Nice to see some actual science in the mainstream media re. ME, though the description of ME - long-term tiredness and aching limbs - is hardly accurate. It is often much more disabling than this. But, hurrah for the Whittemore Petersen Institute! And of course Wessely is in already with his poisonous oar. Go away, you tiresome little man, no one is listening. Just heartening to see scientists engaged in serious ME biomedical research getting to front page.
*It made the New York Times too.
*It made the New York Times too.
14 comments:
I just read about the discovery of the virus, in this morning's paper. Now for research and medicine to wipe it out.
Hey Mim, It's early days, and important not to get too excited about implications, but it's a step forward at least.
Well it is all very interesting but it'll be a long time before we see any effective treatment I should think...even if this is 'the missing link.'
Some very interesting comments on the 'Indie' online version of this article...many of them attacking The Weasel who always has to stick his oar in but then he would since he has so much invested in his way of thinking: ego, finance and friends in high places.
Hey Amy, Yes, his reputation is far more important to him than the welfare of so many people who are ill. Another friend pointed out that it just seems like sour grapes.
Hey Cusp, Yes, I think everyone is proceeding cautiously, but it is great that such research is being given headline status. I didn't read the comments, it will just be same old same old, a circus of slagging off and being slagged off back.
This might be part of many missing links. It is encouraging that research is happening.
I wonder whether Simple Simon would be willing to sign on the dotted line that he would not mind receiving blood from CFS donors ever...
Oh, it made it to many news - se an overview here:
http://www.serendipitycat.no/?p=2401
I am SO happy!!
oh my god. the shower story! nothing quite like instilling sheer terror and panic...god. lots love x j
willow, encouraging is the right word.
s.cat, i think we have to remain cautious, there are no absolutes yet though the findings are exciting...
janelle, it is too upsetting to have your shower become an enemy, but all well now...x
PS. hey again, s.cat, i didn't realise just how widely the findings had been reported til i followed your link - this is heartening because it raises the profile of ME as a bona fide neuro illness, but, as i said, i am not getting my hopes up. i think after so many yrs of illness you learn not to, otherwise you will just be disappointed if a viable treatment does not emerge...
I can't imagine how it must feel after being ill so many years, this is only my second year of struggle and I guess you guys have heard so many tales of good news before.
I can't resist being very hopeful about this, not at least because the study seems so scientifically sound and has been published in a very well known sciencejournal. But also because what they describe is a direct link between the virus and the illness and it's symptoms.
Time will tell if this is part of the solution for our illness. At least I hope this turns focus more towards biomedical research, and we are trying to get Norwegian Health Department to allow funding to start replicating the study here with a Norwegian population.
Even if the XMRV-virus turns out to be the culprit, we are not done yet - treatments for retroviruses are not like a walk in the park. The hope is that already existing medical treatments can be used to make the virus go into "sleepmode" and the symptoms go away.
We will just have to wait and see. :-)
...you also have to consider the side effects of the anti-retrovirals, i certainly would not start taking these drugs without a great deal of consideration...& my understanding is that you have to stay on them lifelong...
I'm thinking the same thing about the anti-retrovirals, and the researchers also write this on their Q&A page: "It is possible that antiviral therapies developed for other retroviruses may be useful against another RNA virus like XMRV. However, these are generally toxic therapies with considerable side effects making it imperative that one be very careful before beginning any new therapies. "
http://www.wpinstitute.org/xmrv/xmrv_qa.html
It's not like we will be just taking a simple pill and feeling better....
I think it will depend on severity of ME, if I was in a severe phase as I have been in past I would prob risk drugs more readily. But I have not forgotten how horribly ill the plasma exchange and immunosuppressant therapy - completely different to what we are discussing, but experimental nonetheless - made me in 1984, but I was so ill at time I just went ahead. Now I am older and wiser...
Above, Amy left a comment but it has been coming to my dashboard repeatedly five months later asking to be moderated so I have deleted to see if it will stop. Here is her original, very fine comment: The tiresome little man said, "It's spectacular but needs replication." To which i thought, yes, and your work is crushingly, howlingly unspectacular, and still needs replication (preferably with a properly selected patient group etc etc).
I second your hurrah for the Whittemore Peterson Institute! It is indeed heartening to see people chipping away in the right direction.
Post a Comment