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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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Search results

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    "The incredible story of the PACE trial for ME/CFS" by K. JOHNSTONE (December 2023)

    Start of introduction: The incredible story of the PACE trial for ME/CFS | Introduction K. JOHNSTONE DEC 14, 2023 Several months ago I took on a huge project: to write a history of the PACE trial, a notorious 2011 clinical trial which tested treatments for myalgic encephalomyelitis / chronic...
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    Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!

    A lot of online forums for ME/CFS are fairly inactive or have died completely, probably due to Facebook groups and other online social media. It's great for people who are not on Facebook to have options like Phoenix Rising. A big thank you from me for all the moderators, board members and...
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    This is science? Unexplained chronic fatigue and interpersonal problems

    I'm afraid I don't know anything more. It was discussed briefly here: https://forums.phoenixrising.me/threads/this-is-science-unexplained-chronic-fatigue-and-interpersonal-problems.1516/ I presume you have a copy of the full text. If not, I have uploaded a copy here though please don't share...
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    Article Doctors with ME Confront the Taboo of Suicide

    Interesting Twitter thread on topic (not specific to ME): “My research as a critical suicidologist means I often critique nonconsensual (carceral) psychiatric care. Lots of people have asked what I recommend as an alternative. 🧵”
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    What items/documents would you like to send to GPs/primary care physicians if you were doing a mail-out?

    Thanks for your interest. Here's the current draft covering letter (minus a few identifying bits of information): I’m writing to let you know that we’ve organised <webinar details> Among other things, it has been observed internationally that Covid -19 can lead to a post viral fatigue syndrome...
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    What items/documents would you like to send to GPs/primary care physicians if you were doing a mail-out?

    I thought I would brainstorm on this as there may be documents I’ve forgotten about or was never aware of. They don’t have to be long: one- and two-page documents can also be useful. I’m personally interested in English-language documents (the discussion could still be of interest to people in...
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    Famous (and sort of famous) ME/CFS sufferers

    For what it is worth: https://www.gossipcop.com/cher-at-deaths-door-with-rare-illness/201748/
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    Famous (and sort of famous) ME/CFS sufferers

    This doesn't look like it is definite. https://www.gossipcop.com/was-ryan-seacrest-diagnosed-with-an-incurable-disease-after-surprise-vacation/199949/ Ryan Seacrest
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    Celebrating ME/CFS Awareness Day - In So Many Different Ways

    From Cort Johnson: https://www.healthrising.org/blog/2021/05/12/celebrating-me-cfs-fm-awareness-day-in-so-many-different-way/
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    Famous (and sort of famous) ME/CFS sufferers

    I saw a message somewhere were someone wondered whether the writer Kafka might have had ME. I happened to come across the following on Tumblr today.
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    $1.5 M Raised During Triple Tuesday OMF!!

    I checked the Charity Navigator website for the entry and Open Medicine Foundation https://www.charitynavigator.org/index.cfm?bay=search.profile&ein=264712664 In 2016, their income was: $1,627,743 Their expenditure was: $1,053,726 In 2017, their income was $2,657,107
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    $1.5 M Raised During Triple Tuesday OMF!!

    They got a $5,000,000 donation from a bitcoin investor in one year. But generally their income isn't anything like $10-$12,000,000. I very much doubt they are paying 70% of the salaries of 60 researchers. I'm not sure where you got the figure of 60 from; loads of people on their advisory group...
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    $1.5 M Raised During Triple Tuesday OMF!!

    A lot of researchers would not be solely working on ME/CFS matters. Also Ron and his team did get a multi-million dollar grant and could apply for others.
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    ME/CFS Study Participants Needed at NIH

    Yes ccording to one person who participated in it, there is a stipend of around $600 for the 1st visit and $1000 for the 2nd visit. https://forums.phoenixrising.me/index.php?threads/nih-still-needs-patients.58263/ This is on top of getting most or all of your expenses paid (people's...
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    ME/CFS Study Participants Needed at NIH

    ME/CFS Study Participants Needed at NIH October 22, 2018 Greater community participation will help expand the impact of this important study regarding the biological basis of ME/CFS <https://solvecfs.org/me-cfs-study-participants-needed-at-nih/>
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    NIH ME/CFS Telebriefing October 23, 2018

    I forgot about this. I hope some people did listen in or it would give the impression that there is not much interest in such events. This would not be a good message, especially when complaining about the closing of the CFSAC. I would have been more likely to remember it if they had mentioned...
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    Pitfalls in cytokine measurements - Plasma TGF-β1 in chronic fatigue syndrome.

    Free full text: https://www.njmonline.nl/getpdf.php?id=2020
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    Comment by 'Dolphin' in 'My research obsession'

    Do you mean "Voices from the Shadows"?
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    Tricyclic Antidepressants Work for Me

    Sorry to hear this happened you. May I ask whether you had constipation/IBS-constipation before taking the drug? In my case, it slowed things down but that suited me as my bowel had become overactive. I developed this a few years into the illness when my illness was getting worse (I was...
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    Tricyclic Antidepressants Work for Me

    I get 8.5-10 hours sleep on 25 mg of Surmontil (trimipramine). That helps recovery from the previous day quite a lot. Even though amitriptyline is supposed to be more sedating, I got an hour or less sleep on it. Having put a lot of weight on weight on Surmontil and then amitriptyline, I have...
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    PACE trial funding: FoI requests

    http://meactionuk.org.uk/magical-medicine.htm
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    PACE trial funding: FoI requests

    Those RAE submissions are very important to universities. I doubt they are very inaccurate.
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    PACE trial funding: FoI requests

    FINE got £400,000 odd from Department of Health along with £800,000 odd from MRC. PACE had a lot more participants and generally was a much bigger trial. Approval for them was announced together. I’m very sceptical the Department of Health only gave £200,000 to PACE.
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    PACE trial funding: FoI requests

    It looks like they may have just looked payments to QMUL. There were seven centres. Also the time period is only for 3 years which seems odd.
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    PACE trial funding: FoI requests

    Here are two sources for the £5m or so. =====Source 1 ===== http://tinyurl.com/ydsv857 i.e. http://www.rae.ac.uk/submissions/ra5a.aspx?id=176&type=hei&subid=3181 You are in: Submissions > Select unit of assessment > UOA 9 Psychiatry, Neuroscience and Clinical Psychology > University of...
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    Have you been misled...? // What is PACE? // Medical Scandal

    Have you been misled...? // What is PACE? // Medical Scandal by Jessica Kellgren-Fozard --- (Published on 7 May 2018) Accessible video. As well as talking about the PACE trial, she talks about how some of her symptoms were psychologised and how at one stage, she was effectively detained in a...