• 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

  1. N

    has anyone used braintap?

    Specialist has probably got shares in the company..........
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    Dr David Tuller: A Crowdfunding Wrap-up 13th May 2019

    I find it sad there seems to be very little focus on advocacy on PR anymore @Countrygirl doing a lot to keep people informed but seems very few posts from others.
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    Time to crowdfund the very excellent Dr David Tuller again, Folks!

    Progressing ok but still in need of more publicity in US I reckon. Big respect to Norway with 37 donors so far.
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    Chronic Fatigue Syndrome: Cognitive, Behavioural and Emotional Processing Vulnerability Factors

    they just regurgitate the same old rubbish with words swapped round to freshen it up catastrophising avoidance blah blah blah
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    The i paper print two-page spread on how Prof Sharpe is being driven out of research by ME activists

    they are having to up their game again as the Parliamentary Debates and recent Papers by Wilshere et al, David Tullers work is raising the stakes all the more reason for people with ME to support David Tullers crowdfunding for 2019/20
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    Time to crowdfund the very excellent Dr David Tuller again, Folks!

    Shared this to our local ME group to raise awareness. Suggesting others also share to groups theyre involved in. David's work is contributing a lot to pushing back on the status quo around the world. It is important that as a community we give as much support as possible to his work.
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    ALL countires please sign petition supporting the complaint to the GMC about the PACE authors

    Update on the number of complaints letters submitted now shown on Dr Myhills website as 210 Petition still open 7250
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    ALL countires please sign petition supporting the complaint to the GMC about the PACE authors

    Yes 7002 And brilliant 207 letters is the final total Petition still open
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    ALL countires please sign petition supporting the complaint to the GMC about the PACE authors

    Only 150 signatures needed for this to reach 7000 Not limited to U.K. signatures just give your email address for a Change account if not used before. Chances are if youre one of the 15000 who signed the MEA NICE petition last year you have an account. Please sign it is an important...
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    UK Doctors to get MUS/ME patients to draw pie charts to re-attribute cause of symptoms

    When you’ve drawn the pie chart really large on a big piece of paper put it on the floor and stand inside the circle and shout STOP. Total bollocks
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    ALL countires please sign petition supporting the complaint to the GMC about the PACE authors

    Now 157 letters almost 6700 signatures on petition would hope the members on PR could get behind this petition.........
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    ALL countires please sign petition supporting the complaint to the GMC about the PACE authors

    6500 signatures on petition 150 complaints to GMC Deadline for letters Sunday 25 March
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    Organised Protest against IAPT treatments on March 21st London

    I believe I read that the staff working in these sausage machine “therapy” organisations suffer a lot from work related stress I think the problem is largely down to the system not the individuals working within it. The young woman who did my CBT was pleasant enough. The content and approach...
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    Organised Protest against IAPT treatments on March 21st London

    Really good to see IAPT sausage machine being challenged @Countrygirl Doing CBT on the cheap using people who have had 9 weeks training was never going to be effective but they aren’t looking past cheap.
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    Please sign petition to get NICE to remove CBT/GET from guidelines NOW

    Hi @JenB i see you’ve been tweeting a lot about GET and CBT. This petition is aimed at NICE asking them to do something about the current recommendations before the new guidance is written. It is very important that at a minimum there is a warning that harms have been reported as recently...
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    Please sign petition to get NICE to remove CBT/GET from guidelines NOW

    Tom Kindlon has posted on Twitter and Facebook now heading to 3700. Please sign if not already done and remind your contacts. Sometimes people forget to sign or don’t see your posts so reminders are worthwhile. This is not a petition to Parliament so open to people outside the U.K. @JenB...
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    ALL countires please sign petition supporting the complaint to the GMC about the PACE authors

    Good news @Countrygirl this petition deserves support from all around the world it is great that Dr M and colleagues are taking this action to the General Medical Council. Over 120 people with ME have written complaints in support as well. Please get behind this
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    Please sign petition to get NICE to remove CBT/GET from guidelines NOW

    Hi all please sign and share this petition we should be able to get it up to 5000 it is open for anyone not just U.K. it would be a major step to get movement from NICE on the existing wording on GET/CBT in their guidelines.
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    POLL: In the first 6 to 8 years of your ME/CFS, did you get slowly worse, better or remain stable?

    I have gradual onset a few possible contributors but not one severe illness that I didn’t recover from. I was diagnosed 2 1/2 years ago but recently saw a specialist who says I’ve had ME much longer than that 10 years or more. So I’ve been living with mild ME undiagnosed for 8 years and doing...
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    David Tuller: My brief encounter with Prof Crawley

    I would stump up a good chunk of this as well
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    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    So oxygen gets a better score than hyperbaric. And homeopathy near the top of the list. Mmm.......? Are these all people who have actually experienced the approach they are commenting on. Seems plausible the large unsure score for hyperbaric is due to A - not actually knowing what it is, B-...
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    David Tuller: My brief encounter with Prof Crawley

    Tymes Trust are the best people to advise them. Maybe get an opinion from Dr Speight?? If they need help with a lawyer I'm sure some folks will contribute a few quid through crowdfunding.
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    Long-term daily mHBOT and full recoveries w/ ongoing maintenance

    I've done two sessions a week for the last two weeks. Now up to a total of 7 sessions and doing depth of 24 feet. I'm cautious about saying this because it could be unrelated I feel like I have a little more energy. Sleep hasn't improved in terms of getting off to sleep which is my big issue...
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    Ms Crawley 17th Nov in Exeter Mood Disorders: New research in ME research

    I would bet her talk will be about the effing Smile trial More about how "someone has to give a voice to the patients" :grumpy::vomit:
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    Tocilizumab is amazing, anyone tried?

    Flippant comment alert. How do they come up with the names for these drugs it liiks like something you'd get if you sat a chimp in front of a typewriter.
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    Severe ME Sufferer faces ban on volunteering

    But @Pike has just been told something different and we know everything is being squeezed these days unfortunately the sensible approach of a previous era seems to be in the process of being abandoned in this time of austerity.