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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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  1. Lisa108

    Tube fed patients - does tube feeding keep us sick or even worse?

    I was referring to Dr. Jörg Schweikart, who is a member of the executive board of sunday.de . He is the editor of a (online) publishing company called Dr. Schweikart Verlag, www.drschweikart.com They host a plethora of domains for health topics and products. You'll find direct links to...
  2. Lisa108

    Tube fed patients - does tube feeding keep us sick or even worse?

    For those interested in homemade tube feeding, there is a small pediatric study (the BLEND study) which found an increased calorie requirement (+50%) to maintain BMI while on blended diet. They cite an adult study which also found increased calorie need, but for adults it was +20%. (Reasons...
  3. Lisa108

    Tube fed patients - does tube feeding keep us sick or even worse?

    Sunday.de belongs to the Schweikart group. I don't know how reliable / unreliable that is. His degree is in marketing.
  4. Lisa108

    Tube fed patients - does tube feeding keep us sick or even worse?

    Sorry for being unclear. I think that, for some people (with a functional gastro-intestinal system), homemade tube feeding might be the best diet. Especially if it is balanced, non-gmo, organic, free-range, etc... But this might not be feasible in some situations. Living alone? Partner working...
  5. Lisa108

    Tube fed patients - does tube feeding keep us sick or even worse?

    Looking a bit deeper into the scientific literature behind homemade tube feeding vs commercially produced formula. One thing stuck to me in particular (although it is so obvious in hindsight): YOU DON’T HAVE TO DO ONE OR THE OTHER EXCLUSIVELY. Instead, it is a continuum! You can mix it...
  6. Lisa108

    Tube fed patients - does tube feeding keep us sick or even worse?

    Homemade tube feeding (is that the correct english term?) seems to be widely used, especially in (but not limited to) families with chronically ill / disabled children. Reasons behind this are: better tolerance and less unwanted side-effects, better practicability, more independence. THE...
  7. Lisa108

    Prusty: U-clinic Würzburg accepts ME/CFS patients

    @nerd "Care and treatment" doesn't sound like "participating in a study" for me. May be two different aspects of what Dr. Prusty is working on (and with different facilities of the university clinic).
  8. Lisa108

    Stanford researchers may have answer to why COVID patients develop 'brain fog'

    seems to be this one: Dysregulation of brain and choroid plexus cell types in severe COVID-19 There is a press release from the University of Saarland (in German, but there is a link to the English version embedded in the second paragraph), which states that they used brain tissues of deceased...
  9. Lisa108

    ME/CFS and ATP (intracellular)

    Had mine tested in 2017 (same test as above, IMD Berlin), was 5.79 µM. ETA: Didn't match with how I felt at the time, had to stop studying and became housebound.
  10. Lisa108

    Another disease with PEM?

    Hi @Learner1, what kind of treatment has helped you?
  11. Lisa108

    Another disease with PEM?

    Since PEM is a term specifically used in ME/CFS, I'd rather look for diseases associated with "exertion intolerance" (like @xebex mentioned) or "fatigue+pain". You'll find metabolic disorders like glycogenosis, mitochondriopathies, myopathies,... See for example, Genetic test for Mendelian...
  12. Lisa108

    Dr Markov CBIS Theory of ME/CFS - General Discussion

    I like your approach, @Martin aka paused||M.E. . Let's see if we can replicate this trademarked "Nephrodysbacteriosis©" before injecting some guinea pig with autovaccines that haven't been looked at independently.
  13. Lisa108

    Dr Markov CBIS Theory of ME/CFS - General Discussion

    I think it is this one: Link ! I'm just posting this for interest, NOT recommending it !
  14. Lisa108

    Berlin Clinics

    I think you can have your blood drawn directly at IMD Berlin... Here is their email-adress: info@imd-berlin.de
  15. Lisa108

    Announcement Mary is Graduating!

    Congratulations!
  16. Lisa108

    Pathophysiology of skeletal muscle disturbances in ME/CFS (Wirth and Scheibenbogen, 2021)

    I recently had the CellTrend panel done (11 auto-antibodies) and I am negative to all of them.
  17. Lisa108

    BMJ blog: Learning from doctors with long covid

    From the link: :bang-head: Yeah, that explains a lot.
  18. Lisa108

    Resistance to antifungal shampoo

    Have you tried piroctone olamine ("octopirox")? I am using Sebamed Anti-Dandruff Shampoo since years now and it is still working. Had the same problem with "resistance" with ketoconazol-products etc. before. Don't know about the UK, but in Germany you can buy piroctone olamine powder and mix it...
  19. Lisa108

    Very agonising burning acid feeling in my mouth/cheeks. Turns out I had run out of arginine and taking citrulline is fixing it.

    Painful mouth + sores on your body + arginine... Just a wild guess: Herpes virus (re)activation due to arginine? L-Lysin should help then.
  20. Lisa108

    Alternative therapies for treating Serratia marcescens in the Sinuses

    Iranian in-vitro study showing effect of L. acidophilus ATCC 4356 and Lactobacillus plantarum ATCC 8014 against S. marcescens. Another Iranian in-vitro study : biosurfactant derived from Lactobacillus acidophilus ATCC 4356 shows effect against the biofilm of S. marcescens. And a 3rd one...
  21. Lisa108

    Alternative therapies for treating Serratia marcescens in the Sinuses

    No mention of S. marcescens, but a recent study about Lactobacilli in the sinus microbiome: Lactobacilli Have a Niche in the Human Nose
  22. Lisa108

    Alternative therapies for treating Serratia marcescens in the Sinuses

    I don't think my bf tried this one yet, thanks. But for acute infections (that could turn into another chronic episode) he uses Kalmegh capsules (Andrographis paniculata) and that works if taken early on.
  23. Lisa108

    Alternative therapies for treating Serratia marcescens in the Sinuses

    At first he made kimchi. He snorted some of the liquid (from a teaspoon) and ate a bit kimchi every day. I don't recall the duration of that period, but would say maybe a month? [Edit: 1-2 weeks of liquid snorting, around 4 weeks of eating all the home-made kimchi, according to bf.] Then he...
  24. Lisa108

    Alternative therapies for treating Serratia marcescens in the Sinuses

    My boyfriend has chronic sinusitis, tried nearly everything under the sun and even had surgery. The one thing that helps a bit is Lactobacillus sakei. It reduces the severity and the duration of each inflammatory episode. Here is a blog about L. sakei usage. I don't know if it helps against S...
  25. Lisa108

    From very severe to moderate in two months

    Yay, @Martin aka paused||M.E. , such great news! I am really happy for you! :balloons:
  26. Lisa108

    Bhupesh Prusty: "we are on a perfect path for identifying potential transferable factors in ME/CFS blood that can cause mito dysfunction..." GoFundMe

    I know that this thread is about Dr. Prusty, but I'll just add for anyone interested that according to the program there will be two talks in English: 15:10 - 15:55 (3:10 p.m. - 3:55 p.m.): Prof. Dr. Jonas Bergquist "Biomolecular aspects of ME" 16:00 - 16:45 (4:00 p.m. - 4:45 p.m.): Dr...
  27. Lisa108

    Bhupesh Prusty & Eosinophilc cation Protein

  28. Lisa108

    Bhupesh Prusty & Eosinophilc cation Protein

  29. Lisa108

    Bhupesh Prusty & Eosinophilc cation Protein

  30. Lisa108

    EBV and Sulforaphane study in NPC

    in-vitro study; sci-hub link here