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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. Marc_NL

    Rituximab Trial - SMC Expert Opinion?

    @sarah darwins maybe if we call it plaXebo it works even better :)
  2. Marc_NL

    Transdermal B12 oils

    I have no allergic reaction from this oil. If I remember well others talked about it earlier in this thread though.
  3. Marc_NL

    Adenosylcobalamin

    Do you have reason to believe the 80% figure is right, I know experiments were done but nothing was published AFAIK. BTW, I am currently also using these oils
  4. Marc_NL

    Belgian newspaper Nieusblad has reported that De Meirleir is being prosecuted

    :rofl: They definitely want to paint a certain kind of picture of him. Also it doesn't seem like "a very well-researched piece of journalism" as someone earlier in this thread stated when they say that Fibromyalgia is an other word for Myalgic Encephalomyelitis.
  5. Marc_NL

    Finding and identifying deficiencies while on SMP (Methylation Protocol)

    Simplified Methylation Protocol: http://forums.phoenixrising.me/index.php?threads/revised-simplified-methylation-protocol-august-25-2012-revision.19050/
  6. Marc_NL

    Jonathan Edwards to give a seminar to a major biotech/pharmaceutical company

    Ok, you start? ;)
  7. Marc_NL

    Why does Kenny De Meirleir diagnose almost every patient with bacterial infections?

    Not sure if I understand you correctly. Do you suggest to close the clinic so that I will probably lose the improvements I have made over the last year and that I will just use the money I would normally spend on KDM to buy you an electric bike?
  8. Marc_NL

    Sign the petition and help Dutch patients: "ME is not MUPS"

    Via Google Translate...
  9. Marc_NL

    Opinions on de Meirlier

    Is there any ME specialist in any country that you would advise PWME to consult at the moment? Or do you think right now it's better to do nothing and wait a few years for Rituximab and maybe some other proven treatments?
  10. Marc_NL

    Opinions on de Meirlier

    That's more or less what I was trying to say. I don't say it's right but it's something you better be aware of before starting the treatment. It's hard to find out if this counts for "most patients", this is not my impression.
  11. Marc_NL

    Opinions on de Meirlier

    If you're looking for statistics you won't find them (like with any other doctor). Looking at anecdotes it seems that most patients improve, from a little to a lot. I am somewhere in between after one year of treatment. I have substantial improvement after years of getting worse. Some don't...
  12. Marc_NL

    winters coming ...

    Can you recommend an app in particular, if I do a search do all seem to headache / migraine related.
  13. Marc_NL

    Filgotinib (JAK1 inhibitor) future of CFS/ME treatment?

    @Jesse2233 Thanks, I just googled and found the exact same discussion ;)
  14. Marc_NL

    Filgotinib (JAK1 inhibitor) future of CFS/ME treatment?

    Do you have a link? On investment forums I saw it discussed on the official indications mentioned here: http://www.glpg.com/clinical-pipelines I've seen it discussed on ME / Lyme forums in relation to ME. You might also find @Twazzle 's post interesting when he talks about it at the end...
  15. Marc_NL

    Low-dose naltrexone (LDN) - how's it working for you?

    I once started 0.5 mg and also had this "night from hell", after that three of the best days I had in a long time. After that the effect faded away. Every time I increased the dose I felt something similar but never as strong as with the 0.5 mg I stopped after being at 4.5 mg for a while. Still...
  16. Marc_NL

    Sea salt around the world is contaminated by plastic

    @Snowdrop I hope it for you, it looks better than this piece of plastic: :devil:
  17. Marc_NL

    Interesting first appointment with Dr. KDM

    Hi, do you have any idea how these come back in your explanation of KDM's theory? As for the Lactoferrin I think he prescribed it for gut inflammation, not sure about this though.
  18. Marc_NL

    Dysbiosis Treatment with ABX, KDM

    He refers to Filgotinib: http://www.glpg.com/clinical-pipelines .
  19. Marc_NL

    Jonathan Edwards to give a seminar to a major biotech/pharmaceutical company

    There was no real context besides what @BurnA mentioned. Just a positive note between all .... what was going on :) It's in one of the closed threads.
  20. Marc_NL

    Jonathan Edwards to give a seminar to a major biotech/pharmaceutical company

    Me too, without that it will be a short thread I'm afraid ... :D
  21. Marc_NL

    Dr.Meirleir prescribes me Lyme treatment, plus other questions ...?

    @Bansaw Take care that the Rifaximin 50 mg is probably a typing error and was meant to be 550 mg I don't know if 50 mg is even available. I would ask the clinic if this is correct.
  22. Marc_NL

    Anyone Else Have Head Pressure, Foggy Vision, Difficulty Driving

    I have this too (pressure and slight pain behind my eyes), but not always. When it comes it's usually early afternoon and stays for the rest of the day. I'm always trying to figure out what triggers it. Does anyone else have this, that you get this at a specific time of the day?
  23. Marc_NL

    Twitter campain - #MEperspective - please take part

    I wonder how many of the pictures to come will look like this:
  24. Marc_NL

    Folinic Acid

    Two years ago I couldn't, now I can. I'm not sure it's because I really tolerate it better or if it's because I take an other form now. I take the adenosyl/methyl combo B12 oil from b12oils now, there are some threads about it, here's one...
  25. Marc_NL

    Folinic Acid

    Yes, I'm taking one per day. I take this form since I don't tolerate Methyl Folate. I haven't tried other brands so I can't compare. It's hard to say which symptoms it influences but I do generally feel better while taking it.
  26. Marc_NL

    Folinic Acid

    I take this one: https://nl.iherb.com/pr/source-naturals-megafolinic-800-mcg-120-tablets/7735 It says: Folate (as calcium folinate [folinic acid]) 800 mcg
  27. Marc_NL

    High secretory IgA in stool

    I have no idea, also my MD never tested it again so maybe it's not a big deal.
  28. Marc_NL

    Meirleir treatment: avelox 400mg for overgrowth in gut

    I've also read about this, it's supposed to have happened yesterday (Monday). Can't wait to hear about what was presented ...
  29. Marc_NL

    ME=not "MUS" Please be one of the 1004 signatures we need to reach 10,000

    Signed and shared :woot: Edit: Now only 1100 to go
  30. Marc_NL

    Completely eliminated my severe anxiety symptoms with three supplements!

    According to what kind of test? Did KDM diagnose you with Crohn's disease?