• 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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Search results

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    How many people have been ill with CFS/ME for over 20 years?

    I think one of the things behind this would be elevated levels of the cytokine interleukin-6. Here is one study that found elevated levels of interleukin-6 in ME/CFS. http://www.journalofpsychiatricresearch.com/article/S0022-3956(96)00063-5/abstract The presence of IL-6 can lead to reduced...
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    pompholyx / Dyshidrotic Eczema : Anyone else got this?

    Thank you so much baccarat. I recently made a post on this on my Facebook page. Here is the post: DYSHIDROTIC ECZEMA AND PSORIASIS Rebecca, a patient with fibro and autoimmune disease, has a question about dyshidrotic eczema. She asks: " Does anyone else with fibro or lupus suffer from...
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    Neuroinflammation in Patients with CFS/ME: PET study

    I made the following post on my Facebook page today concerning this study. NEUROINFLAMMATION AND CHRONIC FATIGUE SYNDROME New research (study below) has found evidence of neuroinflammation in chronic fatigue syndrome (ME/CFS). In the study, PET scans revealed inflammation in multiple areas of...
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    Detection of Mycotoxins in Patients with CFS

    I posted the following information on my Facebook page recently about why exposure to molds and mycotoxins may be linked to ME/CFS and fibro. MOLDS AND MYCOTOXINS Dangerous molds and the chemical toxins they produce (mycotoxins) have been linked to a number of different diseases including...
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    Chronic Fatigue Syndrome Is Associated With the Risk of Fracture: A Nationwide Cohort Study

    Homocysteine does weaken bone by interfering with collagen cross-linking so I do think it could be relevant. In the following study published in The Journal of Clinical Investigation the researchers stated: “It is concluded that homocysteine interferes with the formation of intermolecular...
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    Chronic Fatigue Syndrome Is Associated With the Risk of Fracture: A Nationwide Cohort Study

    I think this would be related to the elevated levels of homocysteine found in patients with CFS. Homocysteine has been established through numerous studies to be a “strong and independent risk factor” for osteoporosis. Homocysteine may affect osteoporosis by interfering with collagen...
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    Deficient EBV-Specific B- and T-Cell Response in Patients with Chronic Fatigue Syndrome

    Following is some information on this I will be putting up on my Facebook page tonight EPSTEIN BARR VIRUS (EBV) In a new study from Germany (link to study below) researchers found that patients with chronic fatigue syndrome had increased levels of EBV and a deficient immune response to the...
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    The difference between MS and ME

    Hi Aprilk~That is really interesting information. Thank you for posting it. Both CFS and MS patients also have low endorphin levels. For example, the study entitled, "Decreased immunoreactive beta-endorphin in mononcuclear leucocytes from patients with chronic fatigue syndrome patients,"...
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    The difference between MS and ME

    Hi Jenny, Fermented vegetables are filled with vital enzymes and beneficial bacteria. We have eaten them for thousands of years with no ill effects. Our health is dependent on them to a degree most of us cannot fathom. They are not the entire answer however. Many things can destroy enzymes...
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    The difference between MS and ME

    Hi Aprilk1869 and baccarat, I'm glad I checked in here. I almost missed your posts. Aprilk, so glad to hear you are eating sauerkraut. I will check out the website you posted. Thank you very much. Baccarat, I would eat as much of the sauerkraut as you can. If you feel good after eating a half...
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    The difference between MS and ME

    Another condition common to both CFS and MS is Interstitial Cysitis. Researchers in diabetes and rosacea have found "abnormal peptides" that they believe is what triggered the immune response in these diseases. An abnormal peptide has also been found in Interstitial Cystitis (IC). It is called...
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    The difference between MS and ME

    Hi topaz, Here is a study on B12 that states, "In vivo studies demonstrate that the pancreatic enzymes and the ionic environment in the upper gastrointestinal tract are essential determining factors for transport and absorption of cobalamin in man."...
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    The difference between MS and ME

    Hi Topaz, I think the B12 issue is best left to nature. What we know is protease are necessary for the metabolism of B12. The other thing we have seen is a huge possible increase in cancer and overall death risk from trying to resolve the lack of B12 through supplementation.Also, time and...
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    The difference between MS and ME

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    The difference between MS and ME

    Here is the link to the study I referenced. http://ebm.rsmjournals.com/content/232/8/1041.full
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    The difference between MS and ME

    Hi Topaz, I am referring to the entire process of digestion. The entire GI tract needs to be addressed in order to restore the body's ability to properly digest proteins. There is most likely an overgrowth of pathogenic bacteria and yeast, loss of intrinsic factor, insufficient HCL, and lack...
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    Severe muscle wasting not explained by inactivity?

