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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. Waverunner

    The good news: cause of muscle weakness ME/CFS discovered

    @pattismith Do you know of any diagnostic that would help to diagnose blood volume issues besides the standard tests (anemia, iron, B12, hematocrit etc.). I'm not sure if I remember correctly but it's not so easy to diagnose if a person does not have enough blood overall but I might be wrong...
  2. Waverunner

    Running out of treatment options. What next?

    Hi @lenora Thank you for your kind and wise reply. It's saddening to hear that despite these many and sometimes very expensive treatment options we still have not found something that works for most persons with CFS. Regarding Upadacitinib, I will try to take it but when the side effects get too...
  3. Waverunner

    Running out of treatment options. What next?

    Hi, I'm currently on Upadacitinib - only 5 days so far! - and it seems to increase fatigue significantly. Within a few hours after taking it, I get very sleepy (good when taken before going to bed) but it also increases fatigue during the daytime in my case. In the studies for RA it reduces...
  4. Waverunner

    Anti IL4/5/13 for Mast Cell Disorders and Multiple Chemical Sensitivities and ME/CFS by proxy

    Received my first shot of Dupilumap yesterday. I have atopic eczema, asthma, and lots of intolerances/allergies. I was diagnosed with eosinophilia and my total IgE counts are always increased. Dupilumab should slowly start working after one to two weeks and should reach maximum efficacy after 16...
  5. Waverunner

    Has anyone been treated with biologics (monoclonal antibodies)?

    Absolutely, the more I think about it the more frustrated I get. We don't know about the exact disease mechanism behind CFS or what is causing it but we have a lot of new biologics. These biologics work for different diseases and incorporate very different modes of action. In my eyes, if CFS has...
  6. Waverunner

    Has anyone been treated with biologics (monoclonal antibodies)?

    Good to know that they already did some studies with Etanercept. However, in my eyes, it would be very nice to have some studies with more recent drugs like Risankizumab, Brodalumab, Bimekizumab, and Ixekizumab because they have a significantly better safety profile and also seem to be more...
  7. Waverunner

    Has anyone been treated with biologics (monoclonal antibodies)?

    The reason why I ask this question is that over the last years a lot of new biologics were approved by the FDA and EMA for different indications. Once the biologic has been approved for one indication pharma companies test its efficacy for other diseases. Many newer biologics are effective for...
  8. Waverunner

    Doctor proposing Rituximab trial for autoimmunity

    Does anyone know if there are respective physicians in Europe who are able to test for this kind of autoimmunity and who do plasmapheresis?
  9. Waverunner

    Tingling hand and feet; worsening by folic acid and B12 supplements

    @Jyoti Thanks for asking, I took 600 mg 3 times a day for two days but I started to feel very sick and nauseous, so I had to stop. I also stopped the B12, folic acid, and all the other B vitamins. The tingling got better today and it only affects my feet every now and then but I'm feeling...
  10. Waverunner

    Tingling hand and feet; worsening by folic acid and B12 supplements

    OK, bought some ALA, R-form. Will give it a try.
  11. Waverunner

    Tingling hand and feet; worsening by folic acid and B12 supplements

    @Dr.Lynne and @Jyoti Thx, regarding the water issue, I drink enough high-quality water. Where I live tap water is very good and thoroughly tested. It has no chlorine whatsoever. And at work, it is a welcome task for me to refill my glass of water. I also heard that drinking half a liter at once...
  12. Waverunner

    Tingling hand and feet; worsening by folic acid and B12 supplements

    @Jyoti Same here, over the last 10 years I had many supplements on my shelf that I had to throw away because they caused issues, same for B12. I went through the methylation protocol a decade ago but it didn't help. B6 and other B vitamins seem to make it worse, especially since most supplements...
  13. Waverunner

    Tingling hand and feet; worsening by folic acid and B12 supplements

    Hi all, had some strange issues for several weeks now. I suffer from pretty bad food intolerances that seem to evolve over time. Three to four weeks ago I started to have strong dizziness, tingling hand, and feet, increased fatigue, and nausea. These symptoms last for several days but get...
  14. Waverunner

    ARA-290 / Cibinetide to treat SFN/POTS + modulate Innate Immune Response

    @mitoMAN Also have some neuropathy, can I join Discord as well?
  15. Waverunner

    Vitamin D sensitivity

    Vitamin D can make the immune system shift towards the Th2 side, where allergies and intolerances can increase.
  16. Waverunner

