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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. B

    Will the CAA support a name change to ME/CFS?

    Instead of starting a post asking if the CAA will support a name change why not just aske them. And does it really matter? They are not the ones who get to decide what our illness is called. What they decide seems totally irrelevant if the government is saying it is ME/CFS now. What choice...
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    Homeopathy

    Placebo There is no such thing as a placebo effect in babies and animals because they don't even understand the concept of what a medicination is. Can you site( provide links) to any published studies where homeopathy worked in babies? I would be interested in viewing them and reviewing...
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    The CAA: Defense for the Sake of Defense

    Thanks for the reply I thought you guys ended your work with Sheridan years ago because it was not effective. Did the over 100,000 for 2009 all go to B&D for Lobbying? When did you hire B&D? That still seems like a lot for travel to me. Do you guys stay at the super 8's use AAA discounts...
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    The CAA: Defense for the Sake of Defense

    breakdown of some spending 990 Jennifer, on your 990 form from 2009 it says the total expense for occupancy is $63, 810. Is this not high amount for a modest office space? I know some places where you could buy a house for that amount. Other items that strike me as a lot for a lean...
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    Sleep pattern and symptoms

    Thats me too I find I feel my best between 7pm and 2 am. I thinkit's becauuse the world puts no demands on me then. I also just feel too wired yet tired. But my body does not want to get up in the morning so to sleep till 10 or 11 feels like what my CFS wants of me so I feel best when I can...
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    The CAA: Defense for the Sake of Defense

    Can we start a new ME/CFS org and put Joseph Chang in charge? Most of what the CFIDS assocition does benefits the Cfids Association. Yes they they have funded a few good research projects with our money. But it seems like the employees of the CFIDS association are living way too well off of...
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    Where does the CAA

    I look at it all thanks. I'm having a bad relapse and in bed most of the day. But when I have the energy will look.:Retro smile:
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    NIH Announcement (Rumor?) 10/8

    They Probably just figure they better announce they are doing something to stop us from calling, e-mailing and faxing so much. Hopefully it would be something meaningful and not another stall tactic , smokescreen type thing.
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    Advocacy - Is it possible to have a real discussion about on the web?

    easier to nominate Tina This may have already been talked about in this thread so forgive me if it has I'm too tired right now to go back and read. But if there is any way in future contests to be able to nominate or vote for P.A.N.D.O.R.A. without writing out the full name or using the...
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    Remember the Leaked Mikovits Abstract Last April?

    word to explain the 95% --cohort--
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    Time for Action - easy daily advocacy campaign

    Would it make sense to contact Sebelious too. Aren't the CFSAC recommendations given to her underlings? She seems just as guilt for us being ignored if not more so than Collins. This is an awesome idea. I started my daily e-mails today.
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    work advice

    My advice would be don't tell them in advance. Sign up for all the disability policies you can if offered trough work or independently. If you find you are unable to work because of your CFS you will have the disability policies as a safety net. No employers want to hear you have an...
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    Where does the CAA

    The CFIDS The provider education program seems to expouse the CDC's views on CFS. Thanks for nothing on that. As far as the association communicating extensively with the CFS community I don't know how that is happening when as the CFIDS association has educated everyone there are 1-4...
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    Advocacy - Is it possible to have a real discussion about on the web?

    I think we need an advocacy group which does not accept money from the CDC or NIH. These 2 groups have done more to abuse and nelect us over the past 25 years than is possibly imaginable. There should be a clear line between the advocacy group and the govermnent so the group can be an...
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    Help for Justine Roach, severe ME sufferer

    just read all of the thread. So happy she is going home.:Retro smile:
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    Help for Justine Roach, severe ME sufferer

    Didn't Sophia Mirza's case teach these @#@#@ anything. I love england but this is what happens when the government gets control of your health care. It's bad here in the US too but this is archaic. I'll do anything to help. What can we do?
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    If You Could See Any Clinician In the World Today, Who Would You Pick?

    I'd pick Dr. Klimas Her Immune system knowledge is so impressive and she has so much experience with immune modulators and antiviral drugs. Plus I just think she would be cool to talk to.
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    Where does the CAA

    but We are very much in a political struggle with our illness . I would argue that political support is even more important than medical and has been for a while. The CAA is representing us at congressional meetings. They are meeting with staffers, senators and congressman. They are in...
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    Where does the CAA

    I stared this thread because I really feel uncomfortable with a group advocating for myself and all the other people with ME/CFS as far as funding goes, nominations to the CFSAC and research directions without knowing where there support comes from. The CAA is saying they are advocates but...
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    Where does the CAA

    get the bulk of it's money from? I have seen an accounting which shows most of it's money comes from a few large anonymous donors. As a group which advoocates for us and is representing the CFS community at every decision making and educational meeting I would think there is an obligation...
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    CFSAC meeting agenda posted

    Is the Science day going to be available to watch live on the web?
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    A review of EVB and CFS by Dr. A Martin Lerner

    Thinking the same thoughts I'm thinking the same things. My CFS started with an EBV infection/Mono. I've allways wondered if treating for EBV would help me even if it is not the underlying cause of my illness. And I still wonder if the EBV is the underlying cause sometimes.
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    The Age of Autism Blog: My wife, my daughter and XMRV

    Maybe they are afraid to publish it. Look what happened to Andrew Wakefield when he published a connection with Vaccines and autism. They found a way to retract his study from the Lancet and take away his licence. Imagine if XMRV has anything to do with vaccines or has some government...
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    If you test XMRV-, but have M.E. with immune dysfunction.......what then?

    Maybe there is another undiscovered virus/retrovirus I really think someone/ researchers need to go back and look into elaine Defreitas's research again. Why is no one doing this? I mean she was in the same situation as the WPI is right now except without the support of some others like...
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    XMRV infection rate points to cofactor not sole cause

    Recent WPI radio interview While listening to the receent WPI interview with Mike Hillerby he said something I thought was easy to understand and pretty funny. " If you saw 100 people in a room with a broken thumb and 85 were holding a hammer. You might think the hammer had something to...
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    XMRV infection rate points to cofactor not sole cause

    I have to agree this post should be moved as it really seems to be trying to start a discussion on a bacterial role in CFS. Also there is no way 7% of the population has CFS. It is .7 if that. The CDC estimate of 1-4 million is using a faulty criteria and a short phone survey to identify...
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    Who developed M.E./CFS Post-Mononucleosis?

    My Families CFS started Post Mono. I got mono first in 1987 then developed CFS. I was 17.I never recovered from the mono . I did also have chicken pox at the same time I got the mono. The rest of my family got CFS at the same time. My brother got mono and developed CFS. My mom got CFS but...
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    Short Term Disability for Relapses?

    thanks for the responses. I fear this is the end of my ability to work for a while. I'm hoping this will serve as a bridge to better days.
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    Short Term Disability for Relapses?

    I'm having a relapse that I just can't pull out of it. I really need to stop working. For how long I do not know. I have STD through work. Even though it would not be much money because I only have a 30 hr a week job it would be something. Does anyone know if you can use Short Term...
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    Neurontin

    It's only been a few days but so far The positive seems to be somewhat less muscle pain. Somewhat easier to fall asleep The negatives are feeling a little spacey, upset stomach today, woke up last night with a racing heart. My gut is telling me the good is not going to be worth the bad...