• 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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Search results

  1. J

    Adrenal Insufficiency and POTS

    Not all patients with adrenal insufficiency experience the whole range of symptoms but some "extra" symptoms that might differentiate AI from POTS are that you might expect to feel severe muscle weakness (that doesn't improve), loss of appetite, unexplained weight loss, abdominal pain...
  2. J

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    Seems like the best bet. To be honest I don't think these local TEDx talks get that much attention - someone I know did one a few years ago and it's only got 500 views on YouTube. Maybe if we adopt Jen's strategy of "ignore, ignore, ignore" the talk won't get any publicity. The only thing that...
  3. J

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    Don't know if anyone has already posted this but just saw on Twitter that TEDxBristol have just announced that Esther Crawley will be one of their speakers on November 2nd. Here's what's written about the talk: https://tedxbristol.com/speakers Esther Crawley is a Professor of Child Health at...
  4. J

    Cellular bioenergetics is impaired in patients with chronic fatigue syndrome

    If they only test against healthy controls, how can we know that the results aren't just an effect of inactivity. I wish they would include an extra inactive control group when they do these kind of studies.
  5. J

    The stress of A Levels..

    Hi Emma, I got sick about a decade after I left school so I can't comment on A Levels specifically but I have been studying for a distance learning degree while I've been ill and have had to do several exams a year. I found the best way to get things to stick in my memory was using a Flash card...
  6. J

    I just watched Megyn kelly interview Jen Brea on national tv!

    I watched the show online and was really impressed and thrilled (as always) with Jen and Omar's advocacy work. For those of us who don't live in the US is Megyn Kelly a big thing? Is this a national show or something you would watch in one state - is Megyn Kelly like Oprah and Ellen or more...
  7. J

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    I'm so gutted that they haven't funded Ron - it's heartbreaking to think that this visionary man and his family and team of top scientists who have already given so much to the field are being held back by a lack of funds that are a drop in the ocean of the NIH's budget. I can only imagine how...
  8. J

    Do I have Adrenal Fatigue or Cfs ?

    In fairness, in the video I linked to Dr Bansal states he (and Julia Newton) have early evidence that glucocorticoid receptor function is reduced in ME/CFS patients compared to "normals", leading to what he called a state of "functional Addison's". However the video was from 2014. Perhaps he...
  9. J

    Do I have Adrenal Fatigue or Cfs ?

    Dr Amolak Bansal (a respected ME researcher in the UK) gave a lecture in which he described how some patients with ME/CFS have a kind of "functional Addison's" because although their cortisol levels are normal, they have problems with their steroid receptors such that they may end up...
  10. J

    Have Scheibenbogen, Light, and Bergquist already cracked ME/CFS etiology?

    @Art Vandelay and @Rossy191276 Have you guys with high ferritin had haemochromatosis ruled out as a cause? My mum found out she had it from a 23andme test and there are loads of younger guys on her forum. It's easily treatable but if you don't know you have it, damage (from excess iron) occurs...
  11. J

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    Dr Bergquist could get a side job as a comedian - his talk was brill! :rofl: Really enjoying all the talks - they are nicely pitched for non-scientist patients (like me!)
  12. J

    Scientists trade insults over ME (JHP special issue)

    I think it's quite a good article in some ways. The first sentences will make the biggest impression and they are very negative towards PACE. What I'd really love to know is who provided the story to the Times and how they themselves framed the story. If it was Ed Sykes or Sir Wes then it looks...
  13. J

    5 June - Jeremy Vine BBC R2 - chronic fatigue.....CFS

    How does the blood letting affect you in relation to your CFS/ME symptoms would you say? A close relative has recently been diagnosed with Haemochromatosis and has terrible problems after each pleb. She is completely fatigued and has to lie down and not do much at all for several days. Her...
  14. J

    What type of doctor has helped you the most? (MD, neuro, IM, FM, chiro, naturopath etc)

    I once had an amazing GP who worked in partnership with patients and was willing to try different stuff. Doctors with a generalist training (like GPs or internists) work better for me than superspecialists as I have a lot of diseases and need someone who can think in the round and handle...
  15. J

    Gender bias, MUS, Epistemic Injustice: the evidence

    Doctors can't diagnose men with fibromyalgia, ME, interstitial cystitis or IBS if men don't present as frequently with those symptoms. In the same way that women don't get diagnosed with "psychosomatic" ball pain at the rate men get diagnosed with it (if at all:)). If men present less often...
  16. J

    Ron Davis, Ashley Haugen, Linda Tannenbaum and Raeka Aiyar at IiME #OMF

    Lovely photos - I'm glad Ron and Ashley arrived safely. It's a real shame that you and Witney can't be here too. It must be so hard being left behind (though I'm sure Witney's feeling super grateful that you're there with him). I really hope you guys will soon be in a position to make it over...
  17. J

    How similar is autism to ME/CFS?

