1. V

    Anyone have good - or bad - expereince with gabapentin?

    Note first: please feel free to take the poll even if you have never tried gabapentin (or have but dont' have a comment)> I have used a cream form of gapapentin but I suspect oral would be the same (if i could tolerate), so curious to hear about others experience. I found mine to be very...
  2. Thebirdman333

    A short survery of those who have had a lumbar puncture/spinal tap done

    Getting one done soon and I with very severe MECFS am worried about possible leak and needing a blood patch but most importantly worried about a permanently lowering of the baseline I have atm or experiencing permanent side effects. This is a short 30 second poll. PLEASE ONLY FILL OUT IF YOU...
  3. GlassCannonLife

    Poll: did strict pacing help you?

    I have been badly crashed for a few months now, which has meant I've been using 125-300 mg of pregnenolone to prop up my adrenal function along with a steady morning 8 mg hydrocortisone. My endocrinologist is a fan of pregnenolone as it doesn't cause adrenal suppression but helps a lot with the...
  4. GlassCannonLife

    Poll: what is your age bracket?

    I was wondering what the general distribution of age groups is here - it would be nice to also be able to know how long people have been sick at what age, but you can't make multivariate polls here. I have kept it based on decades to make it easier to look at. Thanks all!
  5. godlovesatrier

    Flu vaccine poll

    Hi all, Just a poll to see how long it takes people to recover from the flu vaccine. I'm in my 4th week and am not where I was pre flu jab yet, I was feeling pretty good the day before I got it to be honest. But the flu vaccines side effects and reduction of function isn't as severe as it was...
  6. W

    Poll: Do you think that guidelines for how to avoid worsening ME would actually be useful?

    The topic of researching prevention of ME came up on S4ME. Since we don't know how or why ME starts, we can't prevent it, so I think research into the root cause of ME should come first. Guidelines for how to prevent worsening of ME might be more useful, although since we all seem to react...
  7. bertiedog

    Poll: Are you going ahead with a Booster vaccination?

    I was wondering how many here are going ahead with the booster vaccination currently being recommended for those in high risk groups. It feels to me at the moment here in the UK that there is tremendous pressure for us to go ahead. As someone who doesn't appear to have done well post the...
  8. sometexan84

    Have these stomach acid boosters helped you? (POLL)

    Have you ever specifically tried some of the below items, (which happen to be things that can boost stomach acid)? Did you notice any symptom improvement? Stomach Acid Boosters (for poll) Ginger or ginger tea Apple Cider Vinegar – dilute in water, and drink before meal Fermented Vegetables -...
  9. Martin aka paused||M.E.

    Poll: Do you have Myalgic Encephalomyelitis (ICC)

    The ICC is the most narrow diagnostic criteria to differentiate ME from other fatiguing illnesses. I would like to get an overview how many here have ME in accordance to the ICC. You can find the criteria in the file attached. Don't cheat :-) More information here...
  10. godlovesatrier

    Poll - very high prolactin

    I've come across some old threads where people mention they have very high prolactin. Mines been high for 6 weeks two consequitive sets of tests. I'm to be re tested again in 6 weeks. GPs in the UK don't test prolactin levels as part of any standard or thorough tests I've seen (I've seen about 6...
  11. Pyrrhus

    Poll: Have you ever experienced complete paralysis of a part of your body?

    Have you ever experienced complete paralysis of a part of your body? Multiple selections are allowed. Please feel free to explain details in a post. By "complete paralysis", I am not referring to sleep paralysis or to any extreme weakness that prevents movement. Related discussion...
  12. MartinK

    Do sore throat / tonsil ulcers make you worse - PEM/inflammation?

    I realized one thing and I'm very interested. Before my ME/CFS started, I suffered also a lot from various upper respiratory illnesses - sore throat / tonsil ulcers / influenza. It often met me even when I was mild / moderate, not so much now, probably because Im at home at constant...
  13. Martin aka paused||M.E.

    Twitter Survey on infectious onset

    Hey folks, I did a (not representative) Twitter survey. I wanted to get an overview on how many cases of ME had an (symptomatic) infectious onset. These are the results, I thought I share them with you (yes I know that the results have their limitations) 365/500 had a known infectious onset...
  14. W

    Poll: Experimentation: Win/Lose/Draw?

    As a follow-up to the True Confessions thread, how has experimentation with treatments worked for you? It's worked really well for me, but some people have regretted some experiments, so I'm wondering how strongly we (or at least I) should recommend it. Maybe there are some categories of...
  15. MartinK

    majority or minority ME/CFS worsens only physical activity (not mental) (POLL)

    I'm very interested in this! In last years I wrote with many ME/CFS patients, or read posts here, on reddit, FB groups...whatever. After that long time, I feel like one of the few who have long-term severe and mooore seveve ME/CFS or PEM/crashes with no worsening mental activity...no brain fog...
  16. sometexan84

    Which type of doctor have you found to be the LEAST helpful? (POLL)

    Which type of specialists (and/or doctors) have you found to be the least helpful in terms of ME/CFS and related symptoms? Who are the worst... in your own personal experience. Think, expectations vs outcome. Let me know if I missed an important physician type and I'll add it. As for me, the...
  17. TinaYesen

    Poll: Have you been diagnosed with POTS/POSH, NMH, or OH with your ME?

    I'm interested to know how common these conditions are being diagnosed with ME. I'm also interested to know if doctors' diagnoses are falling in line with current research indicating POSH and POTS occur together.
  18. 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...
  19. 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...
  20. 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...
  21. 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...
  22. 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!
  23. 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...
  24. 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...
  25. 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,
  26. 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.
  27. 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...
  28. 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...
  29. V

    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...
  30. 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...