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

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Search results

  1. Sea

    Rare allele data

    Sorry tango, I don't know what to do either. When I had trouble running the program when it was first created Valentijn had me send her my file and ran it through for me. She is not able to respond to you at the moment though because she is currently on moderation.
  2. Sea

    Tuller & Rehmeyer in STAT: Why did it take the CDC so long to reverse course..

    People's energy is very limited. For me I have thought what has been happening to our forum was so important that it's where most of my energy has gone, especially knowing that if I don't keep up the info probably won't be there later. I am grateful that there are others not involved in the...
  3. Sea

    Rare allele data

    Did you miss this bit? Update: Since the writing of this article, SourceForge has been sold to a new company that stopped the DevShare program discussed in this article. We’re leaving this article here for historical reference, but it has since stopped these shady practices.
  4. Sea

    TMJ (Temporomandibular Joint Disorder) mouth guard?

    If done properly it can be helpful. So can building up some teeth if necessary. The periodontist told my daughter she chewed like a cow :eek: He wasn't being mean though, it was his little joke :D as he explained that her canine teeth were quite short and therefore didn't limit sideways jaw...
  5. Sea

    TMJ (Temporomandibular Joint Disorder) mouth guard?

    Yes to what Strawberry said. I would think a non-custom mouthguard would only be helpful in the situation opposite to yours where because of the muscle tension a person is holding their teeth together (clenching) and they need to facilitate a gap in order to relax the jaw. My daughter's...
  6. Sea

    Google health recommends a psychologist and GET to treat CFS/ME

    Do you know whether they have CFS listed as a psychological condition?
  7. Sea

    Help interpreting amino acid test results

    That's what I thought, so there are several items there that the result is a considerable quantity found where the ref range is not detected. Not sure how it then gets interpreted as normal
  8. Sea

    Help interpreting amino acid test results

    What does "not detected" in the reference range column mean? Does it mean there isn't usually any of that substance found in urine or just that they don't have a reference range for it?
  9. Sea

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

    :aghhh::bang-head::bang-head::bang-head:
  10. Sea

    Vomiting - I can’t be the only one

    She stopped taking the Nexium when it became clear it wasn't good for her. She has recently begun taking a mast cell stabiliser medication and this has made a difference to her ability to tolerate a little wider variety of foods. She is still very limited though.
  11. Sea

    Some concerns about homeopathy

    My brother was one of the measles encepalitis fatalities at 4 years old. The risk for that is far higher than the risk of vaccine damage, but the anti-vax people just don't get that.
  12. Sea

    Some concerns about homeopathy

    No claim? So it wasn't given to you as homeopathic medicine? You have no idea what she gave you yet you are using it as evidence that homeopathy works. At least for this one you are claiming that it was homeopathic medicine that worked, but again true homeopathic medicine has nothing in it so a...
  13. Sea

    Some concerns about homeopathy

    More lucrative than being a pharmacist I think
  14. Sea

    Some concerns about homeopathy

    From the link you gave: "After an in-depth initial consultation, Wendy prescribed two homeopathic remedies plus a probiotic supplement and a change of diet." "Wendy suggested a new diet (which he absolutely loves!) and a course of two different homoeopathic tablets." There is also the...
  15. Sea

    Variation in Working Memory

    I do that too! People think using lists and reminders should entirely compensate for poor memory. While I do find it somewhat helpful it's the working memory dysfunction that makes the system unworkable. I want to put a date in my calendar or an item on a shopping list - I pick up my phone and...
  16. Sea

    Cognitive remediation training improves performance in patients with chronic fatigue syndrome

    Sadly the Mason Foundation has been emailed by several patients with regards to some of the nonsense they're funding but without any positive response.
  17. Sea

    Cognitive remediation training improves performance in patients with chronic fatigue syndrome

    ...and these are the "experts" who the government now turns to to decide what is acceptable treatment for ME/CFS
  18. Sea

    For those who attend the UK's Fatigue Clinics: what your therapist is told/believes

    @hixxy I've heard of about 4 people in the last few months given that reason. I think one was a new application, the others were reviews. You're right, they're not consistent in how they approach assessments, but it is still very concerning.
  19. Sea

    For those who attend the UK's Fatigue Clinics: what your therapist is told/believes

    Centrelink in Australia is now denying benefits to those with ME/CFS on the basis that they are not fully treated and stabilised if they haven't had CBT and GET.
  20. Sea

    Puzzling Test Result

    Another way to determine if there may be infection is to check the white blood cell count in the urine. This is raised in infection even when a culture is negative. In Australia a white blood cell count is a standard part of the test. Also a negative culture doesn't necessarily rule out...
  21. Sea

    Does anyone else have slow wound healing?

    I have slow wound healing and scar easily from small scrapes. I had a follow up appointment with a surgeon after an operation and after checking the wound he refused to believe that I had made the appointment at the proper time until he double checked the date of my operation.
  22. Sea

    Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood

    http://www.meaction.net/2017/03/26/uni-of-south-australia-xbox-increasing-activity-trial-claims-it-has-patient-support/
  23. Sea

    GETSET (white) in Lancet 22/06/17

    But...they did say they didn't expect to achieve as good a result with a self help guide as with "expert" face to face sessions.
  24. Sea

    Help for disability appeal (Australia) - ruled not fully treated

    I would ask for Centrelink's basis for those 3 reasons they gave you. It would be good to know where they get their information from to be able to counter it more effectively. To have made the decision so quickly on those grounds it sounds like either the OT who assessed you or Centrelink in...
  25. Sea

    Help for disability appeal (Australia) - ruled not fully treated

    This is a useful document from American government (so should carry some weight) showing that recommending CBT and GET is outdated. https://effectivehealthcare.ahrq.gov/ehc/products/586/2004/chronic-fatigue-report-160728.pdf This is a blog about it...
  26. Sea

    GETSET (white) in Lancet 22/06/17

    I read it as a ceiling of benefit of GET rather than reaching the ceiling of normality. So for example if the maximum gain that could be had was to say 60, a person at 45 who improved to 60 did better than a person at 55 who improved to 60. I'd have to reread it to see whether I understood them...
  27. Sea

    GETSET (white) in Lancet 22/06/17

    What is even more likely for some is that they did less of other things they were doing before the trial and substituted exercise making it appear they were doing more. Without objective measures we cannot know.
  28. Sea

    Dysregulation of cytokine pathways in CFS and MS

    Dysregulation of cytokine pathways in chronic fatigue syndrome and multiple sclerosis Matthew Sorenson, Jacob Furst, Herbert Mathews & Leonard A. Jason Pages 1-14 | Received 13 Dec 2016, Accepted 23 May 2017, Published online: 07 Jun 2017 Download citation...
  29. Sea

    patent foramen ovale PFO/Cheney/heart hole etc

    I had the bubble test which was positive for a PFO then had a Transoesaphageal Echocardiogram which determined it to be moderate in size. The cardiologist who diagnosed me has a real interest in them as being a contributer to migraine and he recommended I have it repaired. I'm undecided about...
  30. Sea

    Newly diagnosed Compound heterozygous mthfr with cbs, comt mao & ahhhh nobody near me to treat!

    It is a mistaken understanding on their part to say that. They cannot get that information from your data because 23andme do not conduct their test in such a way that the information can be found. Much more detailed tests are required to determine that. Compound heterozygous does not simply mean...