• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. I

    UK scientists continue to support CBT/GET in letter published in NATURE

    I find it rather hopeful that they have been pushed to publish there comments in Nature... maybe just maybe other scientific journals have had enough of them..
  2. I

    Stop all research using CBT/get on adults and children..

    https://petition.parliament.uk/petitions/166601
  3. I

    AFME and PACE trial

    Not that easy with the U.K. Legal system.
  4. I

    AFME and PACE trial

    Sadly many families believe ayme helps them until the harm has been done..
  5. I

    'Outlawing of intellectual opposition' in uk

    http://www.taxresearch.org.uk/Blog/2016/02/22/the-government-has-announced-the-outlawing-of-intellectual-opposition/
  6. I

    AFME and PACE trial

    They have posted today saying they are after two trustees..
  7. I

    Help please: feedback on awareness info for GP's

    I have given out the ME Associations book to a few GP's and they have read them.. Or at least I have noticed a positive change in attitude after they have been given the information. I would hope that others in other parts of the country would experience the same. It might help if they have...
  8. I

    Help please: feedback on awareness info for GP's

    It is also worth mentioning that the ME association produce an excellent booklet on clinical guidance and ME. I know there out of print right now (feb2016) but it's worth mentioning if they want further information as when they have stock in they will send it out free to GP's ..
  9. I

    Doctor criticises UK medical awards system

    Very much jobs for the boys... You scratch my back and I will scratch yours...
  10. I

    Leeds ME/CFS clinic (UK)

    If your in the uk which I think you are when the MEA has prints off there 'clinical guidance leaflets back in print I suggest you order a couple of copies for your GP practice. They are very good for educating those in the medical profession about what is needed...
  11. I

    Leeds ME/CFS clinic (UK)

    Just be careful because so often these clinics make people worse and then discard them.
  12. I

    Prognosis according to CFS/ME working group (UK)

    Over 30 years I have reloaded and remitted but my general protraction has been a steady decline... I think a lot of the problem with any discussion is that there is probably more than one disease or group of people with me.. Fast diagnosis and quick acceptance of new life style may enable some...
  13. I

    UK: MEA calls for GET & 'false illness beliefs' CBT to be ditched as primary treatments for ME

    I have managed my illness for 30 years without becoming bed bound until I was refered To the local 'CFS clinic' I have left the house once this year other than for hospital and that was in a wheelchair. I can no longer weight bare and my current physio's don't think I will ever walk again...
  14. I

    Action for ME research

    didnt get a very clear answer.. So I have asked for a yes / no answer. It's not that difficult really.
  15. I

    Action for ME research

    can anyone tell me where I can find out more about there research arm? I got a letter today about it but it doesn't seem to actually explain how it's funds are spent. I have asked on there FB wall but I expect like in the past when I have asked difficult questions it will be removed. Any help...
  16. I

    BMJ comments on new PACE trial data analysis

    If we could kill the media circus it would help a lot but I think with Simon Wesley saying earlier in the year there trying to make psychiatry more visable and more acceptable it seems that they will use any client group they can to fulfil that aim...
  17. I

    My GP did something strange.

    My dr takes any notes I have written down as it helps prompt him to chase things up. Infact he asks me to write things down before I see him now and he takes the list or notes away..
  18. I

    BMJ comments on new PACE trial data analysis

    Before I was 'managed' with CBT and GET I had managed on a care plan for 15 years of 16 hrs a week. Since I was put on a CBT and GET programmes I am bed bound and have a care package provided of over 50 hrs a week....
  19. I

    Take part in our Severe M.E. Symposium from home

    They are making a start that has been long over due. Let's hope they listen to the severely ill this time as they should have done in 1990... They have also upped the game as far as patient contact is concerned. I hope other charities have the guts to take in the challenge of interactive debates.
  20. I

    Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

    Name calling really isn't helpful just because you don't agree with my experience and views. It's time we moved forwards from being scared of psychiatry to actually educating them on the illness and making a difference for those who for what ever reason end up under there care... Whilst we are...
  21. I

    Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

    I really do feel that this is a edited document that just serves to encourage paranoia and not be helpful to research or the needs of the ME community at all. Yes so what a professional in a field asks another professional for suggestions.. So what he wouldn't be who I would turn to for advice...
  22. I

    STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013

    Who ever decided to post this thread bought the debate onto this forum. The fact the 25% group is now banning members who don't agree with the statement is indicative of how intollerant it has become to people's differing views. And it isn't one or two people who have spoken up it is a lot of...
  23. I

    STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013

    As a very severely effected patient in the uk I think it's disgusting how the 25% group have left us hanging out to dry by not participating in the collaborative. I am also shocked by the way they have recently treated some very severely sick members of there forum.
  24. I

    Physiotherapy

    Just thought would feed back as it's been a while. He is working mainly on my left side which is more badly damaged by neuropathy and I am very slowly getting more useage back in it. If I am not well enough it's not a problem and he is pleased with me. Were applying the 'I can do what I can when...
  25. I

    Getting a copy of your notes

    I keep considering asking for a copy of my others . I do to think the £50 will cover the time and photocopying costs - seven folders last time I saw them.
  26. I

    Crowhurst: Paralysis Study - 46 Patient Responses

    I hate this symptom especially when I am somewhere like hospital and they have no awareness of it.
  27. I

    What has helped for you - severe progressive patients please.

    You said she has been kicked off her GP's list. If she is in the uk then the local NHS health board has to allocate her a GP. She really needs support to get a GP firstly. I recommend showing any new GP a copy of voices from the shadows a copy of the Canadian consensus criteria and if your in...
  28. I

    Speech Difficulties

    I am aware of ' not needing speech therapist' however there expertise can advise you on equipment that is most suitable to enable you to communicate. I have had no speech for over a week now, this isn't slurred speech it's a totally inability to process thoughts into speech or for them to even...
  29. I

    Speakbook

    May well be useful for people when in sleep paralysis or just too tired to speak. http://www.speakbook.org/
  30. I

    Speech therapy eye gaze boards?

    Was unusually tearful after to be honest but I think that's because it always feels so hopeless when they just give me equipment rather than 'treatment it feels kind of finale we 'discussed' my problems with the speech software - the keyboard is layer out different and i struggle to use it. But...