Just wanted to take a moment to tell you about some very exciting news. A recent study in Norway showed that a drug used to treat cancer, Rituximab, improved symptoms in 10 out of 15 ME/CFS patients. Two of the patients were completely recovered and able to go back to work! Here's an article from New Scientist that provides a good overview of the study. Apparently, the drug works by destroying B cells in the immune system...which makes sense since immune system dysfunction is such a central part of ME/CFS.
We should know by now not to get TOO excited over preliminary research, but this is a good starting point that will hopefully be followed up by some similar studies here in the U.S. and elsewhere. The great thing is that this is a drug that is already on the market, approved to treat lymphoma (they figured out it might help with ME/CFS when they treated a lymphoma patient who also had ME/CFS and he got much better), so if it does work, it is immediately available.
On another topic, the two new Facebook groups for teens with CFS and their parents are both going really well. The teen group has 10 members so far, and the parents' group is already up to 19 members, with lots of great discussions going on at both. So, if you fit it into either of these categories, please join us!
And, I am aware of the problems with the links I posted to the ME Mums and Dads group (for parents who have CFS) and the Pacing with a Heart Monitor groups. The problems are due to the fact that these are Secret groups (the two new ones I set up and the LDN group are Closed groups but not Secret), and I am working with the administrators of both groups to try to figure things out. As soon as we do that, I will post new links. A huge thank you to those of you who let me know the links weren't working!! They work fine for me - because I am already a member of both - so I wouldn't have known of the problems without your help. Stay tuned!
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
Interesting news on the cancer drug.....glad someone somewhere is researching! I hope some day they have a cure for CFS/ME and Lyme.....
ReplyDeleteI read the news myself with great interest. The drug they mentioned is already being used off-label for lupus, rheumatoid arthritis, and MS. It's interesting that they are making headway both in the areas of cause and treatment. Now, if the two can meet in the middle, we'd get all our answers!
ReplyDeleteI saw this too and am really interested in it!!! I honestly do keep hoping for that "magic bullet":)
ReplyDeleteBlessings and thanks for keeping us updated!
Elaine
I hope this is really something. I'm always hoping for a better life with this disease. I, being a young sufferer, really feel for those who lived in a time where there was no medication or research to ease the pain. I think that the internet definitely plays a part in how more diseases are being taken seriously and researched more vigorously.
ReplyDeleteWe are all hoping for a magic bullet, Elaine!!
ReplyDeleteI agree, Michelle, the internet has completely changed things in the chronic illness world - it has connected us and given us a voice, too! Not to mention helping us to stay informed. Without the web, it probably would have been months (if ever) before we heard about new research like this. Thanks goodness I got sick in the 21st century!
ReplyDeleteSue
While this is hopeful (and hope is something we need) I also realize that there are years of testing ahead before a disabled person like me would get it - and it's an expensive drug to boot.
ReplyDeleteMy plan right now: convince my specialist to do a trial even if I have to write the application myself. Then get in the trial.
Thanks for sharing your experiences here on your blog --- I enjoyed this post, and I'm looking forward to more.
ReplyDelete