• 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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. Spindrome

    New Video - Severe and Very Severe ME/CFS

    Thank you and thanks for sharing.
  2. Spindrome

    New Video - Severe and Very Severe ME/CFS

    CW - New Video - Severe and Very Severe ME/CFS Experts discuss PEM, pain, Orthostatic Intolerance, severity, relapses, poor access to services, lack of medical education, problems with nutrition and common psychological misdiagnosis like FII.
  3. Spindrome

    New Video: ME/CFS - A Brief History - The Lost Decades

    Good to have a doctor that gets it. It’s rare.
  4. Spindrome

    New Video: ME/CFS - A Brief History - The Lost Decades

    I’m made it and am in the UK so it’s from a UK perspective. But GET and Cbt were used in the states from what I’ve heard until they were dropped by the cdc in 2017 but it is still recommended as the cdc did not promote the change. And they are used in Europe and Australia.
  5. Spindrome

    New Video: ME/CFS - A Brief History - The Lost Decades

    Experts, MPs & patients discuss the impact of Psychiatry. Renaming & reframing the illness, the flawed research, the harm & the waste of time/money spent of behavioural studies that have failed to show any benefit.
  6. Spindrome

    Q&A opportunity regarding coronavirus with Dr. Ron Davis.

    Thankyou so much for this. Can ME be triggered by any virus or infection and therefore the novel coronavirus? Have there been any studies of similar viruses to coronavirus and ME/CFS? Are there any reliable estimates on the number of COVID patients that will develop ME/CFS?
  7. Spindrome

    New Video (7 mins) : What is ME?

    Thanks @Wolfcub
  8. Spindrome

    New Video (7 mins) : What is ME?

    Thanks for all the comments. Please check out my channel if you are interested in other videos on ME. https://www.youtube.com/channel/UC0qxkaMaZ733kc-OIahuaYw
  9. Spindrome

    New Video (7 mins) : What is ME?

    Sorry to hear that. It's shocking.
  10. Spindrome

    New Video (7 mins) : What is ME?

    Thanks Revel 🙂
  11. Spindrome

    New Video (7 mins) : What is ME?

    Thanks Gemini!
  12. Spindrome

    New Video (7 mins) : What is ME?

    Experts provide a brief overview of symptoms, severity, problems with exercise, guidelines and pacing. An introduction for people with no prior knowledge of ME.
  13. Spindrome

    New: PACE trial video series

    The PACE trial - Part 1: Moving the goalposts. The authors had a strict plan which they changed after the trial had started. An MP and experts discuss the fundamental problems with these changes. New Video: The PACE Trial: Part 2: Harm Patients, experts and MPs discuss the harm associated...
  14. Spindrome

    New video: Children with ME

    New Short video (5 min) detailing some key issues that children with ME, and parents of those children, face from those in authority.
  15. Spindrome

    OMF-Dr Davis research update (video!)

    Thanks for the update Ben, Do you know if the nanoneedle predicts severity?
  16. Spindrome

    $1,000,000 donation to OMF!!!!!

    Amazing! well done all.
  17. Spindrome

    Possibly huge OMF donation opportunity (86 millions worth)

    Have left a comment
  18. Spindrome

    UNREST screening and reception at the Speaker's House, House of Commons

    Excellent, do you have any preliminary numbers on how many mps are attending?
  19. Spindrome

    Perrin Technique

    Do you have a link? Nothing proven, I think he is close to publishing some work on using his technique for diagnosis I don't think it's treatment though.
  20. Spindrome

    Tickplex a new test for Lyme and Co-infection

    I only just got the email from Armin labs that it's available, Tickplex plus looks a bit pricey, is it worth the extra? I doubt I have Lyme but want to rule it out. The others co infections look like they could be useful though.
  21. Spindrome

    Best Mushrooms for NK cells ?

    Good question is there a test for NK function?
  22. Spindrome

    Best Mushrooms for NK cells ?

    I tried Coriolus, it made me feel worse like most supplements so gave up. Dr. Jean Monro of Breakspear Hospital, has demonstrated in a group of 36 patients who have had defined chronic fatigue syndrome and autonomic dysfunction that Coriolus MRL has been an immuno-therapeutic agent. It has...
  23. Spindrome

    Tickplex a new test for Lyme and Co-infection

    Research 1st: Thanks for such a comprehensive explanation.
  24. Spindrome

    Response from NHS CFS Service

    I had the same experience. You are completely right about GPs believing it's fit for purpose, Ive been dismissed a number of times when I've tried to explain that the ME clinic/treatment was not appropriate. The ME clinic I went to didn't have a doctor, I saw a therapist who didn't even think I...
  25. Spindrome

    Exercise induced relapse - autoimmune theory?

    Great thanks for all the info I was aware of the Hornig paper I will be coming Upto the 3 year mark soon, which is a concern. I will check out the Chris Armstrong link looks very interesting. I'm looking into healing a leaky gut and an antifmlamatory/autoimmune diet as well. I think I may have...
  26. Spindrome

    Tickplex a new test for Lyme and Co-infection

    Thanks for the info. I had an UK NHS test which was negative but I had heard they were unreliable, I think it's unlikely I have Lyme I rarely went to places where I could get bitten and I have no recollection of ever being bitten. I'm just after the single most reliable test preferably cheap to...
  27. Spindrome

    Exercise induced relapse - autoimmune theory?

    Hi all, I suffered a big relapse 2 years ago after I did some yoga. I know that exercise induced relapses are common in people with ME, made worse by GET for example. I've not been able to find any references or discussion on how exercise could be causing these relapses and what could...
  28. Spindrome

    Bad news to the MEA from NICE: no review considered necessary

    Would be interesting to know the patient representative experience of GET if they responded and pro GET its not really a true representation of the patient community. Can we ask for this information? I know that EC always brings along a patient to say how good the treatment is when she goes on TV.
  29. Spindrome

    Bad news to the MEA from NICE: no review considered necessary

    Here is an example of survey monkey https://www.surveymonkey.co.uk/r/customer-satisfaction-survey-template?sm=d9yyh03hx%2fRxh26ptsvay03MP0ZkErSidp5ni5TkqGw%3d A simple approach would be to set up a survey for each clinic and collate them afterwards. It's about £34 a month, There maybe cheaper...
  30. Spindrome

    Bad news to the MEA from NICE: no review considered necessary

    What a great Idea, there are probably off the shelf tools available that could capture that information. Like survey monkey have a cheap monthly subscription. It would also be useful to capture lots of other information like how effective GET was, and if it made people worse after discharge...