• 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.

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

Search results

  1. WillowJ

    Possible seizures?

    From what I hear, seizure doctors don't like to diagnose seizure without a loss of consciousness, but they may be able to treat whatever you have. OTOH, migraine and seizure have some pathological similarities, and seizure medications can be used to treat severe migraines. Kind of in like...
  2. WillowJ

    Interesting Interaction

    cookies for everyone
  3. WillowJ

    Coyne Tweets

    I assumed you felt the other one in your signature was reliable? Coyne responded with enthusiasm to the thing of Peter White's I sent him (and 15 minutes later wrote again and said PDW came across as a "prick") and asked for more stuff, so I also sent some links (I don't have what I sent open...
  4. WillowJ

    Probably not important, Willow's out for a bit.

    Ps, of course by ok, I mean everything with my computer and related to this group is ok as far as I can tell, and I am trying to be careful. In my brick-and-mortar world, clearly some stuff is not ok... But of course you all will understand not to say anything about that, especially anywhere...
  5. WillowJ

    Probably not important, Willow's out for a bit.

    I just panicked a bit when I forgot my email password and it was the second one that didn't work, and wanted to make sure no one could get to your info, through me. I worked out what went wrong with the one password (two passwords is cause for concern but one isn't... but I'm setting up a...
  6. WillowJ

    Coyne Tweets

    you have 5 followers and 4 of them are us (I assume that blue egg with the similar username is you, Adrian). Should some of us wait a bit until you get more established?
  7. WillowJ

    Coyne Tweets

    I will make sure that you are not on my Chronically Awesome list, in case I ever make my lists public.
  8. WillowJ

    Coyne Tweets

    Ok, I have sent to Coyne as well. (I borrowed a bit of wording from yours, Tom. )
  9. WillowJ

    Researchgate?

    I might have been a student when I signed up, which could have helped reduce the stringency. I don't recall for sure, though.
  10. WillowJ

    Coyne Tweets

    hope you feel better soon, Sidereal
  11. WillowJ

    James Coyne to talk in Edinburgh Monday 16 Nov 2015 7pm

    Yes. The whack-a-mole is inefficient and the whole idea that this is an ok presumption to make or an ok way to manage any patient, whatever their correct diagnosis, must be ended. It is not ok.
  12. WillowJ

    Researchgate?

    There needs to be an e-patient university that gives out .edu addresses and EBSCO access.
  13. WillowJ

    Researchgate?

    I'm a member there and I haven't published anything? I don't remember my login, however.
  14. WillowJ

    What words have the PACE authors used to dismiss patients' methodological criticism?

    I still think this is important. That's completely unprofessional and obscene, and by doing so he is abandoning his responsibility as a journal editor.
  15. WillowJ

    What words have the PACE authors used to dismiss patients' methodological criticism?

    Parking links I came across while searching for something else: (Some are from the PIs, some from associated persons, and some mixed... I was searching for PW, so he should be in each thread somewhere, but not all of the bits about him are useful)...
  16. WillowJ

    Coyne Tweets

    I found it. http://forums.phoenixrising.me/index.php?threads/peter-white-barts-comments-on-draft-nice-guidelines-insight-into-their-views.1239/ I don't mind sending it but didn't want to duplicate info.
  17. WillowJ

    The boycotted post

    being just a bit careful with my title and first lines just to be on the safe side. And another sentence to fill up more space. That should do it. Ok, here is the text of SW's article on the boycotted site. The PACE Trial for chronic fatigue syndrome: choppy seas but a prosperous voyage -...
  18. WillowJ

    What words have the PACE authors used to dismiss patients' methodological criticism?

    From the boycotted site: See more at: http://www.national elfservice.net/other-health-conditions/chronic-fatigue-syndrome/the-pace-trial-for-chronic-fatigue-syndrome-choppy-seas-but-a-prosperous-voyage I'll load the whole text on another page so it can be seen without adding any more loads to...
  19. WillowJ

    Coyne Tweets

    Did anyone give Coyne or Tuller the bit where Peter White, I think it was, goes through the disability recommendation list (NICE? something else?) and revises all the recommendations to remove, for instance, recommendation that patients should have access to wheelchairs?
  20. WillowJ

    I think it is about chickens

    I never thought of that, either. Or heard it anywhere until now.
  21. WillowJ

    Coyne Tweets

    I have pretty much given up on FB for those reasons, too.
  22. WillowJ

    "Small and vocal minority" - where's that from?

    I guess I don't need to wonder if I'm on a list somewhere or not. Definitely posted stuff under that hashtag.
  23. WillowJ

    Coyne Tweets

    I think he does get how entrenched they are. Because I messaged him and said I was happy to not hold grudges, but I would prefer the people most responsible who had a duty of care, saw some professional consequences. And he said he would say more after his talk, but it was complicated. So...
  24. WillowJ

    Coyne Tweets

    Case just makes things more readable.
  25. WillowJ

    Wording ideas for Facebook ad for Slate article?

    You might put scare quotes around "Like". I had difficulty with that sentence. I often see "liking" posts written with scare quotes. That might improve the readability. I thought I once saw someone question whether PACE trial was the largest trial ever. Maybe some of those longitudinal...
  26. WillowJ

    Scientist' open letter to Horton - independent reanalysis of PACE

    By the way, Jill is being pretty silly on the Twitter of an academic who responded positively and publicly to this letter. There are some other comments, though. Give some good ones a favorite, if you have a Twitter. https://twitter.com/MBVanElzakker/status/665290752050728960
  27. WillowJ

    Is there a way forward for CFS/ME? MNT

    WesselyS was talking about how silly homeopathy was on his Twitter, and I wanted to say something about how some other treatments were no better, but I didn't.
  28. WillowJ

    Coyne Tweets

    Depends what you mean by "lead to". You can recover while doing anything, even underwater basketweaving. The point is, can you prove people's recovery was associated to that in a large, blinded, RCT trial (i.e. is there any point to recommending this for others)? You cannot do that with CBT...
  29. WillowJ

    'O', the Oprah magazine, publishes positive CFS article

    Evidently the December issue has "My Favorite Things" in it, a popular article that people might also buy a single issue for. So this issue will have even wider distribution than "O" magazine in general. They may still be able to tell the increase over usual, because of this particular article.