• 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.

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Search results

  1. Hutan

    Dr David Tuller: Call for Retraction of Cochrane Review from Science For ME; Overview of Viral Persistence in Long Covid;Senators United on Long Covid

    We are nearly up to 7,000 signatures. Here's the link to the petition again: https://chng.it/xwQ9bGgcdL We'd really appreciate your support. We now have 30 ME/CFS organisations who have signed the open letter to Cochrane that the petition relates to. Here's the link to the open letter: S4ME...
  2. Hutan

    Dr David Tuller: Call for Retraction of Cochrane Review from Science For ME; Overview of Viral Persistence in Long Covid;Senators United on Long Covid

    Thanks to everyone who has signed - much appreciated. If you haven't yet, please check it out.
  3. Hutan

    Dr David Tuller: Call for Retraction of Cochrane Review from Science For ME; Overview of Viral Persistence in Long Covid;Senators United on Long Covid

    Thanks so much for posting that @Countrygirl. It would be great if people sign the petition to help stop people who have just developed ME/CFS being harmed by misinformed health professionals telling them to exercise their way to health. Here's the link to the petition again...
  4. Hutan

    Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!

    As hopefully one of the 'nice, well-intentioned folks' on Science for ME, I wouldn't agree that this is what the Science for ME forum focuses on. One thing we spend a lot of time on there is examining in detail the evidence for psychogenic based hypotheses of ME/CFS (and concluding that the...
  5. Hutan

    Review of the Midbrain Ascending Arousal Network Nuclei and Implications for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M... (Baraniuk, 2022)

    Hi @HTester, I'm wondering what you are basing that statement on. As far as I can see the story of CCI in ME/CFS is anecdotal, and very muddy anecdote at that. And the evidence for the utility of the stellate ganglion block in ME/CFS/Long covid that I have found seems to consist of a paper...
  6. Hutan

    brian nicholson detained in psyschiatric unit with me cfs for 3 years

    Hi bohemian, the community on the Science for ME forum were very interested in the NICE guideline development process. The forum's press release (see below) might give you an idea about how many people with ME/CFS feel about the guideline. In short, it is a huge advance on the old guideline...
  7. Hutan

    Abilify- Stanford Clinic Patients

    As you say later in your post, wigglethemouse, there are ways. Patients or their insurance company are already paying for consultations and the drugs. There isn't any particular need for blood tests. You might need to pay for activity monitors. But, given the degree of enthusiasm on this...
  8. Hutan

    Abilify- Stanford Clinic Patients

    But, by using a placebo treatment arm and blinding, even if quite a small percentage of participants have a significant response to the drug, then that will probably show up in the treatment averages. If researchers include a scattergram when reporting on a blinded trial, and relevant outcomes...
  9. Hutan

    Abilify- Stanford Clinic Patients

    Personally, I'm very happy for patients and clinicians to think creatively, consider the risks versus the possible benefits, and try things. But, as soon as a drug looks likely to be part of a clinician's tool kit and as soon as those clinicians start thinking about telling other clinicians to...
  10. Hutan

    Mass hysteria may explain 'sonic attacks' in Cuba, say top neurologists

    I can't imagine those diplomats and intelligence officers are going to be thrilled to be labelled hysterics. Perhaps they will have more of a chance of fighting the diagnosis than the usual bunch of young nurses or cheerleaders.
  11. Hutan

    Rethinking childhood adversity in chronic fatigue syndrome

    That's a great list @Woolie. One more problem is the correlation is not causation issue. I think the famous Dunedin study which has followed a cohort of babies through, so far, into their forties, and has done a lot of good work, has fallen into this trap sometimes. A poor family in a wealthy...
  12. Hutan

    Mrs Sowester's Magic Beans

    Just checking in to give you an update. To be honest, I'm feeling a bit disillusioned with Mrs Sowester's magic beans. The cure hasn't happened yet and neither has the kill, although at times the latter has felt close. I haven't had any PEM lately, although that could be because I haven't...
  13. Hutan

