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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. Notjustfatigue

    New possible diagnostic method for CFS or ME.

    Dear mates, I want to inform about a crowfunding campaign for a study about etiopathogenesis of ME/CFS that could lead to set potencial biomarkers for the disease. Link...
  2. Notjustfatigue

    Crowfunding for a study about etiopathogenesis and try to set potencial biomarkers

    Dear mates, I want to inform about a crowfunding campaign for a study about etiopathogenesis of ME/CFS that could lead to set potencial biomarkers for the disease. The following is based in our mate @Manuel work...
    • Notjustfatigue
    • Thread
    • crowfunding etiopathogenesis infections inmunodeficiency intracellular infection potential biomarkers study
    • Replies: 1
    • Forum: Fundraising
  3. Notjustfatigue

    Spanish Petition : Remove ME guidelines

    Thank so much mate!!!! I will help as much as i can when i recover from the crash unavoidable after a plane travel tomorrow to see an ME/CFS Doc. There are already some Spanish specialists who have already backed it and a formulary specially for them...
  4. Notjustfatigue

    Emerge Australia ME/CFS International Research Symposium March 12-15, 2019

    Do subtitles work for someone??? I activate them but don´t appear in screen when i have it not full-screened (it did below in a textbox but so much asynchronized) , but when i put video onto full-screen mode, not subtitles at all). I use Chrome browser. Thanks!!
  5. Notjustfatigue

    uBiome results

    When did you order it and when did you recieved the kit?. I talked to Explorer Support Team and they told me they don't have a specific timeframe for ExplorerPlus, so it was available to preorder but they did not send any kits and i wouldn´t be able to do it since it was "officialy" released...
  6. Notjustfatigue

    uBiome results

    Any update about ExplorerPlus??. I got in contact with them and, at first, Ubiome "standar" support team does said me that it was already available, but then, after asking some more technical issues, they answered me from Explorer Support Team (this is another work group) and explained me they...
  7. Notjustfatigue

    With these analytical markers you can show your doctors the cause of your CFS/ME.

    Very interesting!! :thumbsup: Thx so much @Manuel. Hugs :hug:
  8. Notjustfatigue

    Faecal Transplant in UK

    Thank you so much, @Hip. I will do for sure!!!
  9. Notjustfatigue

    What labs to do before starting IVIG/Rituximab?

    Anyone knows if it is a must to be positive in those Cell Trend antibodies to be a good candidate for having succesfull with IViG or it may work anyway being negative?. I mean if it would be worth to give them a try blind (without doing Cell Trend antibodies) or even having done the analytics...
  10. Notjustfatigue

    Faecal Transplant in UK

    These days I am so foggy and english is my second language (and a little bit worse every time as well as the first is), so I have not been able to read the article or look for more information about the mucoprotectans that you suggest. Any important side effects? Have you ever tried any of...
  11. Notjustfatigue

    Faecal Transplant in UK

    @kangaSue if i not wrong it depends of your microbiome perfil and the ratio bifidobacterium firmicutes that you would have. Any way i would read the paper to see what interesting thing are in it (that it should be in a healthy adult about 2.1:1 firmicutes bifidobacterium ratio). Anyway i would...
  12. Notjustfatigue

    Faecal Transplant in UK

    That sounds great for the diarrea and some IBS symptoms, but, do you think it could work at any way in others like PEM, cognitive problems, extreme fatigue or other CFS sumptoms? Hug :hug:
  13. Notjustfatigue

    Faecal Transplant in UK

    Please, if you would able to do it i will appreciate a lot, because its so different to spend 6000€ to be fully recover during two moths and recover all my previous life (especially snowboarding, having social life, going to dance, etc), that have just a little improvement. My state now is...
  14. Notjustfatigue

    Faecal Transplant in UK

    If i am not wrong i think one of both (now i can´t remember if it was Taymount or Dove), let you carry some samples to do some FMT at home. If it was possible at least to take to Spain for making two a weeks for two months (8 samples) it would be so thinkable about. I am too bad and can´t afford...
  15. Notjustfatigue

    Faecal Transplant in UK

    @kangaSue, thank you so much for your quick and diligent answers. One thing. Then, do think this have a good risk/reward ratio or not. Will you test it yourself. Thanks very much for the link of the another post. @Hip recopilation had very good apparience, so i feel like i would find very...
  16. Notjustfatigue

