Comments on: Looking Back, How Did It All Start For Me? http://www.pugilator.com/personal/looking-back-how-did-it-all-start-for-me/ On ME/CFS, Health, Science, Life, and Some Other Stuff. Mon, 30 Jan 2012 11:38:19 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: Johan http://www.pugilator.com/personal/looking-back-how-did-it-all-start-for-me/comment-page-1/#comment-1400 Johan Fri, 01 Oct 2010 10:56:10 +0000 http://www.pugilator.com/?p=41#comment-1400 The definition of CFS is so vague, there are probably a dozen or so sets of diagnostic criteria, ranging from almost complete psychological to completely biomedical. Is there 1 single cause for ME/CFS or not. I doubt it. So it's only to be expected to hear stories of (nearly) full recovery. My remission was primarily based on very strict diet, supplements, slowly increasing exercises (on my own) and meditation. But it didn't last, and it doesn't help much right now either. As for XMRV/MLV we'll just have to wait and see. Proving a causal link takes time, even years maybe. The definition of CFS is so vague, there are probably a dozen or so sets of diagnostic criteria, ranging from almost complete psychological to completely biomedical. Is there 1 single cause for ME/CFS or not. I doubt it. So it’s only to be expected to hear stories of (nearly) full recovery.
My remission was primarily based on very strict diet, supplements, slowly increasing exercises (on my own) and meditation. But it didn’t last, and it doesn’t help much right now either.
As for XMRV/MLV we’ll just have to wait and see. Proving a causal link takes time, even years maybe.

]]> By: Venus http://www.pugilator.com/personal/looking-back-how-did-it-all-start-for-me/comment-page-1/#comment-1385 Venus Tue, 28 Sep 2010 20:03:48 +0000 http://www.pugilator.com/?p=41#comment-1385 Yes, I agree- there is a lot of speculation out there right now and not enough hard data. I'm in a similar situation- sick, but not sick enough to be desperate and running off for XMRV tests, etc (and I also had not used antibiotics for 20 years until recently... not fun!). In addition, I am somewhat skeptical about XMRV/MLV being the cause of all CFS, considering that there are people out there who seem to achieve nearly full recovery. Yes, I agree- there is a lot of speculation out there right now and not enough hard data. I’m in a similar situation- sick, but not sick enough to be desperate and running off for XMRV tests, etc (and I also had not used antibiotics for 20 years until recently… not fun!). In addition, I am somewhat skeptical about XMRV/MLV being the cause of all CFS, considering that there are people out there who seem to achieve nearly full recovery.

]]> By: Johan http://www.pugilator.com/personal/looking-back-how-did-it-all-start-for-me/comment-page-1/#comment-1374 Johan Mon, 27 Sep 2010 17:55:32 +0000 http://www.pugilator.com/?p=41#comment-1374 Hi, well my entries on XMRV/MLV are the most popular ones. I have been tested for Lyme, but don't know which method they used. Might look into that. Already had 4 treatments with antibiotics this year, and probably another one coming up. I am really not looking forward to more antibiotics, after not having used antibiotics for 20 years. Judy Mikovits says quite a lot of things, I would prefer she had the data and a publication to back up her claims. She is getting a lot of critique for that from scientists. I am hoping for some interesting research this year as well. Still 3 months to go. Hearing rumors of interesting research, but will only believe it when it's properly published. Hi, well my entries on XMRV/MLV are the most popular ones.
I have been tested for Lyme, but don’t know which method they used. Might look into that. Already had 4 treatments with antibiotics this year, and probably another one coming up. I am really not looking forward to more antibiotics, after not having used antibiotics for 20 years.
Judy Mikovits says quite a lot of things, I would prefer she had the data and a publication to back up her claims. She is getting a lot of critique for that from scientists. I am hoping for some interesting research this year as well. Still 3 months to go. Hearing rumors of interesting research, but will only believe it when it’s properly published.

]]> By: Venus http://www.pugilator.com/personal/looking-back-how-did-it-all-start-for-me/comment-page-1/#comment-1361 Venus Mon, 27 Sep 2010 04:41:34 +0000 http://www.pugilator.com/?p=41#comment-1361 Hello, I was just reading your blog entries on XMRV/MLV - very interesting! Insomnia for a while, increasing fatigue, tick bite around age 13 but no symptoms until much later... I was having some mild health problems (swollen glands, muscle pains, fatigue) for the past five years, but nothing bad enough to stop my work. But things changed this past February when I suddenly went downhill. I was tested for many things and told I must have chronic fatigue syndrome. But- after a negative ELISA test for lyme, I found a doctor to give me a western blot test, and it came back positive. So I went on antibiotics two months ago (after 5 months of complete exhaustion). I'm still having symptoms, but my energy is *much* better. Conclusion: if I were you, I might try to get another (and better) lyme test. Incidentally, Judy Mikovits of the WPI apparently thinks that a large portion of chronic lyme patients (90%?) could have XRMV/MLV, which would explain why they aren't getting rid of the bacterial infection. It will be very interesting to see what the research shows in the coming year! Hello, I was just reading your blog entries on XMRV/MLV – very interesting!
Insomnia for a while, increasing fatigue, tick bite around age 13 but no symptoms until much later… I was having some mild health problems (swollen glands, muscle pains, fatigue) for the past five years, but nothing bad enough to stop my work. But things changed this past February when I suddenly went downhill. I was tested for many things and told I must have chronic fatigue syndrome. But- after a negative ELISA test for lyme, I found a doctor to give me a western blot test, and it came back positive. So I went on antibiotics two months ago (after 5 months of complete exhaustion). I’m still having symptoms, but my energy is *much* better.

Conclusion: if I were you, I might try to get another (and better) lyme test. Incidentally, Judy Mikovits of the WPI apparently thinks that a large portion of chronic lyme patients (90%?) could have XRMV/MLV, which would explain why they aren’t getting rid of the bacterial infection. It will be very interesting to see what the research shows in the coming year!

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