    Hi Ocean, The best example I can give you on why it would not be a good idea to take amino acids is they are the components of dietary proteins and you have lost the ability to digest proteins. For instance, gluten is a protein. A celiac patient avoids gluten because their immune system...
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    Orthostatic Intolerance

    Hi Adreno, I did not say the body had no adrenaline. I said it had insufficient amounts to properly regulate the ANS. There are many different factors that come into play in dysautonomia and POTS. Like I said, the ANS will overreact at times. I think another regulator,nitric oxide,and its...
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    The difference between MS and ME

    Hi Rich, I appreciate your feedback Rich. I do think though that I will stand my ground on DNase 1. Although please understand I am not saying it is simply a lack of DNase 1 that causes autoimmune disease. And I do include CFS under that umbrella, because I believe we have redefined what is...
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    Orthostatic Intolerance

    Most choline in foods is found in the form of phosphatidylcholine. Phosphatidylcholine, also known as lecithin, contains about 13% choline by weight. Choline is also synthesized in the body. Here is the sequence. Choline present in tissues has two origins: exogenous, in food, and endogenous...
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    Orthostatic Intolerance

    Hi Sally, I am sure you know far more about about your condition than I do, and you may have already considered this, but if one of the ANS neurotransmitters is derived from B12 and a lack of B12 would lead to autonomic dysfunction, could the lack of B12 also be responsible for your neuropathy...
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    The difference between MS and ME

    Hi Jenny and Lee Ann, Jenny, I have been in contact with Dr. Woods (fibromyalgia researcher) and will let them take the lead on getting this information published in scientific journals. I think it would be difficult for a layperson such as myself to be taken seriously. Not that I wouldn't...
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    Orthostatic Intolerance

    I think there is a common denominator between all of these symptoms. Lack of pancreatic enzymes called proteases. Under the thread "Severe muscle wasting.." I just posted how a lack of these enzymes would lead to muscle wasting, lack of ATP, glucose hypometabolism, brain fog, and excercise...
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    Severe muscle wasting not explained by inactivity?

    I think this study ties everyone's thoughts together really well. Dufresne mentions digestion, glucose and glycogen. Sparrow mentions ATP and I mentioned tumor necosis factor. The study found that CFS patients were deficient in amino acids. Specifically proteinogenic animo acids (amino acids...
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    Severe muscle wasting not explained by inactivity?

    Hi Ocean- This sounds like it could be cachexia. Tumor necrosis factor has been associated with muscle wasting. http://www.mendeley.com/research/tumor-necrosis-factoralpha-muscle-wasting-cellular-perspective-1/ Tumor necrosis factor is dysregulated in CFS...
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    Anyone Else get ill after exposure to sunlight - not just the heat

    I saw that at least 3 people mentioned porphyria as the connection to sunlight intolerance. I will make it a fourth. If you read up on the symptoms of porphyria they will ring a bell for anyone that suffers from sun sensitivity. This was one of my first symptoms of lupus. Under the thread "A...
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    Petechia - tiny red spots - mainly on arms (burst blood vesels)

    Right Marco, and hyperviscosity can also be linked to endothelial cell dysfunction. http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2141.1980.tb07188.x/abstract The abstract states: "These alterations in viscosity and haemostatic factors in vascular disease are probably related to the...
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    Petechia - tiny red spots - mainly on arms (burst blood vesels)

    Hi FunkOdyssey, here is some information from the first study I posted on the connection to thrombocytopenia and endothelial cell dysfunction. "One clinical aspect of the plateletendothelial cell interaction can be seen in patients with thrombocytopenia. When platelets fall precipitously...
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    Petechia - tiny red spots - mainly on arms (burst blood vesels)

    Hi Glynis, I think the connection to fish oils might be to the lack of Omega 3's found in CFS. Omega 3's are found in abundance in many foods that contain protein. Fish, grass fed meat, walnuts etc. It would just be one more missing nutrient that CFS sufferers would lack if they were unable to...
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    Petechia - tiny red spots - mainly on arms (burst blood vesels)

    Marco just posted this information on another thread. Large and small artery endothelial dysfunction in CFS: David Newton et al, Univ. of Dundee (U.K.), studied 30 patients with CFS (Fukuda) and 27 healthy controls and found that subjects with "ME/CFS have reduced flow-mediated dilatation...