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

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Search results

  1. M

    How I found the underlying cause of my CFS--anti NMDA antibodies

    My daughter tested positive for antibodies to the pyruvate kinase receptors in the basal ganglia.
  2. M

    Just had first appt with Dr. Kaufman

    Such good news re your health @Gingergrrl and your dog.
  3. M

    In Memory of Bob: A tribute from his friends

    Wessely et al have so much blood on their hands.
  4. M

    Dealing with disbelieving doctor

    So sorry @ChrisD that you got this response from the GP. It seems inconceivable to people who have looked at PACE, IOM report etc that docs are still under the psychogenic spell. I have realised in the last few years that until the PACE " wall" is blown away there will be no significant progress...
  5. M

    "Unrest" updates

    I think Mrs Sowester's health has deteriorated recently, which is probably why you have not heard anything. I would recommend you go ahead and organise something. There are a fair few members from the SW area I think.
  6. M

    Are we getting any further away from psych brigade in U.K

    I haven't looked at it, but didn't the OHC (Optimum Health Clinic) produce a piece on cost of MEin Uk relatively recently? I have no idea how accurate etc it is. Mary Dimmock co-authored a paper, from the US point of view.
  7. M

    Please can TeamPR help child threatened with 'intensive inpatient treatment' for failing to recover

    Could I help by going with them to the psychologist? This inhumane treatment MUST be stopped. Most people find it incomprehensible that this can happen in a democratic Western, civilised country. It is more reminiscent of Russia!
  8. M

    Buying/organising home cooked food

    Would there be anyone of your friends who could co-ordinate this for you, maybe just a couple of meals a week to start with, say for a month, as a trial? We are lucky locally with a Mum's group that informally arranges meals for periods when people/ families are ill or otherwise not able to...
  9. M

    David Tuller: My brief encounter with Prof Crawley

    Maybe we have to take a longer term view of the "to who, how or when" the video, or parts of it, are released. (NB I have no insider knowledge re this.)
  10. M

    Please can TeamPR help child threatened with 'intensive inpatient treatment' for failing to recover

    Unfortunately the antibiotics don't work any more.
  11. M

    Please can TeamPR help child threatened with 'intensive inpatient treatment' for failing to recover

    Sorry to hear that. Although Dr Bansal understands more than most he doesn't have any Magic Bullets. He tried a couple of meds with Amber, such as Acyclovir, an antiviral and Amantidine, which is used for Parkinsons. I think it increases dopamine levels. These did not help. He was also able to...
  12. M

    Please can TeamPR help child threatened with 'intensive inpatient treatment' for failing to recover

    Great to hear that Mum is up for a fight. The pack and letter must have really boosted her confidence/resolve. @anni66 now that your daughter has been discharged from Paeds, your GP may be able to refer her on to Dr Bansal direct, although it seems that most NHS referrals are sent straight to...
  13. M

    Please can TeamPR help child threatened with 'intensive inpatient treatment' for failing to recover

    Hi everybody It seems that the priority for now for Team PR is to produce a summary of key points as to why the GP and paediatrician should not be recommending referral for GET etc. Other support is being planned by CG et al. So those who have offered help with refs etc shd be messaged by me...
  14. M

    David Tuller: My brief encounter with Prof Crawley

    Probably would be good to start new thread
  15. M

    David Tuller: My brief encounter with Prof Crawley

    I have her email contact
  16. M

    David Tuller: My brief encounter with Prof Crawley

    The Christmas recess for MPs is 21 Dec to 8 Jan. Gives us time to submit letters to local MP and cc info to others who may be helpful, such as Countess of Mar, MPs who watched Unrest, speaker etc.
  17. M

    David Tuller: My brief encounter with Prof Crawley

    Dr Paul Worthley, who used to work at Burrswood, might be able to help. He works from Shoreham, but is prepared to see people. As X is 15, he may consider seeing her. I do not know if he has seen youngsters before. He attended the Crowboro' screening of Unrest and is certainly keen to get the...
  18. M

    David Tuller: My brief encounter with Prof Crawley

    @Countrygirl I would be happy to help out with paperwork/info gathering/liaising with other groups on this.(or summarising research on harms of GET/pointers from paediatric primer etc) Am I right that she has till Christmas to "make herself better". I must spend the bulk of today on a friend's...
  19. M

    David Tuller: My brief encounter with Prof Crawley

    Lateral thinking. How about anyone who is able in UK, from PR, or other charities/places writes to X's MP voicing concern about threats of hospitalisation in light of paediatric primer/even Nice guidelines say GET shd be in agreement with patient. Also list of harms from etc.Plus Karina...
  20. M

    David Tuller: My brief encounter with Prof Crawley

    I would happily help with funding. The ATP test done by Acumen is currently being assessed/hopefully validated by Oxford scientists, including Karl Morten. It is funded by ME Association and Jamie, with ME, is working for a few hours per week on it as well. When my daughter first had the test I...
  21. M

    David Tuller: My brief encounter with Prof Crawley

    What about Vince Cable? I know it's not his constituency, but he was one of the MPs who attended Unrest screening in Speaker's House. He might be able to suggest a way forward.
  22. M

    David Tuller: My brief encounter with Prof Crawley

    Horrific. These activities need to be made known, but how?
  23. M

    If the Norway Rituximab trials are a success - Will it be available worldwide?

    It is disappointing @Murph, but I do believe it will help further understanding of the physiology and biochemistry of the disease. There may well be a subset of responders. F & M are definitely not giving up on ME research and other researchers worldwide are making progress too.
  24. M

    David Tuller: My brief encounter with Prof Crawley

    Thanks so much for your excellent summary @Countrygirl, so pleased you and friend were able to go. From memory you have been ill with ME for many decades and are probably not the archetypal activist! Go Countrygirl!
  25. M

    Rituximab Phase III - Negative result

    From Prof Mella's talk in the summer at IiME (hope I got the right name) he seemed committed to keep trying with different meds. His comment, if I remember correctly was "It would be surprising if the first one or two immune modulators we tried are the ones that end up being the best for ME...
  26. M

    Mirena coil

    I have a friend who had to stop it because it caused her dreadful depression and worse acne and did not improve her heavy bleeding. She does not have ME, but had endometriosis.
  27. M

    David Tuller: My brief encounter with Prof Crawley

    Well done @Countrygirl and friend. The last funding for LP was not from MRC, but a couple of Trusts most people haven't heard of, with dodgy histories.
  28. M

    Esther Crawley - talk 17th Nov Mood disorders Centre, Exeter Uni

    Someone has gone.
  29. M

    Link to full article to BMJ's Best Practice for ME

    In addition they still keep referring to rehab! Does anyone know what "body awareness therapy" is? p40
  30. M

    Link to full article to BMJ's Best Practice for ME

    I like a lot of it. I agree with above comments. In addition there appears to be minimal understanding of why people with ME have had strong difference in opinions with the "medical specialists". There is no mention of the CBT that was recommended as per PACE was to change patients false illness...