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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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Search results

  1. dr. Arf

    Targeting mitochondria with ASHA-091

    ASHA’s CEO wife has ME CFS check these 2 tweets from Sam Shrivastava https://x.com/shrivastava_sam/status/1439608854891876357?s=61&t=sKmyvHx_RteidWxD2gpxsA https://x.com/shrivastava_sam/status/1621928604127870979?s=61&t=sKmyvHx_RteidWxD2gpxsA
  2. dr. Arf

    BCG vaccination hypothesis

    Which strain did you take ? Russian strain - Tubervac ? (common one on Indiamart)
  3. dr. Arf

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

    Before I started I did a little survey n=10 - thru Direct first-hand online contact - Almost all are Meirleir patients experience: chances better when moderate + mild (as always…) - Most did get some improvement, a minority a substantial improvement - You need to take for at least 4-6 months -...
  4. dr. Arf

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

    I’m going to copy paste text I’ve written somewhere else, as I trialed it for 4 months (and might do it again) My experience / experiment Filgotinib: - Aug 2023: 6 weeks 200 mg/day No noticeable effect (very minor side effects) Followed by a pulse protocol: - 3 consecutive days higher dosage...
  5. dr. Arf

    I cyclophosphamide

    They took it offline. Here it was. See Day 2: https://mecfs-research.org/mecfs-conference2023/ maybe because of Daratumab slide below
  6. dr. Arf

    I cyclophosphamide

    I don’t know exactly. There should be some basic IgG test In general : Cyclo depletes you B-cells Immunoglobulin (IgG) is the most common type of antibody. IgG molecules are created and released by plasma B cells. so a test can show how low your IgG is - compared to before also T-cells will be...
  7. dr. Arf

    I cyclophosphamide

    Hope things well with Cyclo Keep on pacing / not crashing as with most ME CFS patients wíth PEM drugs are less effective, if you don’t manage some kind of homeostasis (no crash & burst cycles) 1. Have you thought about testing your antibodies? Igg? - if you have access to it? (I wouldn’t know...
  8. dr. Arf

    I cyclophosphamide

    Agree. Very doubtful if you can find any doctor/clinic in countries like in the EU or US that would agree on Cyclo protocol. - But It might be possible to find a clinic/doctor in a country with more lenient laws & private clinics like Mexico. Using the CycloME Publication as a basis for...
  9. dr. Arf

    Rituximab for MCS and CFS

    Did you ever check with private clinics like the one in Mexico ? Cyclo protocol followed by stemcells ?
  10. dr. Arf

    I cyclophosphamide

    Google Translate this Norwegian article. (She also took Cyclo) https://www.tv2.no/mening_og_analyse/plutselig-ble-tonen-helt-annerledes/15073084/?fbclid=IwAR1yjTZsbd34Jhak3r8I3wChVOmOXin1bP0ZFdkkvdb2-PLYySpCXr8reA
  11. dr. Arf

    I cyclophosphamide

    @dankeen Good that you re-open a discussion thread on Cyclo. I am actually researching this at length because CycloME is one of the few ME CFS drug trials: - that has been done by researchers, who have good knowledge with (a) ME CFS, (b) Chemo-and Immuno-Therapy, (c) Research - and Fluge &...
  12. dr. Arf

    Dr Markov CBIS Theory of ME/CFS - General Discussion

    No. But I have studied and some interest. Tried BCG vaccin once And have a good connection who travels to Ukraine regularly and can transport, so decided to dive more into it.
  13. dr. Arf

    Dr Markov CBIS Theory of ME/CFS - General Discussion

    Please add me to the thread. thanks
  14. dr. Arf

    BCG vaccination hypothesis

    How is this working out? - are you close to getting your 3rd shot? Did you have side effects? - positive / negative? During the MS research The clinical response took 2 years. But I have read 2 cases of people having an almost immediate effect. I wonder how many patients are actually trying...
  15. dr. Arf

    Prusty talks about his upcoming research on a podcast

    Has anyone seen Prusty Presentation? I found it very interesting. Maybe it is a repetition of Findings and Hypothesis he has mentioned before, but for me, it was very clarifying. Specifically this slide, which IF it is a valid model of disease mechanism, is very good. – It’s the second part...
  16. dr. Arf

    Filgotinib case studies

    what is your dosage? you also have typical ME CFS symptoms? PEM?
  17. dr. Arf

    Filgotinib case studies

    Better move your updates here: - it s more complete https://forums.phoenixrising.me/threads/filgotinib-jak1-inhibitor-future-of-cfs-me-treatment.54175/page-3#post-2438511
  18. dr. Arf

    Severe ME patients have 1.7 broken copies of IDO2

    Thread Long Covid and IDO2 https://www.s4me.info/threads/prolonged-indoleamine-2-3-dioxygenase-2-activity-and-associated-cellular-stress-in-post-acute-sequelae-of-sars-cov-2-infection-2023-guo-et-al.34402/#post-485792
  19. dr. Arf

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

    Instructive JAK STAT overview
  20. dr. Arf

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

    So if half-lives of filgotinib and GS-829845 are approximately 7 and 19 hours, respective original states can be restored within a day? Or are the effects of the changed signaling further along the chain longer lasting? Another thing you might have an opinion about: R. Phair has mentioned...
  21. dr. Arf

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

    @datadragon can you try explain the gist of your post in more layman terms? Especially this one? Do you mean that if you follow the Robert Phair model, This seems does not seem the ideal drug, but it could work ? Day on/off experimenting, because you expect immediate effect? BTW “mean...
  22. dr. Arf

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

    Good 👍🏼. That sounds pretty amazing for you. Where do you estimate you are at, functioning level? 90%? So 6 months before you see it working.. Do you know the biological / medical reasons behind it? Side effects? And now you notice no more benefit? – it’s maybe because you reversed the...
  23. dr. Arf

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

    Hallo Sam, from the NLs here. Do you still take fitoglinib ? How long does it take before you notice it working? I got a prescription from DML. Still not sure if I’m going to order and try. I need to get it from a Belgium pharmacy because in the Netherlands is impossible if you don’t have a...
  24. dr. Arf

    Tofacitinib (Xeljanz)

    I am sorry @dreamydays but did you try: tocilizumab Or tofacitinib? 2 very different drugs
  25. dr. Arf

    Filgotinib case studies

    I know of one patient of KDM / DML that claims 25% improvement. He is moderate/mild, in which improvement comes easier
  26. dr. Arf

    HSCT Treatment for a Subset of ME/CFS?

    https://med.stanford.edu/news/all-news/2022/01/epstein-barr-virus-multiple-sclerosis.html
  27. dr. Arf

    Poll: Have you been helped from gabapentin or pregabalin?

    It helps me sleep b 400 mg. Before sleep. WakE up groggy, but you have deeper sleep, possibly in combo with sleeping pill.
  28. dr. Arf

    Poll for Vitamin D supplement tolerance and calcitriol levels

    I will never supplement vitamin D again, I had huge problems, after taking megadoses for 20 days.. It also took ages for the high vitamin D (1.25 and 0.25) levels to lower in my body. Professor KDM also said that for a subgroup of his patients supplementing vitamin D was creating problems.....
  29. dr. Arf

    Vitamin D sensitivity

    @aaron_c Thanks for the great advice. Already have I asked someone to fetch the supplements for me! Ps: I hate vitamin D
  30. dr. Arf

    Vitamin D sensitivity

    Daily dosage starting with 5,000 and upping to 40,000 at some point. UnFortunately I did not notice the side effects that strongly and could not relate to it until I took this high dosage, when my body was full of vitamin D :( Ps: This was following the Coimbra protocol