    Folate/Folic Acid Intolerance & MTHFR

    This is a super complicated topic for me. Whenever I take supplements with folic acid and other B vitamins, I get extreme atopic eczema and feel horrible. However, small amounts seem to be OK. I was also folate deficient but got it back into the low normal range with diet. I'm OK with this but I...
  17. Waverunner

    Game-Changing "Leaky Gut" Treatment (Larazotide Acetate) will soon be available

    How can they sell Laratozide in their supplement, when phase 3 studies are still ongoing? But nice to see that it is already available, at least in Australia.
  18. Waverunner

    Recursive ensemble feature selection provides a robust mRNA expression signature for myalgic encephalomyelitis/chronic fatigue syndrome

    I agree with your assumption that standard statistical techniques should have been implemented as benchmarks. One problem with ML is overfitting, a problem where models are very good at predicting outcomes of data they already know, but fail miserably at predicting the same outcomes with new...
  19. Waverunner

    Montelukast protects against injury of blood–brain barrier

    https://link.springer.com/article/10.1007/s10787-019-00611-7 The blood–brain barrier (BBB) is formed by tightly connected cerebrovascular endothelial cells. Injury of human brain endothelial cells can cause disruption of the BBB and severe injury to brain tissue. Signals mediated cysteinyl...
  20. Waverunner

    Another possible drug for leaky gut

    https://www.sciencedaily.com/releases/2020/09/200929173415.htm ... In the new study, the authors show tofacitinib can reverse gut leakiness in mice caused by loss of PTPN2 activity. Until now, the effects of tofacitinib on intestinal barrier function in an animal model were largely unknown...
  21. Waverunner

    Game-Changing "Leaky Gut" Treatment (Larazotide Acetate) will soon be available

    @sometexan84 Thanks for posting this. It's been a while. I hope the trial is successful and I hope that they get market access within one or two years following the trial.
  22. Waverunner

    Breaking News OMF Funded Study: COVID-19 and ME/CFS

    In 90% of cases where scientists use the word "groundbreaking", it's the opposite.
  23. Waverunner

    ME/CFS Today: A Clinical & Research Approach (Nancy Klimas' team)-Recording of webinar - May 15th, 2020

    At around 40:00 the speaker talks about how 5G could be a significant factor in COVID-19. This is where I stopped watching. Complete and utter nonsense and a perfect way to lose any scientific reputation that was left and a perfect way to enter the field of conspiracy theories. I wonder if NSU...
  24. Waverunner

    Could this be IT ? - brain inflammation

    I don't know why this supplement contains Curcuma, but Curcuma can act as strong Th2 shifter, meaning it promotes rather than reduces the allergic immune pathways. There are several studies on Pubmed, especially for diseases like ulcerative colitis and Crohn's disease, where scientists show how...
  25. Waverunner

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    I just wanted to let you know that Dr. Gilete has lots of patients right now, the number quadrupled during the last months. So when you send him MRI results it will take around 3 months to get a diagnosis. But quality is very important for him, so better this than quantity.
  26. Waverunner

    Surprising amazing response to Cinnarizine (vasodilator)

    @vision blue Thanks for your comment that is very interesting. You are not alone with this symptom. I cannot trace it back to blood drawings, however. In your case it could be a lack of blood then? I mean, the volume of blood drawings is very low normally but maybe you are so borderline that it...
  27. Waverunner

    Surprising amazing response to Cinnarizine (vasodilator)

    @GloriaDG I will buy some Cinnarizine next week, I will be in a country where you don't need a prescription. The passing out feeling is really weird. I also have POTS, where, when I stand longer periods of time, blood leaves my brain and I have to sit down otherwise I get presyncopes or...
  28. Waverunner

    Surprising amazing response to Cinnarizine (vasodilator)

    Well, this is difficult to explain. When I go to bed and I felt dizzy/light-headed for most of the day, I don't feel like falling asleep but I feel like passing out. As long as I'm awake in bed it's no problem, irrespective of duration but when I get tired I get this feeling of passing out. I...
  29. Waverunner

    Surprising amazing response to Cinnarizine (vasodilator)

    I had the same question a few weeks ago. Vasoconstrictors, as their name implies, constrict vessels and thereby increase blood pressure. So when people have problems with blood pressure, like with POTS, this is one treatment option. However, there is another side to it. A pipe with half the...
  30. Waverunner

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    @Hip A very interesting theory. I wish more researchers would look into this topic. I only found these standard approaches: https://orthoinfo.aaos.org/en/diseases--conditions/neck-sprain/