ohh .. fell asleep while trying to read the summary thou its not yet even 6pm here yet (an unexpected visitor for a couple of hrs today, has wiped me completely out). Read it all now so im now off to bed to nap.
Thanks for that excellent distillation, George! Much appreciated! I also can recall the date and hour of onset - 27 years ago - made manifest by an out of the blue attack of vertigo during an otherwise enjoyable afternoon. Other symptoms followed within days.
The only thing I don't understand about this is why the majority of patients would show gradual onset rather than sudden onset. I know I can give you the exact date that I got "sick" October 5th 2006 at 6:45 a.m., no joke. I never recovered from that moment in time. However, for me each year that I taught I lost a little more ground becoming more and more ill but still able to think at the same levels. After the Oct. 5th my brain never worked the same, energy plummeted to never return. I can check off every category of the CCC criteria.
Interestingly, I was also losing ground over years but still quite functional until I finally hit the "crash" at 1:45 p.m. on October 25, 2006. I was in a meeting. My body was fine one minute and then the next I felt completely drained and exhausted. People sitting next to me asked me if I was okay because the change in my posture was so dramatic.
Thanks a lot George. I would also like a name change, but so far i've always been using the term CFS because that's what's used over here and because i don't know if we can really prove the inflammation of the brain and spinal cord (that's what encephalomyelitis means as far as i know). And i feel like if we can't prove something we should not claim we have it as it may present the skeptics with a spot where they can attack us. Even if CFS may lead people to underestimate what we have. But if they have finally found enough to give it a better name that would be great. Me personally, i often feel like i have inflammation, especially my face sometimes feels like this. Now if they could only measure that...
It's good Mikovits et al. publish more work, the only thing i'm not so happy with is this.. All of this is nice and good, but what we would really need is just one more study linking XMRV with CFS (or ME/CFS). There are patent applications, papers but not this one thing that we really need. One more positive study of good enough quality and the name change, the recognition by the public, doctors, politicians, the funding, etc., everything would probably just happen by itself.
But if this was written in February or March then at this point they were probably not yet able to do that and the other papers might be coming soon. I hope. The paper about the UK study would be very interesting to have. Thanks again.
A few thoughts on the name issue.
ME patients cannot be diagnosed with ME in the USA, so they get the name CFS. In the UK those who were diagnosed with ME have been shoved to one side by the term CFS, and now everyone gets CFS/ME. Also CFS does not describe what patients have. The name ME was used to describe people who did have brain and spinal cord inflammation. The tests that show these problems have been stopped.
As Mikovits and the WPI cannot do the replication study themselves, they can only continue to move forward. When a replication study does arrive, this type of work will be of enormous benefit.
The only people standing in the way of this is the HHS.
...The only thing I don't understand about this is why the majority of patients would show gradual onset rather than sudden onset. I know I can give you the exact date that I got "sick" October 5th 2006 at 6:45 a.m., no joke. I never recovered from that moment in time. However, for me each year that I taught I lost a little more ground becoming more and more ill but still able to think at the same levels. After the Oct. 5th my brain never worked the same, energy plummeted to never return. I can check off every category of the CCC criteria...
I've had uncertainty about my onset. There was certainly a "worst flu in my life", but the link to possible infection appears to have come weeks earlier. The general course of illness didn't really become potentially disabling for years. I've been convinced for some time the sudden onset is primarily caused by a co-pathogen which replicates rapidly. XMRV just doesn't seem to behave that way.
By virtually every account of its behavior, it replicates slowly and does not immediately provoke strong immune response. I'm blaming that on a co-pathogen, either a new infection hitting the same group or reactivation of a prior latent infection which had been so well-controlled patients were often not aware they had it. My bet is that virtually all the dirty work requires these co-infections.
You can be sure those who don't want to acknowledge such an infectious disease will have plenty of scope for misunderstanding. We continue to live in interesting times.
I met the new guy CG455 and found out he has the same 24/7 pressure headaches that I have, which is one of my most nagging symptons. First person I know of who has matched up with me on that! Sorry to get off subject.
Ok, thanks for the info. But i guess that did not cost more than a couple of weeks. The second round of drawing blood was around 22/7 if i read correctly, so it might still be a long time until a paper is published. I understand they can't be faster but it's just a very uncomfortable situation to wait for so long when you know that the answer that really matters is out there but you can't see the data. And you get to see other papers that are all good but don't tell you what you really need to know.
I was asking what tests you are referring to when you said that the tests that show these problems (inflammation of the brain and spinal cord) have been stopped.
In a very subtle way the WPI may be helping to remove decades of misinformation and provide quality information to new researchers coming into the ME/CFS/XMRV arena... Dr. Mikovits is certainly doing her part to give an honest account of what ME/CFS really is and I find this pretty wonderful.
While there may not be much new to us, the patients, this is an extremely valuable paper for us. I think George has it exactly right -- this paper is designed to educate researchers about CFS and the fascinating questions it poses. The more researchers who hear the facts (as opposed to CDC psychobabble) of this illness, the more (and better) science will get done. We desperately need more research.
:victory::victory::victory: for Drs Mikovits, Lombardi, and Ruscetti! They realize our (the patients') futures depend not just on their research, or the politics, but on Science recognizing ME/CFS. Once Science accepts us, politics will have a much bigger bugger to fight than our sickly patient population.