    Hard to say. I was unwell for several months with undiagnosed autoimmune hypothyroidism and work stress. Started taking thyroid replacement and then 3 weeks later I got a really bad virus. The ME type symptoms happened after the virus however I also got the symptoms of adrenal insufficiency at...
  18. J

    How similar is autism to ME/CFS?

    I'm not knowledgeable. However I am very interested in any possible link because.... 1) One of my siblings has Aspergers. As does another family member. 2) I have ME 3) My sibling and I both have what is classed as T1 diabetes which is a metabolic disease. However our diabetes was always seen...
  19. J

    If the Norway Rituximab trials are a success - Will it be available worldwide?

    How likely is it that other countries like France, Belgium and the Netherlands would make the drug available in clinics on the basis of the Norwegian results? I could travel somewhere accessible by train but am unable to fly anywhere which rules out Norway.
  20. J

    Gender bias, MUS, Epistemic Injustice: the evidence

    On the other thread I mentioned Gulf War Syndrome which is one of Sir Wes's pet MUS projects and the reason he was awarded a knighthood.
  21. J

    MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

    Wessely's MUS narrative has infected endocrinology for some time. Here's the former head of the British Thyroid Association and well regarded expert on thyroid disease Professor Weetman lecturing the American Thyroid Association on: Challenges of Therapy Dissatisfaction with Thyroid Hormone and...
  22. J

    ME Research UK withdraw from UK CFS/ME Research Collaborative

    I'm intrigued by this too. With psychs like Wessely it is easier to understand how they ended up as MUS peddlars because psychiatrists train in a medical discipline that is well known for its lack of scientific rigour. If you look at EC's publication record, she was publishing more serious...
  23. J

    ME Research UK withdraw from UK CFS/ME Research Collaborative

    What I find so incomprehensible is that doctors, scientists and skeptics get all up in arms about what they call "woo" such as superfoods, crystal healing and "quack" cures. Yet they seem to uncritically accept the concept of MUS without any empirical evidence for its existence. MUS should be as...
  24. J

    The PACE trial [pro]: It’s time to broaden perceptions and move on. Keith Petrie, John Weinman

    As a T1 diabetic I agree with you. Illness beliefs can definitely impact on outcomes in diabetes as treatment requires a high degree of input and self-management from the patient. I have a relative with insulin dependent diabetes who takes a very passive outlook and has what psychologists would...
  25. J

    NIH Director's Blog Post About ME/CFS

    Sounds good - just wish they'd give money to Ron Davis so he can get on with his research.
  26. J

    Daily Mail announces CF (CFS?) and fibromyalgia reclassified as BDS by WHO

    This is some dumb logic. Lots of diseases and conditions have overlapping symptoms - it doesn't mean they have the same pathological cause.
  27. J

    NYT: "Getting It Wrong on Chronic Fatigue Syndrome" by REHMEYER and TULLER

    Because on some human level - it is embarrassing and humiliating to be shown up in a very public way in the international press - hence I feel sorry for people who this happens to - even if they have done something very bad. Mind you, I felt sorry for known tyrant Sadaam Hussein when photos...
  28. J

    NYT: "Getting It Wrong on Chronic Fatigue Syndrome" by REHMEYER and TULLER

    I'm feeling hopeful too. I used to view the BPS crew as nasty tyrants but lately I have come to view them as the underdogs in this situation. I genuinely feel sorry for them because they've built their careers and reputations on a sham. Their house of cards is about to come tumbling down.
  29. J

    WHAT DOES THIS POSITIVE EFFECT OF PREDNISONE MEAN?

    People with Addison's disease don't take 5mg of Hydrocortisone a day - they'd die if they only took that much each day. :eek: A typical replacement dose for someone with Addison's is 15-20mg of Hydrocortisone. This is less than 5mg of Prednisone.
  30. J

    Mitochondrial encephalomyopathy, lactic acidosis, and stroke-like episodes (MELAS)

    Victoza sounds really great :). I'd love to get my hands on some some (1/2 pound a day is amazing!!) Are you still noticing good results today? It'll be interesting to see how it affects your BS when you double the dose after a week.