    Mrs Sowester's Magic Beans

    Damn, I should have thought of that. @Mrs Sowester, maybe I can have a bulk discount? Three cups of magic beans a week is going to get expensive. No, 3 cups a day would be silly. The reference I found suggested 3 cups a week. If you are going to criticise, get your facts right. I have...
  14. Hutan

    Mrs Sowester's Magic Beans

    I've been trying these beans since this morning and I am impressed. I feel so full of energy. I have developed a rather nasty rash on my chest, I guess that means all the toxins in my body are coming to the surface to be expelled. And a bad stomach ache. But I found this in a health...
  15. Hutan

    Mitochondria theoretical home experiment idea

    Same. Is the test a known thing? I imagine it might be done in lots of classrooms. So the only unknown is how fast the change happens in both you and a control? But I applaud the effort when it's clearly costing you a lot to think it all through and make the video. Good luck and I look...
  16. Hutan

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

    Yeah, that was my initial reaction. And then I read a bit and thought, well it could be worse. But then I read a bit more. And sighed again.
  17. Hutan

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

    Well duh, it is totally obvious now that you point it out. :redface: Success this time. CureME donate page. http://cureme.lshtm.ac.uk/donate-to-cureme/
  18. Hutan

    Help! Daughter's university doing flawed study tying parents perceived illness to students neuroses

    I think it's really wrong of the university to make students' grades contingent on parental involvement. They are supposed to be helping young people become independent. I think the very best thing would be if your daughter could negotiate to do a brief powerpoint presentation to her class on...
  19. Hutan

    Help! Daughter's university doing flawed study tying parents perceived illness to students neuroses

    The ethics of this approach, where something that the parent does or does not do has a direct impact on the child's grade, is one major concern. And earlier, students would have felt compelled to answer their own questionnaires in order to not to have their grade affected. Was there anything...
  20. Hutan

    Cosmopolitan: Millions of Women Suffer From a Disease That Virtually Sucks the Life Out of Them

    Yes, the author deserves a plug for her forthcoming book. Hopefully she gets to do a book tour with the same or bigger reach as the one that neurologist did - Suzanne O'Sullivan, with her book 'It's All in Your Head'.
  21. Hutan

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

    I just tried to make a donation. The donation page is very insistent about entering an address and it has to be a UK address. I'll try again later with the address of the MEA or something. But the Biobank might like to see if they can make donations from overseas a bit more straightforward.
  22. Hutan

    Mycoplasma Pneumonia causing neurological symptoms?

    FWIW At the same time as I and our two children got what seemed to be a gastric flu which was the start of ME, my husband developed walking pneumonia. Our two children started having migraines as part of the list of ME symptoms. I already had the odd migraine, but they became more frequent...
  23. Hutan

    Grey and white matter differences in Chronic Fatigue Syndrome

    :eek: (although I often suspect my brain has moved to a vegetative state)
  24. Hutan

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

    Singing a song about it at a very large sporting event maybe?
  25. Hutan

    Interview with Dr. Mark Vink (English version)

    This is worth reading. Very moving and nicely translated. Edit - and slams PACE :)
  26. Hutan

    MEA website question for October: Melatonin for sleep disturbance

    Thank you Dr Shepherd, much appreciated. My son attended the Fatigue Clinic at the Royal Children's Hospital in Melbourne for a 40 minute appointment. He was diagnosed with CFS, prescribed ritalin and melatonin and told to come back in 4 months. This, despite the fact that he had no problem...
  27. Hutan

    MEA website question for October: Melatonin for sleep disturbance

    Before giving children and adolescents melatonin please be aware of the following view: (copied from previous posts) Here's Professor Kennaway's paper. He is a well respected scientist working on reproductive biology in domestic animals and has substantial experience with melatonin...
  28. Hutan

    More from Science Medica Centre on SMILE

    From Scary Vocal Critic's excellent comment: I had not fully appreciated that the intention of the trial was to count both school attendance and home tuition. Having supported my son through periods of both, I know that school attendance requires quite a different (and much better) level of...
  29. Hutan

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    This is a game-changer, I'm very happy. :) Organisations all around the world refer to Cochrane when deciding on the standard treatment for ME/CFS and it seems to be impossible to make headway with an argument that Cochrane is wrong. I look forward to hearing more in due course.