• 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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  1. trishrhymes

    Farewell, until we meet again

    My rather inactive blog can be found at trishrhymes.wordpress.com
  2. trishrhymes

    Farewell, until we meet again

    PR is in crisis. Thank you to all the wonderful people who have made me laugh, cry and taught me so much. The Phoenix will rise again. I don't even have the heart to write a farewell limerick.
  3. trishrhymes

    Mrs Sowester's Magic Beans

    Hang on a minute, I'll just go and make up some fake science. I'll offer it to the science media centre, they're sure to take it up.
  4. trishrhymes

    Mrs Sowester's Magic Beans

    I'd be careful about drawing circles, don't stand in them or you might get struck by lightning and turn into a robot. Edit: Or a parrot.
  5. trishrhymes

    Mrs Sowester's Magic Beans

    Can I take them at the same time as doing my graded exercise therapy?
  6. trishrhymes

    Mrs Sowester's Magic Beans

    I can't see anything on the label saying which orifice to insert them in. Careful scientific reasoning tells me the arsenic ones should go up my arse.
  7. trishrhymes

    New research on treating migraines with ketone supplementation

    Fascinating article. I gather a lot of us suffer from migraines. It's a tiny pilot study but looks promising. Good to see they are doing a bigger double blind trial. I wonder whether it would help other ME symptoms. The bit about energy deficit disorder rings ME bells.
  8. trishrhymes

    Tuller Blog on Comments from NICE's expert reviewers (via FOI request)

    Thanks for clarifying. It's all very confusing!
  9. trishrhymes

    Breaking News! UK ME/CFS Biobank team receives largest ever grant to continue biomedical research pr

    This thread should bring you up to speed. http://forums.phoenixrising.me/index.php?threads/all-members-important-please-vote-on-your-confidence-in-the-pr-board-members-poll.54384/
  10. trishrhymes

    Research Check: can ‘Lightning Process’ coaching program help youths with chronic fatigue?

    Thank you, @Woolie, that's a really helpful analysis.
  11. trishrhymes

    Worth reading: Thinking Critically about ME research

    Good article, made more comprehensive and hard hitting by the addition of a comment by @Valentijn who spells out the inappropriateness of using questionnaires after a 'treatment' that involves brainwashing and magical thinking. Thanks to both. Edit to add: I applaud blogs like this, but...
  12. trishrhymes

    Breaking News! UK ME/CFS Biobank team receives largest ever grant to continue biomedical research pr

    That is fantastic news. Thank you @charles shepherd and to all concerned in the biobank and the research.
  13. trishrhymes

    IOM Criteria to Be used in Research for NIH Center of Excellence

    I get very confused about all the different criteria. It helps me in discussions like this to be reminded of them. Here's what I've found with a quick google search: IOM criteria: A substantial reduction in activity More specifically: A substantial reduction or impairment in the ability to...
  14. trishrhymes

    BPSers using new research to justify psychological treatments

    So Carla was suffering from work related stress and unhappiness. Take away the stress and the symptoms get better. Symptoms 'persistent tiredness, trouble concentrating, sleep disturbances, aching joints'. No mention of PEM, so it's not ME/CFS. What an irresponsible article.
  15. trishrhymes

    More from Science Medica Centre on SMILE

    That's a very good point. I can see that 'black box testing' could be valid in a properly double blinded trial with objective outcome measures. In a sense a drug whose mode of action is not fully understood could be called a black box because we're not clear what it does. But in a trial with...
  16. trishrhymes

    More from Science Medica Centre on SMILE

    Whoever 'Scary vocal critic' is, I want to thank them. An outstanding response. I hope Fiona Fox reads it and takes notice.
  17. trishrhymes

    OMF-Individual Community Symposium Talks Available on OMF YouTube Channel

    Thanks, @Ben Howell . It was a wonderful symposium, so well organised and inspiring. I stayed up late watching it all live from my bed. A memorable experience. I look forward to watching it all again one talk at a time to give myself a chance of actually remembering some of it!
  18. trishrhymes

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    I too am disappointed that Ron Davis's bid did not get funded. I am an admirer of the work of Ron and his team, and, like many here, have donated to OMF to support his work. However, I am also very pleased that 3 excellent projects are getting funding, and think we should not lose sight of...
  19. trishrhymes

    What Psychological Topics Need to Be Researched?

    Thank you, @sparklehoof for explaining your reason for asking the questions and provoking this fascinating discussion. I applaud your wish to help the ME community by doing useful psychological research. I think someone suggested, perhaps tongue in cheek, that research could be done on the...
  20. trishrhymes

    Anyone have a personal assistant or caregiver?

    I'd say prepare carefully what you want to ask the referee about trust and responsibility and ask them to confirm what she has told you about herself is true etc. I think the fact that she has been accepted for nursing school, assuming it's true, is a good sign if she had to pass an interview...
  21. trishrhymes

    What Psychological Topics Need to Be Researched?

    I do understand the need for support and help with coping with severe chronic illness. I don't think research is the way to find the best therapy. The quality of the therapy seems to me to depend on the ability of the particular therapist to help you find ways of coping, which is much more...
  22. trishrhymes

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Thanks, @BurnA. Looks like Ron, Naviaux, OMF are not part of any of the winning bids. But they do all look like really good bids, and there were only ever going to be 3 winners.
  23. trishrhymes

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Only little bits I picked up from stuff about people preparing collaborative bids with other centres, and the mention in these announcements that each will work with a network of other researchers.
  24. trishrhymes

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Can the folk in the USA tell us whether there is any significance in the fact that all the winners are East Coast - 2 New York, 1 Connecticut, 1 North Carolina.
  25. trishrhymes

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    I think all the 'winners' had to be leaders of collaboratives with other centres. OMF and others may be part of one of the winning bids.
  26. trishrhymes

    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    I found the tone and content of the Crawley interview at the end so disconnected from the rest of the program, I thought it was probably pre-recorded earlier in the day, and I guess with the proviso from Crawley that she must be last on the program with no chance for Charles to rebut what she said.
  27. trishrhymes

    What Psychological Topics Need to Be Researched?

    hi @sparklehoof . Your questions at the start of this thread have provoked an interesting and useful discussion. I would be interested to know why you asked the question in the first place. Are you a psychological researcher looking to find a topic to research of use to the ME community...
  28. trishrhymes

    ALL Countries Please sign the MEA's new petition to NICE:do not classify ME as 'functional'

    I have, I hope, signed the petition. I think it's really important. We are in danger of being dumped in the MUS / functional disorders dustbin and denied proper investigation, instead being offered only generic psychological therapy for functional disorders under the IAPT (improving access to...
  29. trishrhymes

    Clinical and cost-effectiveness of the Lightning Process for chronic fatigue syndrome

    Thanks Andy, that looks helpful.
  30. trishrhymes

    Clinical and cost-effectiveness of the Lightning Process for chronic fatigue syndrome

    I want to pass on to someone not on PR a link to information about the Lightning Process, particularly what it involves and patients stories of harms caused. I'm sure I've seen such a resource, but haven't found it. Can anyone help?