• 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. B

    What do You think is your most disabling symptom?

    Absolutely brain fog. I've seen major improvements since I started taking L-5-MTHF, but I still have a ways to go before I'm properly 'fixed'. It was especially notable when I had to cut back on my dosage due to problems in the company that supplied it. I was on 1/8th of a regular dose for...
  2. B

    Surveys on MTHFR mutations among the population?

    A month or so ago I confirmed that I have MTHFR mutations. Since then I have been taking L-5-MTHF and my health has begun to improve. This got me thinking about the prevalence of these mutations throughout not just CFS suffers, but also the population in general. Just how prevalent is MTHFR...
  3. B

    The perfect piece of art to convey what CFS feels like would be...

    A videogame that crosses the difficulty and gameplay of Dark Souls with the nonsensical, existential despair of a Franz Kafka novel. Seriously though I just finished killing the giant spider-demon-witch-lady in Dark Souls. Felt fantastic. Playing a tanky character and it feels amazing to be...
  4. B

    The ultimate poll about CFS/ME diet

    The options in your poll seem a little binary. I noticed slight improvements when I went paleo and then some more improvements when I went ketogenic, but they weren't enough to really push me into health. That being said I am definitely grateful for the benefits they gave me and they definitely...
  5. B

    Low dose Naltrexone

    I got my hands on some naltrexone but i'm unsure about how to get the microdoses right. The 50mg tablet are tiny as is, trying to cut them into 10ths or 12ths seems almost impossible. What is a good way of breaking it down into powder, how should I store it once I have reduced and what should I...
  6. CFS recovery log 9/10/15 - 8/11/15

    CFS recovery log 9/10/15 - 8/11/15

    There seems to be a pattern with these recovery logs. Every time I get close to the end of the 30 days, I come down with a cold. This is unfortunate, as it colors what I write here. Believe me, I really wanted to say something else this time, but as per usual, life got in the way. I started...
  7. B

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

    I would settle for just a transcript of the speech tbh.
  8. B

    Dr James Coyne tackles the PACE follow-up paper

    Damn, James is on fire. I really hope a debate happens. Probably won't, but it would be so much fun to vicariously verbally bitch slap those supporting PACE.
  9. B

    Dr. Collins wants to mend fences - my call with him

    Shouldn't the title be the NIH wants to mend fences? Regardless, awesome news.
  10. B

    SIBO, low stomach acid

    I found Swedish herbal bitters to be more effective then betaine. Betaine temporally increases acid, whereas Swedish bitters leads to a more permanent solution. (Basically you don't have to take bitters before every meal) But if you're just trying to kill off stomach overgrowth, I don't think...
  11. B

    A new do-it-yourself, randomized, double-blind, placebo-controlled, MITOQ trial

    While I think it's awesome that someone is doing this, I'm skeptical of their claims about the efficacy of the product. I couldn't find anything telling me what they put into it. I'm confident it will produce positive results, but I just hope they don't try and push their product too heavily...
  12. B

    What research would you do if you had £1M?

    Flesh out a proper treatment protocol that centers around lowering oxidative stress, reducing autoimmune issues and increasing mitochondrial function, along with normalizing the gut. I think that would be a fantastic step in creating a standardized protocol that could be a first line of defense...
  13. B

    CFS recovery log 8/9/15 - 8/10/15

    Unfortunately I have made little progress since last time I posted. I came down with an utterly awful cold that rendered me incapable for several weeks (at least 19 days). During this time I was coughing up large amounts of fantastically colored mucus, dealing with the worst sore throat and...
  14. B

    Latest model on what CFS is, and implication for treatment

    I recently found out that low stomach acid (or Hypochlorhydria) is common among CFS sufferers, people with celiac or gluten intolerance and other illnesses. (Keep in mind that the only source I could find for it being common among CFS sufferers was on Sarah Myhill's site, so take it with a grain...
  15. B

    Intermittent fasting (5/2 diet) and anti-inflammatory effects: likely benefits for ME?

