* I've changed the blog address from www.sarahsworld.me back to the original (badly chosen, but I'm stuck with it) address of www.kiwikchat.blogspot.com .

This means that some links to older posts and old links from other sites don't work. :(

Tuesday, October 25, 2011

Cockroaches, Dancing and Rituximab

I am so excited right now that if I wasn’t bedbound, I would be bouncing about my room dancing.

Since I am bedbound the best I can do is the occasional flail on my back, ‘the dead roach dance’.  Not to be confused with ‘the live roach dance’ which is only ever done in the presence of an actual live cockroach.

Anyway the reason I am breaking out my happy dance moves, is that there is a brand new reason to hope for people with me/cfs.

A couple of oncologists, Drs. Øystein Fluge and Olav Mella, in Norway discovered a possible treatment for me/cfs.   They were treating someone who suffered from both lymphoma cancer and cfs when they noticed that her cfs symptoms had gone into remission during the treatment.

The drug they used was rituximab (seriously who choses the names for these things), commonly used for lymphoma and rheumatoid arthritis. 

The oncologists, then initiated a clinical trial of rituximab  and to cut a long story short, it worked.  Moderately to well, for 60% of the people in the trial.

If you haven’t read the study results already, then you need to READ THIS. (yes that was a shout).

There are more trials to be done before we know if rituximab really is a safe and effective treatment for me/cfs patients.  

But it's an exciting start and that's something to celebrate.


  1. I know, Sarah! It's so exciting, huh! Fingers and toes crossed that help is not far away. Hugs.

  2. Hi Sarah,
    I'm a new reader and I liked what I read!

    I'm a Sydneysider dealing (not very well) with Fibromyalgia and I blog about all kinds of things. I saw the story about the Norwegian accidental discovery and was excited too! I linked it to my Facebook page Australian FMS Support Group.

    I'm glad I found your blog and I will be subscribing.

    Cheers and sorry this is a bit dry - I manage more animation usually but I'm crashing...

  3. Hi Annie,
    My toes and fingers are crossed as well which is making it hard to dance. I guess it will be slow but yes, help may actually be on the way.

    Gosh It makes me smile just to be able to write that. Woopee they are doing trials on a potential treatment...not just finding (more) biomarkers.


    HI Displaced,
    I can't imagine how hard it must be to deal with Fibro. I've read bits bout it because of the overlap with me/cfs and it sounds pretty horrific.

    Does anyone deal with these illnesses well? Sometimes I feel like I am killing it and then a crash comes along and lays me flat(er).

    I hope you feel a bit better soon and your crash isn't too bad. Sending a gentle fibro hug your way.

  4. I think we can heal before this starts getting used! Yes? YES!

  5. LIttle bird awake,
    yes, I bloody hope so too, but it's nice to know something is out there ...it helps keep the 'what if I don't get better' late night thoughts away.