• 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 (FM), 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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    The Research Council of Norway invites ME-patients to propose research projects

    Thanks again. It's not that important! I imagine the projects might run for a few years. Thank you for your help!
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    The Research Council of Norway invites ME-patients to propose research projects

    Thank you @Kalliope ! Do you know how many years the projects are projected to run for?
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    The Research Council of Norway invites ME-patients to propose research projects

    @Kalliope , do you know how many years this amount of funding is for? And the figure, 3.6M in US dollars is correct, right? Tusen takk på förhand!
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    The Research Council of Norway invites ME-patients to propose research projects

    Here's my summary of the outcome, written for my Swedish ME/CFS newsletter in Swedish, and then explained in English for my international advocate friends. (Please notify me if you find something which isn't correct!) Norska Forskningsrådets 30 miljoner till ME-forskning nu utdelade Norges...
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    Pediatric Primer

    I've been asked by several people here in Sweden whether or not this new Pediatric Primer should be used in advocacy efforts / informational efforts. I've finally read it, and I'm having such a hard time making up my mind about it. Can you help? There are many good parts, as pointed out by...
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    The Time is N.O.W. - National Women's Advocacy Organization Joins the Fight for ME/CFS

    @Emily Taylor It would be most helpful to be able to show the NOW letter to Congress from August to women's organizations in other countries. Is it OK to share the August letter now? Do you have a link where it's available?
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    NY Health Commissioner sent letter to every physician in the state about myalgic encephalomyelitis

    Question: Is the New York Health Commissioner the head of New York State Department of Health? I'm including a news piece on this in my Swedish ME newsletter, which reaches 2600 professionals, and I'd like to know how best to word it. If the Commissioner also is the head of the department, I'll...
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    Wego Health Awards: opportunity to recognise individuals & groups. Deadline September 1st

    And then one can do that three times, and endorse you in each of the three categories?
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    Wego Health Awards: opportunity to recognise individuals & groups. Deadline September 1st

    Tom, is it just the one link, or different links for your different categories?
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    Article Invest in ME Conference 12: First Class in Every Way

    @MEMum and @OverTheHills , THANK YOU for this excellent coverage of the IiME conference! Your articles were better than what I've seen written by professionals this year. Amazing effort, thank you so much!
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    (US) House bill eliminates CDC's ME/CFS research program budget

    Quote from another thread: It seems @Emily Taylor was right and the CDC ME/CFS budget is now under immediate threat - again. From SMCI (Solve ME/CFS Initiative): Take action! Restore ME/CFS Funding now! Last week, the House Appropriations Subcommittee on Labor-HHS finally released their...
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    Impact of proposed NIH and CDC cuts on ME Research - and tips on advocacy

    It seems @Emily Taylor was right and the CDC ME/CFS budget is now under immediate threat - again. From SMCI: Take action! Restore ME/CFS Funding now! Last week, the House Appropriations Subcommittee on Labor-HHS finally released their vision of federal spending for Fiscal Year 2018 in H.R...
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    Histamine Elimination Diet

    I've been researching low-histamine diets and I'm finding so much conflicting information. Some interesting blog posts: https://mastcellblog.wordpress.com/2013/07/21/histaminediets/ http://alisonvickery.com.au/histamine-intolerance-which-food-list-should-you-use/...
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    Jarred Younger on CFS subgroups (video)

    A friend of mine emailed Jarred Younger to ask about this. He kindly replied (and quick!) From Jarred Younger: Yes – CRP is elevated in several autoimmune/rheumatic disorders as well as during infections. It is a very general test for inflammation. It is true that if we just found elevated...
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    Theorell et al: Unperturbed cytotoxic lymphocyte phenotype and function in ME/CFS

    To take this issue forward I have emailed Elizabeth Unger at the CDC (no reply yet) and Avindra Nath at the NIH. For Dr Nath's response, see below. I would also love to hear if a comparison of NK cell function in blood vs in isolated cells is something the Stanford/OMF team could include in the...
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    Jarred Younger on CFS subgroups (video)

    I use the Swedish version of energy deficit, it works better than "fatigue" which doesn't explain my situation at all. The other main symtom for me is "flu-feeling". We all know what it is, everyone has had the flu and knows that feeling and just how impairing and horrible that can be, but how...
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    Jarred Younger on CFS subgroups (video)

    I've also been thinking about the word issue. Energy deficit?
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    NIH is estimating LOWER funds for ME research - a WTF?!? moment

    Thank you @Londinium @medfeb @Stewart @viggster and others for clarifying this and explaining the accounting and politics behind the numbers. When I read SMCI's post, I reacted strongly because my immediate thought was: "We need 200 million, they are estimating 6. It's just so disheartening."...
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    Jarred Younger on CFS subgroups (video)

    @Jonathan Edwards , if you have the time, do you have any comments on the above?
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    NIH is estimating LOWER funds for ME research - a WTF?!? moment

    I've always wondered about this statement about Male pattern baldness getting more funds than ME/CFS. I know Klimas said it, but I've never seen any figures showing what is actually spent on Male pattern baldness. Did she really mean NIH or other federal agencies are funding it? With more money...
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    NIH is estimating LOWER funds for ME research - a WTF?!? moment

    Thanks, @Londinium ! I admit I don't know my way around these things - grateful for help - but why wouldn't the estimate take the RFAs into consideration? Wouldn't the estimate logically be the projection of money spent through the general funding mechanism plus RFAs and other mechanisms? If...
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    NIH is estimating LOWER funds for ME research - a WTF?!? moment

    Also tagging @viggster in this thread
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    NIH is estimating LOWER funds for ME research - a WTF?!? moment

    According to Jennifer Spotila the intramural study is not included in that total.
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    NIH is estimating LOWER funds for ME research - a WTF?!? moment

    Don't know if the tags worked, so will re-tag @medfeb @jspotila @JenB @znahle @Emily Taylor @Janet Dafoe (Rose49) @elizabeth234
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    NIH is estimating LOWER funds for ME research - a WTF?!? moment

    I just can't believe NIH is doing this - actually estimating LOWER spending on ME research in 2018 - from 2016 a decrease of 25% - and no change from 2016 to 2017, in spite of promising us a doubling. 2015: 6 million 2016: 8 million 2017 (estimated): 8 million 2018 (estimated: 6 million How...
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    NIH is estimating LOWER funds for ME research - a WTF?!? moment

    I just read this article from the Solve ME/CFS Initiative: http://solvecfs.org/update-on-the-nih-research-funding-totals/ Update on the NIH Research Funding totals July 19, 2017 Earlier this month the National Institutes of Health (NIH) released the updated financial data for categorical...
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    Jarred Younger on CFS subgroups (video)

    Apologies if this has already been discussed, I haven't read the entire thread and i haven't watched the video (very tiny "computer envelope"). Cort writes that the CRP group is probably an infection group, because CRP is usually triggered by infection and not by autoimmune diseases. I would...
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    Wego Health Awards: opportunity to recognise individuals & groups. Deadline September 1st

    Thanks @Tom Kindlon I have endorsed both of you and will try to spread the word! Thank you for all you are doing!