    Adding my two cents to the topic. A couple months ago I noticed my symptoms would occasionally lift and I would become noticeably more 'alert' for periods of time. This coincided with me going on a ketogenic diet, along with implementing intermittent fasting. On waking I would feel pretty good...
  16. B

    Comment by 'bsw' in 'CFS Recovery Log 7-8-15 to 6-9-15 - Improving the quality of my suffering'

    I really got into the methylation stuff 3-4 months ago and was throwing supps at my body like crazy. I think they helped, but I also think I reached a plateau in regards to recovery through them. I think the importance of oxidative stress in regards to methylation is underrated. While I don't...
  17. CFS Recovery Log 7-8-15 to 6-9-15 - Improving the quality of my suffering

    CFS Recovery Log 7-8-15 to 6-9-15 - Improving the quality of my suffering

    Jeez, little late with this one. About 35 days ago I started the ketogenic diet. This lead to a pleasant increase in overall energy and allowed me to get more stuff done in my life. While this increase in energy was fantastic, it was usually followed by a crash a couple days later. These crashes...
  18. B

    Miracle cures. Diets. Supplements. Cleanse. Detox. Evidence?

    While I think anyone promoting a 'miracle' cure for CFS is automatically full of shit (unless the cure is a long-term, intensive, well-thought out, multi-pronged attack on the underlying causes), eating the standard American diet is really stupid for anyone with compromised health, no matter...
  19. B

    Lack of chatter about the Ketogenic Diet

    Looking at my notes it took me about 2 weeks to properly adapt to keto, BUT I wasn't taking in enough electrolytes. If you find yourself after a few days exhausted on a keto diet it's probably electrolytes. I now drink homemade soup to manage my electrolyte needs and its been working out pretty...
  20. B

    Lack of chatter about the Ketogenic Diet

    I've been on the ketogenic diet for the last 4-5 weeks and it has, by far been the biggest game changer when it comes to CFS. It has probably tripled / quadrupled my energy (of course, that means a lot less when you start from next to nothing), helped cleared up my brain fog and allowed me to...
  21. B

    Overview of methylation

    Wow I completely missed the wikipedia page on methylation. My bad. Thanks for the goldmine. Think I've gathered all the sources I'll need.
  22. B

    Comment by 'bsw' in 'Myalgic Encephalomyelitis: a multi-system disorder'

    This is awesome, but you've gotta link the references at the bottom to corresponding bits in the text. I'd rather not go hunting through hundreds of pages of annoying scientific articles just to find a quote discrediting GET.
  23. B

    Overview of methylation

    I'm trying to write up a summary for chronic fatigue syndrome for some people and can't seem to find much information on the methylation cycle. Rich's summary of the cycle is nice, but I would like a hard, indepth explanation of the subject. My searches for methylation have led me to nice little...
  24. B

    Comment by 'bsw' in 'Things we think we know...but what if............'

    As someone who (hopefuly) is on the way out of dealing with this, I feel that I've kinda undergone some sort of 'coming-of-age ritual' or 'rebirth in the world'. On a good day my personality is quite different then what it once was and I have this seemingly rock-solid confidence in myself that...
  25. Methylation / Ketogenic Recovery Log 9/7/15 - 7/8/15

    Methylation / Ketogenic Recovery Log 9/7/15 - 7/8/15

    If you're a observant reader of my updates (highly unlikely), you'll have noticed this entry has a change in the title. I have incorprated the ketogenic diet into my life as another method of recovery from CFS. So far I have noticed increases in important areas, such as energy and concentration...
  26. B

    methylation recovery log 7/6/15 - 7/7/15

    That time of the month again PR! Unfortunately I have no fancy graphs to show you guys this time as my energy showed little change throughout the 30 month period. I am not discouraged by the lack of progress however as I was sick with the common cold for most of the time. (I put 'sick' in the...
  27. B

    methylation recovery log 7/6/15 - 7/7/15

    That time of the month again PR! Unfortunately I have no fancy graphs to show you guys this time as my energy showed little change throughout the 30 month period. I am not discouraged by the lack of progress however as I was sick with the common cold for most of the time. (I put 'sick' in the...
  28. B

    Question about types of folate

    I have about a weeks worth of Solgar folate left and it takes 7-15 days for more to arrive (I have to order it as I can't find any methylfolate in stores where I live). I do however have FolaPro by metagenics. Each FolaPro tablet contains 800mcg of L-5-Methyltertrahydrofolate. Can I take this in...
  29. Methylation recovery log 7/5/15 to 7/6/15

    Methylation recovery log 7/5/15 to 7/6/15

    Note: I did not do an update for the 30 days between 8/4/15 and 7/5/15 due to illness and lack of progress. You did not miss out on much. Futhermore I have come down with an awful cold recently that is effecting me. Despite this I remain positive, due to the changes I have undergone over the...