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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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    Has anyone else been diagnosed with adult-onset growth hormone deficiency?

    https://forums.phoenixrising.me/threads/hypothalamic-pituitary-autoimmunity-and-related-impairment-of-hormone-secretions-in-chronic-fatigue-syndrome.84795
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    Hypothalamic-Pituitary autoimmunity and related impairment of hormone secretions in chronic fatigue syndrome

    There are a number of potential causes for CAI. Autoimmunity is just one.
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    Hypothalamic-Pituitary autoimmunity and related impairment of hormone secretions in chronic fatigue syndrome

    There is a lot more important detail in the full text copy. If this might be important to you. reading the full article is worthwhile. Better yet, have your endocrinologist read it. I need to make clear that nothing nor no-one was holding the study up. It was finally published after 7 years...
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    Hypothalamic-Pituitary autoimmunity and related impairment of hormone secretions in chronic fatigue syndrome

    Please don't feel any pressure to respond, especially within some time period. I know how hard it is to be so sick. Just start with our conversation in August, 2016 (it's concise). It basically outlines what was found in this paper (but the paper is a lot more exciting). Once you see what...
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    Hypothalamic-Pituitary autoimmunity and related impairment of hormone secretions in chronic fatigue syndrome

    Save those chats, they might be worth something some day (some of my best work) - ;)
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    Hypothalamic-Pituitary autoimmunity and related impairment of hormone secretions in chronic fatigue syndrome

    It seemed relevant. I've been waiting seven years to make this post. Glad you liked it.
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    Hypothalamic-Pituitary autoimmunity and related impairment of hormone secretions in chronic fatigue syndrome

    Hi Gingergrrl, I figured I didn't have much more to say about CFS research until this study either was published or failed and was forever forgotten. These tests are not available commercially as far as I know. Dr. De Bellis has been working in this area for a couple decades and she is THE...
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    Hypothalamic-Pituitary autoimmunity and related impairment of hormone secretions in chronic fatigue syndrome

    https://pubmed.ncbi.nlm.nih.gov/34254637/ Hypothalamic-Pituitary autoimmunity and related impairment of hormone secretions in chronic fatigue syndrome Annamaria De Bellis, 1, 2, Giuseppe Bellastella, 2, 3, Vlenia Pernice, 2, Paolo Cirillo, 2, Miriam Longo, 2, 3...
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    Blood volume status in CFS/ME correlates with the presence or absence of orthostatic symptoms

    Low blood volume can be difficult to reliably quantify. A potential cause of low blood volume is Central Diabetes Insipidus (CDI). CDI is also difficult to test for reliably, very low specificity when differentiating psychogenic polydipsia (PPD) from CDI. For a few years, research has been...
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    Neuroendocrine disorder in chronic fatigue syndrome

    Even if the patterns were exactly the same, it's quite a statement to rule out any other causes in all ME/CFS patients. Are you aware of any studies showing early (pre-six months from onset) ME/CFS patients without altered Cortisol levels? Again, what about vasopressin (look at early ME/CFS...
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    Neuroendocrine disorder in chronic fatigue syndrome

    That's a pretty definitive statement. I'm curious, upon what is your statement founded? Are you familiar with the role of CRH as a common precursor to both vasopressin and cortisol?
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    Trump Budget Proposes Cutting Social Security Disability Benefits!

    Nothing could be further from the truth with this proposal. It's not socialism but the safety net that is under attack. The proposed cuts are made to accommodate a reduction in the tax rate for corporations from 35 percent to 15 percent, and to decrease the top income tax rate from 39.6...
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    Trump Budget Proposes Cutting Social Security Disability Benefits!

    It depends upon the system you qualify for as well as your earnings history. Medicaid provides the least care and financial support. You don't have to meet any work requirements prior to having become ill. Medicare provides more assistance that Medicaid but requires a minimum number of fully...
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    Trump Budget Proposes Cutting Social Security Disability Benefits!

    Trump’s Budget Cuts Deeply Into Medicaid and Anti-Poverty Efforts https://www.nytimes.com/2017/05/22/us/politics/trump-budget-cuts.html May 22, 2017 Their thinking was that people don't consider SSDI to be the same as Social Security benefits and that "999 in 1000" people will not equate the...
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    Do people ever recover from orthostatic intolerance?

