1. Woof!

    Take the poll: What are YOUR triggers?

    Hi all! Here's the poll I've been promising. The reasons for doing this are two-fold: (1) to share information about triggers, and (2) to help members track down their individual triggers (the better to avoid them). What I'm looking for are: (A) triggers that DIRECTLY make your ME/CFS worse...
  2. Art Vandelay

    Poll: do you get symptoms similar to an "MS Hug"?

    I have spoken to many ME/CFS patients who seem to have symptoms which mimic an "MS Hug". This appears to be one definition: My interest in this has been sparked by my own odd symptoms which seem to resemble an MS Hug. I also recalled this thread from @Sasha who described it as "feeling like...
  3. nerd

    Poll: Your Original Antigenic Sin (Early Childhood Infections)

    In case you aren't aware of the concept of the Original Antigenic Sin, it's based on evidence how the immune system shapes based on the first childhood infections and that this dominates our lifelong immunity. So there isn't really a scientific consensus yet if this is something positive or...
  4. nerd

    Poll: Mast cell and histamine degradation genotypes

    I know that there has been one poll on how frequently MCAS co-exists with CFS/ME. But I could imagine that some of the negative cases just are not perceived as MCAS when, in fact, the mast cells might still be dysregulated asymptomatically. This is why I would prefer to describe the condition...
  5. H

    POLL: Have you been tested for Mycotoxins?

    This directly follows on from this thread which discusses the results of Dr Brewer's study, which showed that 93% of CFS sufferers in his clinic had high levels of mycotoxins in their body, compared to 0% for a healthy control group. I am interested as to whether these results are replicated...
  6. Flnn

    Poll: Antibiotics before ME/CFS?

    Curious to know if people had antibiotics before ME/CFS! Does not matter if they were given when you were a child or shortly before ME/CFS! Thank you!
  7. B

    Poll: Do you have a partially empty sella on your brain MRI?

    You might already know that idiopathic intracranial hypertension (IIH) could be a major cause of ME/CFS in at least one large segment of the ME/CFS afflicted population. This paper by Dr. Higgins is one of the major sources of this hypothesis: https://pubmed.ncbi.nlm.nih.gov/28735654/ One of...
  8. S

    Informal poll on Covid-19 vaccine responses

    Hello, I'm taking an informal poll on the experience of ME-CFS patients who have gotten any of the Covid-19 vaccines. Essentially, I'm interested in what vaccine you got and what your reaction was. I do not want to start a debate on whether one should or should not get a vaccine. I merely...
  9. godlovesatrier

    Poll: People active on Herpes Veridai Protocol

    Quick poll to see who's participating in the protocol and roughly what diagnosis people have: This is the protocol for those unsure: https://forums.phoenixrising.me/threads/me-cfs-research-herpes-autoimmune-spectrum-disorder.83371/ Thanks,
  10. sometexan84

    Have you tested for Enterovirus B? (+which lab, +results) POLL

    Can Choose Multiple Answers For the purposes of this poll, I would like to define "abnormal" results as a titer of 1:80 or higher.
  11. nerd

    POLL: CC allele in rs9557195

    Considering the causal significance of herpes-viral infections, especially EBV, I'd be interested in the prevalence of the CC allele in CFS/ME patients (10.1111/bph.15395). This SNP determines the EBI 2 expression on lymphocytes and EBI 2 is a key pathogenic post-viral driver, though it...
  12. B

    POLL: Has anyone recovered with the Gupta Program?

    Has anyone recovered with the Gupta Program? I’ve been doing it for a few months but I haven’t seen any improvements so I’m thinking of giving up. After six months I can request a refund which is good. Has anyone had success with it though? There are LOADS of testimonials on YouTube and on...
  13. vision blue

    POLL 3 What symptoms did you get after Covid-19 vaccination?

    Because those with CFS may have different symptoms either qualitatively or quantitatively than the rest of the world, this survey may help. Please note one is limited since it is only a one question poll and the number of choices are capped as well. Choices come from the CDC list of possible...
  14. nerd

    POLL: How common are B Vitamin deficiencies?

