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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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    Weds 11 April, 2pm | One-minute silence in memory of 'Bob' - Robert Courtney

    Bob's funeral will begin in Feltham, London, at 2pm British Summer Time on Wednesday and many of us are joining in a one-minute silence to remember him at that time. We invite you to join us. People overseas are welcome to join in, either at the same time (this will show you when it's 2pm in...
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    In Memory of Bob: A tribute from his friends

    HOW TO ADD YOUR OWN MESSAGE Don’t worry - you don't need to register or give your email address. 1. Click on ‘ADD KUDO/IMAGE/VIDEO’ in the grey bar at the top (a 'Kudo' is a written message). 2. Type your message in the textbox that appears. Optional: If you want to add a picture, click ‘ADD...
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    Are we getting any further away from psych brigade in U.K

    There's the potential for a huge step forward here: http://forums.phoenixrising.me/index.php?threads/uk-short-simple-letter-to-your-mp-to-ask-them-to-attend-the-carol-monaghan-pace-debate-on-20-feb.57791/ And I think that that debate represents how far we've come in the past couple of years.
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    UK: Short, simple letter to your MP to ask them to attend the Carol Monaghan PACE debate on 20 Feb

    Bump. :) Let's get as many MPs to this debate as we can. Please write to yours now, if you haven't already.
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    UK: Short, simple letter to your MP to ask them to attend the Carol Monaghan PACE debate on 20 Feb

    Scottish MP Carol Monaghan has secured a debate on PACE at Westminster next week. It's very important that as many MPs attend as possible. This is a big deal - a major step in the battle against PACE. So, UK folks, I've drafted a short, simple message here that you can just cut and paste into...
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    Request from Dr Leonard Jason to patients to review this PEM questionnaire

    I find this very confusing. 'All the time' that what? All the time that I exist? All the time that I experience the abnormal response to exertion?
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    Do the poll on the NIH/CDC's proposed PEM definition - (POLL NOW CLOSED)

    Bump! The poll is closing early to allow time to write up the report. It will close today at 2pm GMT (just over two hours). Please fill it in, if you haven't already done so. Over 600 responses so far! :)
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    Do the poll on the NIH/CDC's proposed PEM definition - (POLL NOW CLOSED)

    Last night, the poll had over 360 responses already, apparently - let's get it to 500. We want the NIH/CDC to listen to us! :) Do the poll, spread the poll... :)
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    Do the poll on the NIH/CDC's proposed PEM definition - (POLL NOW CLOSED)

    I've just done the poll - very quick and easy. And important! Do the poll! Spread the poll! :)
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    Do the poll on the NIH/CDC's proposed PEM definition - (POLL NOW CLOSED)

    A small group of ME/CFS patients with an interest in research, including Simon McGrath, Graham McPhee, Carly Maryhew and others, are asking for the help of fellow ME/CFS patients with an important issue that will affect biomedical research in the US and elsewhere for years to come. The NIH/CDC...
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    Petition: Appeal to NICE concerning the Guideline Committee for ME/CFS

    Over 2,000 signatures now. Please sign if you haven't already!
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    Petition: Appeal to NICE concerning the Guideline Committee for ME/CFS

    A serious and well-written petition, already with about 1,500 signatures in less than 24 hours, calling on NICE not to stuff its committee for the review of ME/CFS guidelines with GET/CBT proponents...
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    Is NIH/CDC going to use the right PEM definition for all future research? Action needed?

    Thanks for posting this, @Simon. I think this issue of common data elements is hugely important - one of the most important things of 2018, actually. These data elements are going to be the things that select which patients go into all future NIH and CDC studies and how they're measured. If...
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    David Tuller: My brief encounter with Prof Crawley

    A private consultant can order a blood draw at a private hospital. It's all more expense, obviously, but it's possible. I wasn't aware that there was a blood test (ATP) that would indicate problems in PWME, though. Is this solid?
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    David Tuller: My brief encounter with Prof Crawley

    This whole thing is awful. Might there be any mileage in the mother contacting her MP? In all political parties there now seem to be MPs supporting PWME one way or another, with Jeremy Corbyn just the latest example.
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    Rituximab Phase III - Negative result

    I'm not sure that's a safe assumption. What do you think, @Jonathan Edwards?
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    Rituximab Phase III - Negative result

    In order to have the best chance of getting published in a journal, researchers generally like to keep their unpublished research out of the wider public eye so that it's still 'news' when it's published. I'm concerned that your putting that slide on the internet will damage F&M's chances of...
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    Rituximab Phase III - Negative result

    Marky, are you sure it's OK to publish that slide on the internet? The data are marked as 'unpublished' and we don't want to do anything to make it harder for them to publish a paper.
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    Rituximab Phase III - Negative result

    Really sorry to hear that, @deleder2k.
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    UNREST screening and reception at the Speaker's House, House of Commons

    That seems an excellent set of points but I'd take issue with this one. The problem with CBT/GET isn't that they're 'one size fits all'. It's that they've been shown - in PACE, the 'definitive' trial - not to work for ME, and survey data, including the MEA's, indicates that GET causes harm. Not...
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    Would you like to run the ME/CFS events calendar?

    Over four years ago, I started a calendar thread for upcoming ME/CFS events (conferences, webinars, etc.) and @Little Bluestem helped me to run it. People would add details of events to the thread, and I'd edit my first post in the thread so that there was a constantly updated and neatly...
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    UK, Weds 18 Oct: Jen Brea & Omar on ITV news and in The Times with Unrest

    Must admit I don't see that 'yuppie flu' angle. She looks so catastrophically ill in the clip that it would take a special kind of insanity to think that this is anything to do with such a concept.
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    UK, Weds 18 Oct: Jen Brea & Omar on ITV news and in The Times with Unrest

    Damn! Just went out and could have bought The Times. :) I'm assuming the news item might be repeated on the 6:30 pm ITV news but I could be wrong. I wonder if it's been on the BBC? In the ITV interview she sticks the boot into GET and CBT and might be back next Tues or Weds to talk again after...
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    Solve ME/CFS Discovery Forum Saturday 14 October - live coverage

    Do you have a specific weblink? There's all sorts of stuff on Solve's FB. :)