    Drawing only on my own experience, the answer for me is definitely yes. I have completely resolved all OI symptoms with appropriate treatment. The key variable is the cause of a person's OI. In 2009, after 15 years with "ME" associated OI, I was finally diagnosed with central diabetes...
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    Attentional and interpretive bias towards illness-related information in chronic fatigue syndrome

    The appropriate response might be: Attentional and interpretive bias towards psychological factors by Bio-Psychosocial Researchers trying to make a career of "studying" depressed people labelled as having CFS (and CFS patients who mistook these BPS researchers for serious scientists).
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    Attentional and interpretive bias towards illness-related information in chronic fatigue syndrome

    If we'd just stop having all these symptoms we could focus on something other than trying to get back to feeling better.
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    Stanford Neuroendocrine Study now recruiting females age 18-45 in Bay Area

    Recently the Stanford Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Initiative began recruiting for the neuroendocrine study. http://med.stanford.edu/content/dam/sm/chronicfatiguesyndrome/documents/Ad%20for%20Cases.pdf
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    Stanford 2016 Newsletter

    I appreciate that it seems as though research moves at a snails pace. Well designed (and adequately funded) studies take an immense amount of work. From concept to data collection can take years and data analysis to publication can easily add another year. That said, I do want to point out...
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    QMUL v IC + Matthees (PACE Trial) Part 2: Documents, Open Justice and Open Data -Valerie Eliot Smith

    If CBT and GET were even the least bit effective, wouldn't it make sense that the PACE trial would have some small cohort of patients (not just a patient here or there who temporarily convinced themselves to do more and who eventually paid the price for doing so) stepping up to defend the PACE...
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    Only paranoid patients would suspect the CDC of putting politics before public health...

    From a recent Slate article: The Killer Hiding in the CDC Map http://www.slate.com/articles/news_and_politics/foreigners/2016/04/what_caused_haiti_s_cholera_epidemic_the_cdc_s_museum_knows_but_won_t_say.html This is a story about the CDC's public campaign to obscure the source of a six year...
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    NIH intramural research program update

    I appreciate that this is coming out of left field (although I'd argue it is relevant), but did the NIH really pick THE one doctor who comes off as the world's most pretentious douche bag to head up their all important "we're on your side and we're going to solve the CFS/ME challenge as a team"...
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    James Coyne to talk in Edinburgh Monday 16 Nov 2015 7pm

    @Scarecrow I've transcribed the first 12 minutes of part three. E-mail me and I'll sent it to you.
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    Leonard Jason's blog on the IOM criteria 3/4/2015

    Not even the Fukuda criteria were entirely arbitrary. They were chosen based upon a theoretical model (and studied to a significant degree by Dr. Jason who has shown that they performed according to the psychosocial model). The question at hand is our understanding of the performance...
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    ME/CFS meeting at the Royal Society of Medicine - March 18th 2015

    I don't want to take this thread off topic but but I think you'll have more success in refuting its use in ME/CFS if you understand and accurately portray it. You're also likely to get physicians who have seen CBT work in cardiac patients to realize why it is inappropriate in ME/CFS. If you...
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    Leonard Jason's blog on the IOM criteria 3/4/2015

    Anyone who has participated in one of Jason's research has had the 'pleasure' of responding to large batteries of questions (most of which are the same, some I suspect change slightly) on numerous occasions over the course of months (if not years). That's how this is done correctly. It doesn't...
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    Leonard Jason's blog on the IOM criteria 3/4/2015

    Questionnaires and subjectively reported symptoms are quite similar. The process has multiple checks/simultaneously used approaches to minimize issues arising out of the process - as the link I posted states, you never rely on a single type of validity as each are prone to their own types of...
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    ME/CFS meeting at the Royal Society of Medicine - March 18th 2015

    Theoretically, the CBT employed in the PACE trial was intended to address irrational (illness) beliefs, much as it does when used to treat phobias, not psychoses. When employed in an appropriate population (say, cardiac patients who are anxious and potentially immobilized by benign sensations...
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    Leonard Jason's blog on the IOM criteria 3/4/2015

    I agree that it is far from perfect (it does make sense) but the alternative is to do nothing (which is what has been proposed) and that's far worse. None of the present or proposed criteria will likely have any impact on my current Dx or care but I suspect that it may for others. The...
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    Leonard Jason's blog on the IOM criteria 3/4/2015

    Jason would be the perfect person to validate any new criteria. Community psychologists and epidemiologists create and validate symptom based surveys all the time. Agreed, a biomarker would help but even a biomarker would need to validated in this group of patients and that would be no small...