• 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. S

    📊 Poll- What would you find helpful in a meditation created especially for PEM ?

    There is literally only 1 meditation video on YouTube for PEM,yes one ( ) & it’s less than 18mins long! I’d like to see that change. (as a coping tool,not a cure) I’m requesting that some of my favourite meditation creators address this deficit (& encourage you to do the same if you can spare...
  2. W

    Poll: Do You Manage to Keep Your Home Tidy?

    A comment in another thread had me thinking: are our lifestyles a good diagnostic tool for ME? My comment was about piling stuff on other stuff, and there were several quick responses of "Me too.", so I thought a poll about tidiness (or messiness) might be fun and possibly enlightening.
  3. V

    An anonymous survey of education level

    Regardless of education, we are one smart bunch! But here's a survey anyway. You can select more than one option. You can comment here on what i've missed and I can still add it to the poll Please also see the poll on anonymous survey of profession.
  4. V

    Poll: An anonymous survey of profession (current or before illness)

    Are any of you curious what your fellow forum dwellers do/did for a living? I know I am. Sometimes people volunteer them, sometimes people say things that suggest a possible profession, other times people remain silent. Hence this survey... Some explanations of the poll Please read all the way...
  5. Hip

    POLL: ME/CFS patients who caught COVID: did this make your pre-existing ME/CFS permanently worse, or did you recover from COVID without issue?

    This is a poll for ME/CFS patients who already had ME/CFS, and then later caught COVID. The poll asks whether or not COVID permanently worsened your pre-existing ME/CFS. So for all ME/CFS patients who have caught COVID, please indicate how COVID has affected your pre-existing ME/CFS, by...
  6. GlassCannonLife

    Poll: When do you brutally honestly think there will be a cure for ME?

    I was thinking about this the other day and thought I'd post a poll. I've tried to remain optimistic the entire time I've been unwell but even with some research progress it seems like we're not really going anywhere soon.. So then I considered things like HIV/AIDS and how long it took them to...
  7. Johannes

    Poll: Beta-Caryophyllene (BCP)

    Copaiba oil and CBD (from cannabis) both contain Beta-caryophyllene. Beta-caryophyllene (BCP) has some similar properties than LDN (Low Dose Naltrexone), such as influencing immunity and normalizing functioning of ion channels of our cell membranes. I would like to know about BCP's effects on...
  8. B

    Poll: Do you have bruxism? A hypothesis on how bruxism may cause ME/CFS

    Bruxism is the involuntary clenching and grinding of teeth at night. The only way to know whether you have bruxism is for someone else who is sleeping with you to notice the noise, and possibly wake up themselves due to the noise of grinding. It is impossible for you to notice yourself since you...
  9. V

    POLL: Do you have THIS symptom? (If you click please answer either way to avoid sample bias)

    Hi. Sorry for all polls. I realize i have no idea for how many this is an issue. In fact, until recently, i didnt realize that my crazy overactive sympathetic system was a symptom of CFS. If youre not sure what this means and want to know more before answering, im sure others can explain...
  10. V

    POLL part 3. Finally, do you have any of these conditions too?

    Hopefully the last one...please consider taking the other two polls if you have not already. Those two more important... Note i added the last two options (neck, arthritis) after a couple of people took the poll)
  11. V

    POLL. Which other conditions do you have?

    This follows up on the overview poll. There will be one final poll to follow.
  12. V

    Do you have other conditions with your CFS

    Here is the full choice with the whole list I have one or more of the following in addition to CFS:: 1) autoimmune rheumatological condition (do not include fibromyalgia) ,2) cancer, 3) EDS, 4) Lyme disease or other tick borne infection, 5) MCAS, 6) MS, 7) known big chemical...
  13. 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...
  14. 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...
  15. 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...
  16. 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!
  17. ChookityPop

    How many have antiphospholipid antibodies?

    I have now tested positive 3 times with 12 weeks a part. I dont have a confirmed blood clot event or miscarriage/premature birth (as Im a man) which is required to be diagnosed with antiphospholipid syndrome. I Wonder If its possible to have a clotting event without even knowing? I have blood...
  18. 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...
  19. 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...
  20. 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...
  21. 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 -...
  22. 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...
  23. 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...
  24. 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...
  25. 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...
  26. 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...
  27. 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...
  28. 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...
  29. 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...
  30. sometexan84

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

    Which type of specialists (and/or doctors) have you found to be the most helpful in terms of ME/CFS and related symptoms? In your own personal experience. Think, expectations vs outcome. Let me know if I missed an important physician type and I'll add it. Honestly, I have not found many to...