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    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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poll

  1. L

    Poll: Do your symptoms improve when you fast for 1-2 days?

    I purposely picked 1-2 days as a sweet spot educated guess. Too little time fasting might not be enough time to see symptoms improve, too much time fasting might cause ME symptoms to get worse.
  2. L

    Poll: Are most ME symptoms in beginning driven by drastic impairment of glucose metabolism?

    Here's the full poll question (because I couldn't fit it): Are all ME cases and most of the symptoms, at least at onset and early disease, driven by the drastic intracellular impairment of glucose metabolism? The realm of intracellular glucose metabolism impairments suggested by the various...
  3. joejack102

    POLL: Are you a primarily mouth breather or nose breather?

    For those with POTS, Chronic Fatigue, Autonomic Dysfunction, etc... PLEASE VOTE ABOVE: Are you primarily a mouth breather or nose breather (when you breath without thinking)? The purpose of this poll is to determine if there is any correlation with breathing abnormalities and these disorders.
  4. mariovitali

    Alcohol tolerance before ME/CFS

    I searched for similar polls but couldn't find one asking about alcohol tolerance before ME/CFS. Looking forward to your responses! Some clarifications about the options : 1- I had no problems tolerating it : This means that you always had a positive mood with alcohol, you enjoyed having it...
  5. veganmua

    Please vote! Poll: Best UK ME research charity to donate to?

    I want to put collection boxes in some local shops and businesses, but I can't decide which charity to choose. I know one of the UK charities supported a proposed trial run by some of the old PACE characters, but I can't remember which one that was.
  6. Cort

    Your Dream Place for an IACFS/ME Conference: Take the Poll

    I know that it's too much for many people to go to a conference but if you were healthy enough and had the money to go where would you like it held? The IACFS/ME conference is a great place to meet patients, doctors and researchers. One issue is having an ME/CFS support group to support it -...
  7. S

    Poll. What is your NK Function LU result if you tested.

    Poll. What is your NK Function LU result if you tested. Decreased activity <7 LU Normal activity 7-125 LU Increased activity > 125 LU My result is 3 I knew it was going to be not great But I didn’t expect to see this. Found an evaluation of ME / CFIDS patients by severity. ““Those...
  8. Jesse2233

    Full Recovery of 27 Severe Mycotoxicosis Patients (O2 / FIR / Sups / Antifungal / AIET) + POLL

    Interesting study in "Toxicology and Industrial Health" from 2009. The study is unique in that a comprehensive protocol was used instead of just one intervention. This of course makes it hard to tease out key variables, but does show the potential benefit of a comprehensive approach. The...
  9. R

    Poll: Famvir BRAND NAME vs Generic

    Poll: Famvir BRAND NAME vs Generic
  10. V

    Poll on tyramine sensitivity

    Tyramine is a biogenic amine. Its similar in some ways to histamine, except broken down by MAO not DAO . Biogenic amines tend to be produced by protein as it ages (breakdown product of protein along with other amines) and sometimes by bacterial processing of undigested stuff. I should have...
  11. V

    Poll on basophils

    Curious about role of "allergies" in the etiology of CFS as others have discussed as well. In my case, was triggered by dental work to which i had immune reactions. following local reactions of hives, i developed increased basophils, though they were fleeting and not enormously high. Still, i...
  12. Jesse2233

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    I've been researching NAD+ IVs extensively in the last few days. NAD+ is of course a crucial co-factor in cellular metabolism, and one that is plausibly deficient in many ME/CFS patients. ------------------- The full NAD+ infusion protocol is 7-12 days of 1500mg 8 hour infusions. This is...
  13. Hip

    POLL: In the first 6 to 8 years of your ME/CFS, did you get slowly worse, better or remain stable?

    This poll is for ME/CFS patients who have had their illness for 6 to 8 years or longer. The poll asks whether over the first 6 to 8 years of your illness, you slowly got worse, slowly got better, or remained reasonably stable in that period? Please exclude the first 2 years of your ME/CFS...
  14. Hip

    POLL: For post-vaccination ME/CFS patients: do your tests show active viral infections?

    This poll is only for ME/CFS patients whose illness appeared immediately after vaccination. The poll asks whether post-vaccination ME/CFS patients have any chronic active herpesvirus or enterovirus infections, as viral infection-triggered ME/CFS patients often have. The purpose of this poll is...
  15. Jesse2233

    Poll: Do you have low vasopressin (ADH)? (Desmopressin / Blood volume / Symptom Reduction)

    Who has had their ADH (anti-diuretic hormone) levels checked and found them to be low? This has been discussed before but I’ve not seen a poll on it. A quick refresher... Antibodies to Arginine Vasopressin / ADH (AVPcAb) have been reported in post viral diabetes insipidus Low ADH has been...
  16. Hip

    POLL: Which standard ME/CFS treatment protocols have you tried, and which led to major improvements?