    Faecal Transplant in UK

    @kangaSue So thanks for the links. In any time i have (with a little more cognitive capacities than a lettuce :lol:) i will read it with calm. They seem interestant. Always thanks form go out a limb with this thread and give us a so positive vision of the situation. Do you know any one who had...
  17. Notjustfatigue

    Faecal Transplant in UK

    @kangaSue do you mean that we have 25% chance of recovery and 25% of some improvement. If is like that is more than thinkable. I obviously if stay recover for one year (or with a big improvement) i will do another cycle of 10 FMT nearly without thinking. Thank you so much. Hugs :hug:
  18. Notjustfatigue

    Faecal Transplant in UK

    For real i will do. Thank you for you advice. Hugs :hug:
  19. Notjustfatigue

    Faecal Transplant in UK

    I more or less have a similar idea. I count with if that works, i should reply at least next year (and probably so many more). I have UK very more near (less expensive travel) and would share at home and taxis with my other two mates, so it would be so expensive. And thinking that some moths i...
  20. Notjustfatigue

    Faecal Transplant in UK

    They, at least, says that in their website: "TESTING PROCESS The Taymount banks implants taken from our regularly screened donors, who have undergone a full detailed list of laboratory tests every 3 months. All donors are obliged to follow a high-nutrient, probiotic and pre-biotic rich diet...
  21. Notjustfatigue

    Faecal Transplant in UK

    Anyone who had any reference (direct or from another third person) from one of those clinic Taymount clinic (https://taymount.com - with twitter @TaymountClinic) or at the Dove clinic (https://www.doveclinic.com/fmt-faecal-microbiome-transplants with twitter https://twitter.com/DoveClinic)...
  22. Notjustfatigue

    Faecal Transplant in UK

    @kangaSue Do you then think they could be a good stuff por ME patients??? We will do it in one of de clinics mention above, booth in London, the Taymount clinic (https://taymount.com) or the Dove clinic (https://www.doveclinic.com/fmt-faecal-microbiome-transplants). We would have to do one...
  23. Notjustfatigue

    Faecal Transplant in UK

    @JES Thank you for your reply. We are a group. I don´t used to tolerate bad them, but i had a lot for try. I should also ask my other mates. Thanks again. Hugs:hug:
  24. Notjustfatigue

    Faecal Transplant in UK

    So you mainly thinks there are more risk to inmunocompromised patientes, than benefit. That good stuff for at least think it so much before taking any decision. I was hopefull about Borody results and lot of stuff you can read in many ways..:aghhh::aghhh: No positive references, especially from...
  25. Notjustfatigue

    Faecal Transplant in UK

    @Hip @JaimeS Thank you for your quick reply. I "don´t matter" (of course i do, but the economical one is not the most important stuff) spending 5000-6000€ for a near one year relax (having in consideration that i used to spend just a little less in supplements). @Santino @SB_1108 @Tabitha What...
  26. Notjustfatigue

    Faecal Transplant in UK

    Up!!! Please any reply!! @JaimeS @Hip??? Anyone who can help us in any way?
  27. Notjustfatigue

    Faecal Transplant in UK

    @Lassesen????
  28. Notjustfatigue

    Faecal Transplant in UK

    how are you mates??? We are 3 patients from Spain who are thinking about getting fecal transplants. At first, we would do it in London at the Taymount clinic (https://taymount.com) or at the Dove clinic (https://www.doveclinic.com/fmt-faecal-microbiome-transplants). We all have CFS and several...
  29. Notjustfatigue

    This treatment can probably cure us.

    Thanks for the info, mate!!! Without any doubt are very good news!!!! I also believe it will for sure open a quite good therapy option, especially for those with a big pathogenic factor implicated and/or autoinmune issues. As Gemini, also would like to read Davis and Unutmaz opinion about...
  30. Notjustfatigue

    Article: Chronic Fatigue Syndrome (CFS) associated with Epstein-Barr virus infection.

    Very good work!!! Congratulations!!! :thumbsup: I read the summary in English and Spanish, and being Spanish my mother tongue and not being completely bilingual (even much less since I got sick), I think it is completely understandable in English. I am more or less used to reading technical...