• 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. CFSTheBear

    Dr. MONTOYA fired in Stanford!

    What the hell is wrong with people that they don’t start their default position as believing those who bring up accusations of sexual harassment?
  2. CFSTheBear

    Low dose Naltrexone

    I recently had to stop taking low dose naltrexone, unfortunately. After a few days of better mood and mildly better energy it started causing severe nerve pain and intense physical and mental fatigue. I kept taking it in the hope it’d clear but unfortunately after 2.5 weeks had to give up. This...
  3. CFSTheBear

    PBS doc on James Watson (OMF board member)

    Thanks for posting those links @Silencio, I feel very ignorant of having not known about this until now. Found these quotes particularly bad :( “Some anti-Semitism is justified” “Whenever you interview fat people, you feel bad, because you know you’re not going to hire them” “Japan should be...
  4. CFSTheBear

    PBS doc on James Watson (OMF board member)

    PBS has a documentary out about James D Watson, who sits on the board of OMF. He won the Nobel Prize in 1962 for his role in the research that revealed the structure of DNA. Watson went on to serve as the first director of the Human Genome Project and founded Cold Spring Harbor Laboratory. But...
  5. CFSTheBear

    Anyone tried Limbic Retraining: Dynamic Neural Retraining System?

    Does anyone have a copy of this they’d be prepared to lend / share as a digital file? I’m happy to pay for it but would prefer to try a segment of it first before stumping up the cash.
  6. CFSTheBear

    Enhancing Coffee enemas

    This is not to dissuade anyone from their own experimentation, but I do think that there is a responsibility to point out the potential harms of treatment and lack of research in the topic. Quoting from Healthline: Potential harms: You’re likely aware of this, but I think it’s important to...
  7. CFSTheBear

    Low folate - but may not be able to supplement due to mcas. Ideas?

    Ah - that’s reassuring - would you be able to share what brand etc you use?
  8. CFSTheBear

    Low folate - but may not be able to supplement due to mcas. Ideas?

    Thanks - yeah I’d been meaning to seek out some non corn-based vitamin c to see if that was the issue and if this would help. I already take quercetin and had to rotate through a couple of different preparations before I found one that agrees with me. I do really appreciate the advice -...
  9. CFSTheBear

    Low folate - but may not be able to supplement due to mcas. Ideas?

    I mean...I disagree with nothing that you’ve said, but if you have mcas you’ll appreciate it’s rarely as simple as “need x, so supplement it”. To quote a few of your examples: Vitamin C - I react to it NAC - I react to it That’s why I wanted to get some suggestions regarding intake of folate...
  10. CFSTheBear

    Low folate - but may not be able to supplement due to mcas. Ideas?

    Recently had a general blood test come back from my GP which identified a folate deficiency. With anything else, I’d simply buy some supplements of the vitamin/mineral and begin supplementing. Unfortunately, folic acid, folate, vitamin b9 are all contraindicated in MCAS by the SIGHI mast cell...
  11. CFSTheBear

    Need advice quite urgently

    It’s not impossible to have an allergy to them, and if you don’t have traditional allergies but have a mast cell issue you can easily be triggered by these foods. Please don’t give out advice that could potentially be dangerous to someone. Most people are fine with high histamine food, indeed...
  12. CFSTheBear

    Got to the point I am scared to try anything

    Interesting, thank you. I don’t tolerate any probiotics (mcas) so it’d be interesting to see what suggestions would be made.
  13. CFSTheBear

    Got to the point I am scared to try anything

    Hi - just dropping in here due to the mentions of ubiome - what should I look out for in a ubiome test result? Most of it just seems like nice to know information rather than actually actionable.
  14. CFSTheBear

    There will never be a cure for CFS...

    Why are you posting your pet theories on every thread going when they have 0 substance or evidence to them? To be back on topic: I think that sadly many people will have treatable areas of their particular condition but never know, due to inadequate testing and/or lack of access to thorough...
  15. CFSTheBear

    Burning / circulation issues after meal - any ideas?

    Thanks all for your responses, @Runner5 @RWP (Rest without Peace) @Richard7 @Dmitri! Much appreciated. My working theories are: some symptoms exacerbated by POTS, and blood being drawn to the stomach. Next week I am starting a drug that I hope will improve my pots, so I will have a look at...
  16. CFSTheBear

    Burning / circulation issues after meal - any ideas?