    Given the assumption that CFS/ME is a hypermetabolic condition, I'm trying to found the hypothesis that Vitamin B deficiencies are amplified by the hypermetabolic state and that the normal recommended intake of these Vitamins doesn't apply to CFS/ME. I'm particularly interested in how common...
  15. Hoosierfans

    POLL: Low Dose Abilify Tolerance / Poop Out

    For those who have taken low dose Abilify and benefitted, please indicate whether Abilify has continued to work for you or whether you have experienced tolerance / poop out. There is a separate poll for whether Abilify improved or didn’t improve your ME / CFS symptoms.
  16. Hoosierfans

    POLL: Low Dose Abilify

    Here is a poll for those people who have tried low dose Abilify. Another poll will follow to gauge Abilify tolerance / “poop out”. For purposes of this poll, please utilize the ME / CFS scale of very severe, severe, moderate, mild or remission. So, a 1 level improvement would be moving from...
  17. vision blue

    Poll #2: Compare second vaccine dose to first (and some extra)

    Just setting this up because of the poster who was hoping to get info on reactions to second dose compared to first. Others may have same question. Please check off all that applies. (Note I am hoping that "publicly visible" means only the aggregate is visible. If that is not true, i will edit...
  18. vision blue

    POLL #1: 30 days post vaccine

    Hi folks- You can check off as many as you like - more than one should apply to you - and you can change your answers as often as needed. Note there are many items on the list including co-existent AI conditions and age questions I sure hope the poll creator does NOT randomize the options...
  19. pattismith

    POLL: Your Anion Gap

    Too high anion gap means Acidosis and can happen if you have for example lactic acidosis Too low anion gap is often related to low Albumine Two ways for Anion Gap calculation, the usual formula is Na - Cl - HCO3 units are mmol/l or mEq/l Normal is 8 to 16 (or 10 to 20 if K include) HIGH...
  20. sometexan84

    Did your symptoms begin after Glucocorticoid treatment? (POLL)

    Either by injection or oral. (or nasal spray)
  21. gbells

    Battle of the NAD boosters poll (NMN, NAD+,NR)

    Which NAD booster works the best? Nicinotinamide riboside (NR), Nicotinic mononucleotide (NMN) or NAD+? Patients report a 50% boost in baseline energy using NAD boosters with D-ribose. They work by increasing your energy production capacity for metabolism. Nicotinamide Riboside (NR) vs...
  22. gbells

    ME Activity Level Over the Years Poll

    To answer this poll please find the selection that corresponds to how long you have ME and where your current highest sustainable activity level is and select it. Thank you.
  23. sometexan84

    How sexually active were you (in the 1-3 year span) prior to ME/CFS? POLL

    I know this is a touchy subject. Please don't feel obligated to answer if it makes you uncomfortable. There are numerous infections that can be transmitted sexually, so I think this is a fair poll that could possibly correlate, considering multiple infections are often seen in ME/CFS. (It...
  24. Pyrrhus

    Is social media helpful or hurtful for people with ME?

    I'm curious about people's opinions of social media, from an ME perspective! Vote for as many options as you like. Feel free to post your experiences or perspectives in a post below!
  25. Muon

    Poll: Small intestinal bacterial overgrowth (SIBO)

    The question is based on this setup: Solution: Lactulose. Gases: Hydrogen and Methane. If you have only used one of these gases then the first two options still apply. However when using different gases and/or solution(s) then one have to pick the 'elaborate in the comments' option. Positive...
  26. Davsey27

    Ldn poll

    What dose are you on? What benefits have you seen? How long did it take to start working? How would you rate your energy on a 1-10 scale before and after? Thank you
  27. sometexan84

    Too many ME/CFS hypotheses! Where do you lean? (POLL)

    Overwhelmed by all of the hypotheses out there? Well so am I. IDO Metabolic Trap (Robert Phair) Inhibition of IDO1 creates the possibility of metabolic bistability in cells expressing the kynurenine pathway Vagus Nerve Hypothesis (Michael VanElzakker) In some individuals, the symptoms of...
  28. C

    Poll: Has anyone lost their ability to enjoy music

    One of the first things I noticed when I was getting sick is that I don't enjoy listening to music as much as I did back when I was healthy. Music was actually one of the most important parts of my life. I liked playing DJ sets and worked on music production. Trance was the genre I enjoyed most...
  29. W

    Poll: Have You Regretted any Reasonable Experimental Treatments?

    Trying lots of different potential treatments increases our chances of finding something that works. The goal of this poll is to get an idea of the possible downsides, at least for reasonable treatments that don't have known high risks of serious side-effects. Please don't include known...
  30. Sarah94

    POLL: your experiences with Vitamin B3 (also known as niacin, niacinamide, nicotinamide)

    Hello! My doc wants me to increase my Vitamin B3 supplementation... I am rather apprehensive about this as I've seen quite a few negative reports about B3 on here. I thought I'd make a poll to see how common those negative experiences actually are. Thanks, Sarah