I have looked at Lancelot outside my window. The prison remains, but it is weakened.
Two beautiful, beautiful doctors in Norway have discovered a drug that has significantly improved.. and in two cases, cured, patients with Chronic Fatigue Syndrome. This is very good news.
They ran a double-blind trial testing the effects of Rituximab, a drug used to treat cancer, on their CFS patients. Not only did a full two thirds of those given the drug show remarkable improvement (and those blessed two patients who completely recovered) this study underscores the fact that CFS is a real, physical illness and not something that’s just happening in our heads. The doctors went out of their way to make that point.
And not only do they actually believe what we’ve been saying for decades, they believe CFS is going to end up being classified as an auto-immune disease. That classification has always made sense to me; it just fits. My body is attacking itself, thus I always feel like I’m ill and tired. It causes strange, unexpected side effects, like my muscles and joints which seem to be made out of bruisable putty.
These are good findings. They help validate the experiences of all of us who have been living with this illness. They tell us there are people looking for a cure. They tell us we’re not crazy, not imagining things, and not simply whiners who need to man up and walk it off. We are sick… but there is also hope.
There is still a long road ahead. Studies need to be reproduced, conclusions confirmed, and even then there will be years of testing before the drug would be available to those who need it. But it’s a glimmer of hope. One we didn’t have before. And I’m going to hold on to it, and breath softly into its embers. The mirror has cracked.
And yes, there have been some really lovely things happening in my personal life which I will be noting soon, but for the moment, this is what I’m going to blog about. We are not out of the woods, but I am still going to do the unheard-of and crack open a beer on a Thursday night to celebrate.
Those who would like to read more about the trial itself can find some good info here.
Breakable - A photo I took about having CFS.
My friend with severe RA just had her second dose of this med this past week- obviously it’s a little soon to tell, but the day after her dosages she has been PAIN FREE. Completely without pain. For the first time in years.
This makes me excited 🙂 And really, really happy.
And the idiots who don’t believe CFS is autoimmune are just that – idiots.
Oh, cool! I’m so happy for your friend! I was thinking about you when I read about it’s use in RA. Do you think you’ll end up trying it? I’ve read some people can have some nasty side effects from the drug (mostly in the nausea and vomiting family) but they seem fairly short lived and, jesus, I’d throw up a few times to actually get BETTER.
They are. I’d love to be able to switch bodies with them for a few hours.
Right now my RA is manageable with heavy doses of ibuprofren and tylenol – I know I need to get on methotrexate…. but I keep balking. It’s such a strong drug, and breaking down to take it is like admitting I do have a problem, you know? So I have quite a few drugs I can take before I venture into trial drug land. I just hate the side effects – methotrexate has a side effect of lymphoma cancer. Uhhh… no thanks? I know it’s rare, but still….. Oh, okay. I admit it. I’m kind of a coward who is in complete denial 🙂 My knees are just “puffy”. It’s *normal* to not be able to get up from the floor without pulling on stuff. Riiiiight? 😀
My friend had a SEVERE reaction to it the first time she took it – they didn’t give her some pre-medication (form of benadryl) that they were supposed to and she reacted pretty bad. She didn’t want to go in for her second dose, but apparently it went perfectly well, with smooth sailing all the way. She is a different sort though, as her body does not respond well to medications due to some other issues she has.
That said, this is the first time any drug has given her hope of being pain-free. I’m so excited for her, and for you.
Do they think there is any auto-immune aspect to your kidney issues? Might this help with that? I’ve got all my fingers crossed for you.
Ah, ok. What’s the methotrexate? Admitting you need heavy medications can be very scary, and dealing with (sometimes truly frightening) side effects can be bad… but sometimes you’re fucked either way, you know? But your RA problems may not be quite bad enough to make it worth the risk to you, which only you can decide. But me, I’d sign up to test this drug like a placid guinea pig in a heartbeat; no dandelions require for bribing 🙂
I have a feeling if I did have it done I’d need to give them some instructions on how to make me able to handle it (“give me Zofran WITH it or we’ll all be cleaning up buckets of barf”). That’s another thing I’ve heard, that even if you react badly the first time, it seems to be significantly better on subsequent visits.
I don’t know, and since we don’t really know what actually IS causing the pain, it’s hard to guess. I get the feeling it’s a separate issue, but you never know. If it helps with RA pain, maybe it will help with mystery pain too 🙂
I’ve had some startling results with a friend of mine who has RA very badly, using reiki. She came to dinner with her sister (another close friend) and me, and said she’d had to literally pull her left leg into the car. We had dinner, went back to the sister’s house, where I did about 25 minutes of very casual reiki on her knee. We were conversing the whole time, nothing formal about it. But she said the pain had diminished by “75% at least.” Next day, she called and said she discovered how effective it was when, without thinking, she ran up the steps to her front door. RA is autoimmune, which suggests some component of body-mind interaction. Interestingly, despite several invitations from me and the effectiveness of the pain relief, she never chose to schedule another session, which I also found significant.
That’s pretty interesting! (Both parts.) It always surprises me how my part of a Reiki treatment doesn’t matter much; I just have to show up and stick my hands out… whether I’m really into it, or my mind is wandering, it’s still working.
When I see my Reiki master for an EFT/Reiki combo session I leave feeling like I’m OVERFLOWING with energy; just skipping down the sidewalk. I usually feel better for a couple days after too, but then it tapers off. Even though I know how to do EFT also, I can’t replicate the effect on my own though; at least, not yet. I think there’s more of an art to learning to EFT really well.
Interesting. I have had almost no results doing self-reiki, which is the first thing one is taught. It seems to flow better when my intention is for someone else. Guess that’s why we all need each other.
Hmm! I definitely feel like I’m not as effective overall when I Reiki myself, especially for things like my muscle pain, but there are times when it’s just like magic. I tend to get nauseated a lot for various reasons and it’s incredibly helpful for those situations. But, as you said, we have other people to help us when we need it 🙂
It’s similar to my observation that people who can be amazingly wise for others, great listeners, super coaches, empaths and “connectors,” can at the same time make the dumbest damn decisions for themselves. Again, I think no one is an island, and we all do need each other. Just my 2¢ which won’t buy a cuppa coffee. 🙂
Ohh, ohh, oh! That would truly be so grand, were it to be the wonderdrug so many have been hoping for. Shoot, just some degree of improvement would mark it a wonderdrug.
Hope is the thing with feathers, dear Sarah! Let it perch in those fragile muscles of yours. ❤
Yeah, even if it didn’t erase all the problems, just having something that HELPS would be a huge step forward. And even if this particular drug didn’t do the trick, I think it’s still going to be a breakthrough in the field.
Hah, I almost posted that photo with this blog! 🙂
What?? I thought this had been common medical knowledge for years, that the “imaginary” nonsense was behind us. I remember 15 years ago, when my ex was diagnosed (yup, a medical diagnosis) hearing that there was a correlation to the Epstein-Barr virus. Who is still living in the dark ages? And what a wonderful report that it may be efficacious with RA! Great news.
I think the medical community has *improved* in this area, but the stigma is still alive and well. And it most definitely is in the general public, although I’ve been mostly lucky (with some very notable exceptions). My last GP didn’t believe I had anything actually wrong with me; I fired her a few months ago. It’s truly astonishing to me how people can just refuse to believe what tons of people are reporting; especially considering how much evidence there is for its validity.