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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. F

    Conversation about Walitt (Split Thread).

    The reason why you might hear those things is that ideas that are outside of a paradigm are hard to comprehend, it is not that you or anyone else is stupid. It happens to everyone. Right now in ME there is a sensitivity to being associated with any mental health problems, yet the evidence shows...
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    Conversation about Walitt (Split Thread).

    Again, no one has shown me where he says this cannot be treated.
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    Conversation about Walitt (Split Thread).

    http://www.meaction.net/2016/02/20/nih-lead-clinical-investigator-thinks-cfs-is-psychosomatic/ "The experience of fibromyalgia is very much real to the people who have it. The way that we think and feel is based in electricity and biochemistry of our brains and we don’t really understand how the...
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    Conversation about Walitt (Split Thread).

    Val, that is just your interpretation of what he is saying and it is based on your bias. He never once says it should not be treated. Why is he doing the research if he think it should not be treated? To prove that it should not be treated? How would you explain these studies he has done...
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    Conversation about Walitt (Split Thread).

    That was my first response that necessitated bringing the Walitt issue into this. Yes, Jeanette was upset by how Coyne insulted her about her insulting remarks about Dr. Walitt. She insulted Dr. Walitt. I know you think it is fair to insult Dr. Walitt because ou think he is te enemy, but she...
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    Conversation about Walitt (Split Thread).

    Nowhere did you quote him as saying "Don't treat these people, it upholds their inability to deal with normal life." You are taking his remarks out of context. No where did he say "Don't treat these people, it upholds their inability to deal with normal life." He talks about a complex idea...
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    Conversation about Walitt (Split Thread).

    This is what I mean, when did Walitt ever say "Don't treat these people, it upholds their inability to deal with normal life."?
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    Conversation about Walitt (Split Thread).

    Jeez, Sorry @Kina He believes people with FM are a phenotype and their symptoms do not fit in with the current model of medicine. He does not say that FM is caused by "personal problems". Please do not paraphrase for him, use direct quotes from him. And somotoform does not mean "mental...
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    Conversation about Walitt (Split Thread).

    Just a joke. Should have put a smiley face. It goes to the same point of people needing to be safe from Conye's comments and Walitts speech. It was deep without enough context. Apologies.
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    Conversation about Walitt (Split Thread).

    I quote from the blog: "The recent incident starting with the Facebook posts of Dr. James Coyne on February 27, 2016, is so outside the realm of reasonable and civil behavior and has affected Jeannette’s health so directly and adversely as to render her physically unable to defend herself at the...
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    Conversation about Walitt (Split Thread).

    You are so wrong, watch the video, he says there is a BIOMECHANICAL reason for ME. HE says that, in the interview. You all just do not know how he is using the term psychosomatic. It does not mean "fake" or "made up" it means that interaction with the environment causes biological changes. That...
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    Conversation about Walitt (Split Thread).

    Wow, really? I am saying if someone attacks me I will defend myself. What is wrong with that? Is it because I am a woman?
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    Conversation about Walitt (Split Thread).

    This thread has been split from the thread -- "http://forums.phoenixrising.me/index.php?threads/standing-up-to-coyne-and-against-unfair-treatment-of-me-advocates.43435/" which is why the first sentence refers to Jeanette Burmeister. The thread turned into off-topic comments about Walitt which...
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    Unfolded Protein Response and A Possible Treatment for CFS

    Sheesh, can you forgive a woman for forgetting? :) But you do not tell me how much Biotin you took, how much omega 6 vs omega 3 you eat...but I found out in your old posts. It is VERY POSSIBLE you were not taking enough Biotin, you might need even more than me. A complete deficiency requires...
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    Unfolded Protein Response and A Possible Treatment for CFS

    Yes, there is a possibility that my response to biotin was not from these biotin dependant genes SNPs, but what is the likelihood? And if it happened in other people...? I am not offering proof, just an interesting pattren to see if I can replicate. Do not mistake my understanding that what I...
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    Unfolded Protein Response and A Possible Treatment for CFS

    I think I see where you two are getting stuck. It is not just: SNPs --> gene --> protein --> disease It is also: SNPs --> gene --> protein --> increased risk of disease For example, lets look at selenoprotein genes: http://www.mdpi.com/2072-6643/7/5/3621/htm Although epidemiological...
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    23andme Results. Interesting mutations

    Great to have you here @alicec . This: "I certainly don't give any credence to the myth that COMT+/+ can't tolerate methyl groups - I have no trouble with them." That has been something that has been driving me crazy and it is so ingrained in peoples imagination that it is a notion that is...
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    Unfolded Protein Response and A Possible Treatment for CFS

    All this talk about Porphyria is off point IMO. You can talk about it and test it all day, but if you are not looking for the source of oxidative stress you will not get better. http://www.ncbi.nlm.nih.gov/pubmed/8274157 http://www.ncbi.nlm.nih.gov/pubmed/18567368 It is just another in a long...
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    Unfolded Protein Response and A Possible Treatment for CFS

    http://www.theguardian.com/lifeandstyle/2014/dec/05/detox-myth-health-diet-science-ignorance
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    Unfolded Protein Response and A Possible Treatment for CFS

    Lost of metabolic processes do. Serotonin metabolism by the MAOA enzyme is one. http://www.uniprot.org/uniprot/P21397 And some use H2O2, like Thyroid Peroxidase http://www.uniprot.org/uniprot/P07202
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    Unfolded Protein Response and A Possible Treatment for CFS

    This is true only if the source of H2O2 is from the phagocytes. H2O2 produced outside the phagocyte will slow immune activity.
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    Seborrheic Dermatitis

    Yes, that is what Dr. Wolf told me, that it was important to split the doses through the day.
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    Seborrheic Dermatitis

    Psychological stress will increase ROS http://www.ncbi.nlm.nih.gov/pubmed/14512175
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    Seborrheic Dermatitis

    I am not recommending it for treatment, I am sharing so if people want to try it we can TEST the hypothesis. That is how science works; make a hypothesis, then test it. When those tests are repeatable and consistent, we have a theory.
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    Seborrheic Dermatitis

    I am not making scientific claims, I am hypothesizing.
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    Seborrheic Dermatitis

    Absence of evidence is not evidence of absence. I cannot reveal my contact or her work. I showed you all the evidence I can. there are a lot of people saying much less proven things on here yet you are focusing on me like a cat chasing a reflection on a wall. Because 10000mcg ends my seb derm...
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    Seborrheic Dermatitis

    http://onlinelibrary.wiley.com/doi/10.1046/j.1365-4362.1998.00603.x/abstract http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1545716/ http://europepmc.org/abstract/med/142069
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    Seborrheic Dermatitis

    None of those people in those threads said they were taking it for seb derm. That is the crucial difference. I laid out the evidence fair enough, plus it fixed me. Plus the first woman had side effects from the potassium, not the biotin. I am not saying you should start at 5000mcg, I am just...
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    Seborrheic Dermatitis

    My doctor told me this. My friend confirmed it. Google Dr. Barry Wolf
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    Unfolded Protein Response and A Possible Treatment for CFS

    Even common SNPs can influence risk, yes?