    If you want to answer the poll, please see read the info below. For a summary of the poll results, see here: This poll asks which standard ME/CFS treatment protocols have resulted in major improvements in your overall ME/CFS symptoms, which treatments have resulted in minor improvements...
  17. mattie

    Poll: Mestinon Trial

    A bit late, but I promised to report about Mestinon Trial (@echobravo) My new GP takes M.E. seriously. :thumbsup: Not only that, he allows me to trial Mestinon without going through a specialist which would be the normal route for this kind of off-label medication use. It works well for a...
  18. Jesse2233

    Careful Recumbent Exercise as Therapy for POTS vs ME/CFS - Unraveling the Contradiction + POLL

    There seems to be a huge contradiction in reported patient experiences in regards to the effectiveness of exercise for POTS vs ME/CFS patients. Many POTS patients report full or near remission with careful recumbent / water-based exercise over 3-9 months. This is even reported in post-viral...
  19. Jesse2233

    Ivabradine / Corlanor - 80% Response Rate in POTS Patients (Nov / 2017 Study) + Poll

    A recent retrospective study of 49 POTS patients showed positive results for ivabradine (a funny channel antagonist that decreases heart rate and the amount of cardiac oxygen consumption): There is also an ongoing clinical trial (RCT) for the drug's use in POTS being conducted by Dr Pam Taub...
  20. Jesse2233

    Poll: What is the next drug / procedure you’d like to see an ME/CFS clinical trial for?

    RituxME has failed, but many teatments remain to be tested. Interested to see people’s thoughts. If something isn’t listed feel free to comment below. I’ve tried to keep answer selections in the realm of feasibility (vs something risky like HSCT or infesible like CRISPR editing or organ...
  21. Jesse2233

    Poll: What can you do on a regular basis?

    I thought it would be interesting to see a more qualitative measure of the differing levels of severity represented here. By regular basis I mean do consistently without significantly worsening your condition Answer below and provide any qualifying details in comments
  22. Ravn

    POLL: How common are sun allergies/sensitivities (to light, not heat)?

    Please bear with me, this is my first attempt at creating a poll. I hope it works. There are quite a few threads here where people report various issues with sun exposure. I myself have always had polymorphic light eruption, it runs in my mother's family. Then I came across this link and it...
  23. Jesse2233

    Poll: Which symptoms do you have on a regular basis?

    Add any symptoms not listed in comments below. I've not seen a similar poll posted before, please let me know if there has been. ------------------ This poll can hopefully help us: Understand how well this forum matches Canadian Consensus diagnostic criteria Gain greater appreciation for...
  24. Hip

    POLL: Do you have tenderness at Perrin's point on your left breast (diagnostic for ME/CFS)?

    This is a poll for ME/CFS patients (you), and also optionally for a healthy control person (eg a healthy friend or family member) that you might like to recruit. The polls asks whether there is soreness or tenderness when you press your fingers or thumb into Perrin's point, a spot located on...
  25. JaimeS

    What is the course of your ME/CFS?

    Please read before responding. I'm wondering whether people who have ME/CFS are willing to check off what their 'pattern' of ME/CFS is like. For the sake of expediency, I've copied the types of multiple sclerosis. I'd love to also characterize early vs later on in terms of symptoms, but for...
  26. Jesse2233

    Tenofovir (Viread) / Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs + Tenofovir Poll

    Caveats: This is a patient's anecdotal report We do not know their level of severity We don't know their definition of cure or what other treatments they were trying It took 4 years for the full result to manifest indicating a potential coincidence with spontaneous remission ARVs have strong...
  27. Jesse2233

    Poll: Has an immunosuppressive dose of Prednisone helped you in the short term?

    Prednisone is a steroid with powerful immunosuppressant properties. It is sometimes used by rheumatologists to assess whether a patient has an autoimmune condition that may respond to other treatments (when laboratory testing and one's clinical picture are inconclusive). Note that the euphoric...
  28. Hip

    POLL: Do you still read books and newspapers now that you have ME/CFS, or do you read much less?

    This poll asks whether the amount of reading you do has changed since you developed ME/CFS: are you still reading as much as you used to when you were healthy, or do you read less now that you have ME/CFS? Here I am referring to the in-depth sort of reading, that involves getting stuck into a...
  29. Jesse2233

    Poll: How many steps do you take a day?

    On average per 24 hour period, preferably over the last month. Would be interesting to see given how many studies do not include step count as a measure
  30. Nickster

    Streptococcus -poll question who has tested positive for this

    Who has tested positive for streptococcus? My son had several bouts with it and had his tonsils removed. The surgeon said they were the largest tonsils and adenoids that he has removed (my son was only 7 years old at the time).