Tri-phosphate (ATP or stored energy) in conjunction with oxygen. When there exists an insufficient supply of...
  9. J

    Skin burning

    One way to differentiate between these various burning sensations is to establish if the burning intensifies at rest. This odd symptom is fairly typical of small fiber sensory neuropathy. Occasionally neurologists refer to it as 'burning worsening at night' which is not as accurate as the...
  10. J

    Small Fiber Sensory Neuropathy - Empire/Blue Cross Clinical Recommendations

    With small fiber neuropathies, the expert consensus considers the alleviation of symptoms the ultimate goal. The reason that the disease cannot be treated seems to lie in a combination of the heterogeneity (vast number of variations) and the fact that the number of causes exceeds a hundred. The...
  11. J

    Small Fiber Sensory Neuropathy - Empire/Blue Cross Clinical Recommendations

    Okay, so we accept that there is no IENFD test in Australia and there is no indication of it being approved by Canberra anytime soon. I think it is fair to say that the government is not interested in a test conducted in most advanced, civilized countries. Little wonder that it is so...
  12. J

    ME/CFS diagnostic and treatment guidelines

    Sensory Neuropathies exhibiting CFS, Pain and Burning Sensory Neuropathies often begin with debilitating fatigue (CFS) prior to the onset of pain and burning. Journal of Neurological Science 2004 Hoitsma, Reulen, Baets, Drent, Spaans & Faber Small Fiber Neuropathy: a common and important...
  13. J

    Small Fiber Sensory Neuropathy - Empire/Blue Cross Clinical Recommendations

    Francelle, the next time a neurologist refers to an IENFD biopsy in Australia, please inform them that it does not exist despite the recommendations of this University of Adelaide PDF...
  14. J

    Painful Peripheral Neuropathies by Marchettini, Lacerenza, Mauri & Marangoni

    I continue to post PDFs and peer-reviewed articles that present compelling evidence. http://web.me.com/medicaljustice/pdf/gbs/painful-peripheral-neuropathies.pdf Key neurologists in this article escalate the seriousness of small fiber peripheral neuropathies. They argue: (a) that the...
  15. J

    Small Fiber Sensory Neuropathy - Empire/Blue Cross Clinical Recommendations

    For those struggling to get a diagnosis, you may find this revealing. This is a Blue Cross PDF instructing doctors to make every effort toward a diagnosis: http://www.empireblue.com/provider/noapplication/f2/s5/t9/pw_ad084881.pdf Synopsis of PDF: (a) Small Fiber Sensory Neuropathy is...
  16. J

    Small Fiber Neuropathy in CFS

    Intra Epidermal Nerve Fiber Density Skin Biopsy IENFD (Australia) This is a reply to Alex's post regarding the incidence of small fiber neuropathy within CFS. It has particular relevance to Australians because the emerging objective test for SNFN is the IENFD biopsy. A major study has been done...