    Thanks - I did think about that, but everything has been very consistent recently, no new supplement since last year :/
  17. CFSTheBear

    Burning / circulation issues after meal - any ideas?

    Posting here because although I don't have any specific stomach symptoms, this is a post-meal thing and it's somewhat driving me up the wall. Would be greatly appreciated of any advice or insight, as the difference in my quality of life is probably one notch up on the general functionality...
  18. CFSTheBear

    Anyone have a copy of Gupta or DNRS they'ed like to sell?

    Tbh that guy comes across as very evangelical and completely unable to believe that not everyone can just recover themselves. His channel seems very dubious.
  19. CFSTheBear

    Emailing a Guardian writer

    Dawn Foster is a very good writer on disability issues, and I would be surprised if she had not heard of this issue. It may be worth pointing out some quotes from the recent parliament debate about PACE trial. However - it's probably best to nip any conspiracy theory type stuff in the bud -...
  20. CFSTheBear

    Should I start a ME/CFS clinic?

    Put your own health before any decision to set up business.
  21. CFSTheBear

    Intolerance To Multi-Vitamin/Mineral - Fight Or Flight Reaction

    To add to @Wishful's point, 'provoked heavy metal tests' have been debunked. E.g.: https://www.quackwatch.org/01QuackeryRelatedTopics/Tests/urine_toxic.html Unless you have clear reason to suspect a metal is to blame for causing your disease (being exposed to chemical poisoning, etc), but these...
  22. CFSTheBear

    Building awareness alongside the Unrest momentum

    Talk about more broad issues. To be blunt, 90% of the tweets I see regarding ME exist wholly in an echo chamber. If one uses terms like PACE, BPS, etc etc etc, then it alienates people who have no idea what we're talking about. So I would say engage on issues that have more global appeal and...
  23. CFSTheBear

    Trying to rest more as a treatment

    I would not worry as much about what I do and find something that is at least a starting point for you. The reason I say that is that your level of functioning seems far higher than mine in that you are able to go out briefly, even with symptoms. However - in terms of rest, no I just rest...
  24. CFSTheBear

    The Naviaux Protocol (Remove the Trigger / Refill the Tank / Flip the Switch)

    You may wish to notify the multidisciplinary research teams across the world of this discovery. It would probably save them a fair bit of hard work over the next decade.
  25. CFSTheBear

    Buzzfeed - A Controversial Therapy For ME Has Led To Claims Of Harassment And Pseudoscience

    A Controversial Therapy For ME Has Led To Claims Of Death Threats, Harassment, And Pseudoscience Buzzfeed journalist Tom Chivers looks into the SMILE trial and the surrounding controversy. Chivers has spoken to Phil Parker, David Tuller, Jonathan Edwards, and several patients who have gone...
  26. CFSTheBear

    Trying to rest more as a treatment

    It is unbelievably difficult to get into this, so I sympthathise. I'm on the severe end of things, and basically one day after feeling worse and worse day after day I decided I was just going to be really extreme and see if resting helped. To that end, I rested every 20 minutes for 10 minutes...
  27. CFSTheBear

    I was cured with GCMAF

    I feel like the community on the whole (not singling out anyone) can sometimes be guilty of not applying the same stringent criteria we use to criticise say, the PACE trial, to other therapies, simply because it appears to have worked for someone else, or because we've found a doctor who listens...
  28. CFSTheBear

    What is your personal theory or understanding of ME/CFS?

    Can you provide citation for any of these claims?
  29. CFSTheBear

    What is your personal theory or understanding of ME/CFS?

    Initial infection / trauma. For whatever reason, body is like "fuck that", then you're left with reeling bodily systems. I'm deliberately broad about it because I think that to be wedded so clearly to one distinct idea is foolish at this stage, because it prevents enquiry down other avenues...
  30. CFSTheBear

    The Big Vitamin D Mistake. 2017 Papadimitriou DT. J Prev Med Public Health.

    No way of telling other than to get re-tested. Vitamin D deficiency was remarkably easy to correct in my experience earlier this year. Went from deficient to 97nmol after two months of supplementing 2,000 IU a day and lying down in the garden outside. Unfortunately, had 0 effect on symptoms...