• Welcome to Phoenix Rising!

    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. M

    Money for Phoenix Rising and WPI: Isearchgive instructional video!

    Frank, good that you made this video. I was stupid and I searched different way and than it took longer time to get some money :-). now, i made one dollar during maybe 20 minutes - I think I will do it every day. maybe you can also write to all members of emergency action list. This need a lot...
  2. M

    Plea from Dr Bell to donate to the WPI

    Hi I just red all peoples reactions in this thread and it gave me a lot of motivation for the donation. I just gave throught WPI (I dont have facebook yet) web side 600 USD. At first, I didnt want to write it here but when I red throught this thread I got impression that maybe this information...
  3. M

    What if we could ask an online supplement store to donate 5% to us?

    I was thinking about this for a long time. I would may be propose a way how to raise some money for CFS research and also how to save some money of CFS patients who buy the supplements. So I would propose elektronic procurement (I am not sure about if I found a good word). The patients would...
  4. M

    Time for the Big Talk. How's the CAA doing?

    I also ask myself why CAA dont put some money for XMRV research. The six announced studies look interesting but if there is a chance that XMRV is the main cause of CFS, the CFS research capacities should put their effort on it , I know that the science goes sometimes slowly but I have...
  5. M

    Time for the Big Talk. How's the CAA doing?

    I saw here a lot of critic about CAA work. I would like to ask you what you think about those 6 new studies which were announced by CAA. I am not strong in medical things but the studies seemed to me logic. Do you think that they were not chosen good. Do you think that CAA doesnt do good research?
  6. M

    What are we waiting for really?

    The things are moving forward but i think too slowly - but I am often impatient. This is our problem - we have to be more visible. we have to make lobbing for our sickness. This is not a sickness with 100 people. if there are the statistics that in US are at least one milion CFS people - this is...
  7. M

    What are we waiting for really?

    I think even if XMRW doesnt turn out to be a central issue - WPI ist right that we need more funding. even if there was an improvement last months with funding (but i am not sure) its still not too much compare to other sicknesses. I think even if XMRV is not a cause this ist just a normal...
  8. M

    What are we waiting for really?

    This is the great thread. This is the question which is in my head all the time but I dont know the answer - What are we waiting for?!? I think we spend too much energy in the discussions like if XMRV is the reason of CFS and so on. I think this is the question for researchers but they dont...
  9. M

    Let's "adopt a sequence" (with funding) of an XMRV isolate!

    I did a small money collection between my friends and familie and I collected 1000 EUR, which I sent to more organisations. If I remember good I sent to WPI 200 EUR. I will do the same initiative next year.
  10. M

    higher level of Hemoglobine and Ferritine

    I just got the letter from him with the results and tretment. Its little bit complicated because I am not from Belgien. I did maybe mistake that I didnt visite my doctor in my country - I just had to take a small break form the doctors. I am also going in few weeks again to Belgien, so I will...
  11. M

    Possibly Great Grant Source: The Gates Fdn Neglected Diseases

    I also think that we could try it. We can just explain our situation and we can write that there are only few sources for the research of our sickness. Maybe we can also try to write to many others successful businessmen or other personnes who support research/humanitarian organisations - maybe...
  12. M

    higher level of Hemoglobine and Ferritine

    Hi I would like to ask you if the patient with CFS have in usually higher level of hemoglobine and ferritine. I just came from my doctor and he told me that it can signalise a problem with lungs. He says he doesnt want to scare me yet and he proposed me to do spiromethrie. But its thrue...
  13. M

    Turn ME into WE - Join the New Emergency Action List

    Frank I didntt want to be rude or strict - i only wanted to say that its just pitty that we lose a lot of possibilities and if we want to make the things faster we have to be more active - its the only chance for us. Maybe I am sometimes too impatient. How I already said - I am trying to...
  14. M

    ESME are making an announcement next week? No idea what it is.

    I now comunicated for some days with ESME - we were just talking that we could try to do a petition to support their activities. They wrote me a bit about their plans: "ESME wants to do the XMRV test in a respected lab with blood samples from 5 or more different countries in Europe. We are...
  15. M

    Turn ME into WE - Join the New Emergency Action List

    Cau I think this emergency action group could be really usefull. If there is an action, you write just an email to all members and they can react fast - its so easy. I just checked how many members has this group - the number is 172 personnes and the aim for 2011 is 1000 members. I ask myself...
  16. M

    It's International CFIDS/ME/FIBRO Awareness Day!

    I think the best way how to make a publicity of our illness on this day is: We have to go in each bigger city in all over the world on the street to be visible. We should take for 2-3 days (including 12th of May) our tents and to stay in front of the Ministry of Health/ parliament/ city...
  17. M

    My Prof De Meirleir patient experience...

    Hi I am also the patient of de Meirleir. My experiences are: I take his treatement for 4 months. I can say that I improved 30-40 %. I have cfs for about 9 years. 7 years I tried to fight with this sickness very activly - I worked, I did a lot of sports.... But after 7 years I was so tired...
  18. M

    Best CFS and/or Fibromyalgia groups to donate to?

    Thank you for your tips. Its a bit difficult to decide. We can also see how much money are missing for the research. But I have already a small good news - Some people wrote me that they decided to do the some thing. I am continuing to make a small campaign for research organisations.
  19. M

    Best CFS and/or Fibromyalgia groups to donate to?

    Which research organisations support with collecting money? Hi, I would like to give a donation to 2-3 CFS research organisations. I asked my firends and family about the supporting of CFS research and they sent me untill now aroud 1000 EUR. Now I am thinking where to send this money. I am not...
  20. M

    XMRV CFS UK study #II

    a small reaction from Dr. Vernon: http://209.85.129.132/search?q=cache:noyZ2aP1yVcJ:www.fightingfatigue.org/%3Fp%3D8153+Dr.+Venon+XMRV,+Kerr&cd=1&hl=sk&ct=clnk&gl=sk
  21. M

    Support the Whittemore Peterson Institute

    Hi, I also would like to give a donation to WPI and maybe also other CFS organisation. I asked my firends and family about the supporting of CFS research and they sent me aroud 1000 EUR and there are still some friends who want to support me but they prefere to send it directly to the...
  22. M

    the support of the research

    Hi I would like to adress you with one initiative because I think this web site visite a lot of people from many countries. I also suffer from CFS. I am already thinking for a long time, how could we (the patients) improve our situation by ourself. I am reading everywhere that the main...
  23. M

    ANECDOTAL REPORT: de Meirleir's patients POSITIVE for XMRV

    meirleir I visited de Meirleir already for twice. The last time (2 weeks ago). He took me a blood and he told me that he will do also the test for XMRV. There are still some complications if the test is already correct but he said that he will freeze my blood and if everything will be correct...