1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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Would you take Rituximab

Discussion in 'Rituximab: News and Research' started by Andrew, Feb 6, 2012.

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Would you take rituximab

  1. yes

    62 vote(s)
    51.7%
  2. no

    29 vote(s)
    24.2%
  3. undecided

    29 vote(s)
    24.2%
  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,601
    Likes:
    5,392
    Albuquerque
    Since you are in the States, why not contact Dr. Kogelnik near San Francisco. Several patients here are taking rituximab at his clinic.

    Best wishes,
    Sushi
  2. Anne LiConti

    Anne LiConti Waiting for Rituxan

    Messages:
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    Likes:
    4
    Space Coast Florida
    Hi Sushi,
    Nice to meet you.
    I just learned about Dr. Kogelnik. Im thinking about it, its just that I would have to have a fundraiser to get me there, and to pay the man *grin*. ME/CFS financially depleted me years ago after having a $2000 a month medication for years before Medicare Part D was around. I also have other health issues right now that i am having to pay doctor co-pays for.
    When I can get to Dr. Kogelnik, I will definately be inquiring. Thanks for responding to my post! :)
  3. wastwater

    wastwater Senior Member

    Messages:
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    49
    uk
    I may have a measles connection too.mine was unconfirmed vaccine reaction at 18 months then ebv at 17 now 35 not worked since 17.Im wondering if hhv6 may play a role too
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,258
    Likes:
    3,656
    Cornwall, UK
    Like some others, my response is no because natural methods are already bringing significant improvements so that the illness is becoming more manageable, and I prefer to help the body to heal itself and fix the initial cause rather than poison it.

    I have never been as badly affected as many people here, and I do understand your desperation. Until I overexerted myself severely and repeatedly (trying to heat my house with scavenged wood during two freezing winters plus caring for a terminally-ill pet) a few years ago, I was just able to continue running a very small business, but the overexertion and stress took me from mild-moderate to moderate, and no longer able to cope financially, which I was only just managing before. I am now back to the mild side of moderate and am optimistic that I will continue to improve gradually.

    I have tried a range of treatments, mostly supplements, but it's only since finding the time to read up more thoroughly and combine particular things, and stick to it, that improvements have come.

    A couple of people feel safe in hospital - I don't. In fact after an emergency admission in 2010 I have resolved to avoid them at all costs. I have had hospital-acquired infections numerous times, but the last stay was the last straw, with doctors refusing to take on board what I said, staff failing to provide approved medication when needed, a cannula being left in unused for days, becoming inflamed and quite-possibly infected, and the wrong treatment being given, among many other things.

    And it's not just in the UK that people die from errors in hospitals. It seems to be common around the world.

    I would love there to be a safe magic bullet that will relieve people's suffering, and I applaud the courage and dedication that some show in their stated desire to try a drug to help others.
  5. Tristen

    Tristen Senior Member

    Messages:
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    421
    Northern Ca. USA
    Really high percentage of PwME are us Nurses. From my experience it seems most common profession hit with this hell on earth.

    I too am eager to hear developments on the Ritux research. Very exciting. The rate of research studies and discoveries on me/cfs have increased dramatically this last few years in many areas, which is truly wonderful for all of us. I also think of those newly diagnosed who will not have to go through this for decades
    ukxmrv likes this.

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