Comments on: First Visit to Himmunitas and Prof. Dr. De Meirleir http://www.pugilator.com/personal/first-visit-to-himmunitas-and-prof-dr-de-meirleir/ On ME/CFS, Health, Science, Life, and Some Other Stuff. Tue, 07 Sep 2010 17:38:41 +0000 hourly 1 http://wordpress.org/?v=3.0.1 By: Johan http://www.pugilator.com/personal/first-visit-to-himmunitas-and-prof-dr-de-meirleir/comment-page-1/#comment-1053 Johan Mon, 09 Aug 2010 08:53:31 +0000 http://www.pugilator.com/?p=188#comment-1053 You were not only referring to the dr. that's taking them, but neither was I. You did not state that the causal link was proven, but wrote that some of the XMRV+ patients who take anti-retroviral medication feel better because it's killing the retrovirus. That sounds pretty causal to me. I am aware of the upcoming events and I really want some solid information, but after a year of smoke and mirrors, or is it cloak and dagger, I don't want to raise my hopes too high. I also want to read the Alter NIH/FDA paper, I just hope it's not going to be an <em>altered</em> NIH/FDA paper. Cheers Mac You were not only referring to the dr. that’s taking them, but neither was I.
You did not state that the causal link was proven, but wrote that some of the XMRV+ patients who take anti-retroviral medication feel better because it’s killing the retrovirus. That sounds pretty causal to me.
I am aware of the upcoming events and I really want some solid information, but after a year of smoke and mirrors, or is it cloak and dagger, I don’t want to raise my hopes too high. I also want to read the Alter NIH/FDA paper, I just hope it’s not going to be an altered NIH/FDA paper.
Cheers Mac

]]> By: Mac Angel http://www.pugilator.com/personal/first-visit-to-himmunitas-and-prof-dr-de-meirleir/comment-page-1/#comment-1052 Mac Angel Mon, 09 Aug 2010 08:28:00 +0000 http://www.pugilator.com/?p=188#comment-1052 Johan~ I did NOT state that causal had been proven. I stated that those taking the RV's were doing it "experimentally" with mixed results... I am not ONLY referring to the Dr. that is taking them.. I belong to another Forum where others are ALSO taking them.. With RV's most are concerned about the Nasty Negative side-effects also.. I was Just providing INFO... I was NOT advising or promoting Anything..OK? Beyond that I was just giving info about upcoming Events.. Johan~

I did NOT state that causal had been proven.
I stated that those taking the RV’s were doing it “experimentally” with mixed results…
I am not ONLY referring to the Dr. that is taking them..
I belong to another Forum where others are ALSO taking them..
With RV’s most are concerned about the Nasty Negative side-effects also..
I was Just providing INFO…
I was NOT advising or promoting Anything..OK?

Beyond that I was just giving info about upcoming Events..

]]> By: Johan http://www.pugilator.com/personal/first-visit-to-himmunitas-and-prof-dr-de-meirleir/comment-page-1/#comment-1051 Johan Mon, 09 Aug 2010 08:13:16 +0000 http://www.pugilator.com/?p=188#comment-1051 The initial research hasn't been confirmed yet, let alone there is a proven causal link. The most promising testsresults came from in vitro experiments, not in vivo. There is this group of patients, incl. a doctor, who took RV drugs, but I wouldn't call the results positive or hopeful. Some people start to feel better after taking a sugarpill. Haven't seen anything that is really convincing, whether is is proving or disproving the initial WPI study or treatment-wise. I will have to decide in 6 weeks time to either take the XMRV test or not, so I hope some good research papers will be published in the meantime. The initial research hasn’t been confirmed yet, let alone there is a proven causal link. The most promising testsresults came from in vitro experiments, not in vivo. There is this group of patients, incl. a doctor, who took RV drugs, but I wouldn’t call the results positive or hopeful. Some people start to feel better after taking a sugarpill. Haven’t seen anything that is really convincing, whether is is proving or disproving the initial WPI study or treatment-wise.
I will have to decide in 6 weeks time to either take the XMRV test or not, so I hope some good research papers will be published in the meantime.

]]> By: Mac Angel http://www.pugilator.com/personal/first-visit-to-himmunitas-and-prof-dr-de-meirleir/comment-page-1/#comment-1050 Mac Angel Mon, 09 Aug 2010 00:23:24 +0000 http://www.pugilator.com/?p=188#comment-1050 FYI~ recently those that have tested Positive~ some are experimentally already taking 1-3 different RV drugs with mixed results... since this is all early... but some of them ARE feeling Better cuz it IS killing the RV.. Some don't have Years to wait.. and need to squash what they can NOW. ...even tho later Trials and testing might so the "more perfect cocktail combo of Rx's"... Also, the International Symposium of Researchers is taking place at WPI not his coming week, but the following week, just before their Grand Opening.. with the 1st International XMRV workshop to follow shortly thereafter Sept 7 & 8 at the NIH.. and meanwhile we await the Alter NIH/FDA paper.... With the Departure of Dr Kerr and what's happening to Dr' Myhill and 2 other Dr's and now the CDC is also pulling the BS of wanting to do some studies with meds "ON Children" like the UK wanted to do with the "Lightening Process" something needs to be done to HELP these children and protect them from the CDC ~ASAP. Me thinks the Flashpoint is about to reach Ignition........... FYI~ recently those that have tested Positive~ some are experimentally already taking
1-3 different RV drugs with mixed results… since this is all early…
but some of them ARE feeling Better cuz it IS killing the RV..
Some don’t have Years to wait.. and need to squash what they can NOW.
…even tho later Trials and testing might so the “more perfect cocktail combo of Rx’s”…

Also, the International Symposium of Researchers is taking place at WPI
not his coming week, but the following week, just before their Grand Opening..
with the 1st International XMRV workshop to follow shortly thereafter Sept 7 & 8
at the NIH.. and meanwhile we await the Alter NIH/FDA paper….

With the Departure of Dr Kerr and what’s happening to Dr’ Myhill and 2 other Dr’s
and now the CDC is also pulling the BS of wanting to do some studies with meds
“ON Children” like the UK wanted to do with the “Lightening Process”
something needs to be done to HELP these children and protect them from the CDC ~ASAP.

Me thinks the Flashpoint is about to reach Ignition………..

]]> By: Laurie http://www.pugilator.com/personal/first-visit-to-himmunitas-and-prof-dr-de-meirleir/comment-page-1/#comment-1046 Laurie Sun, 08 Aug 2010 07:58:49 +0000 http://www.pugilator.com/?p=188#comment-1046 thanks a lot for your feedback. I hope to see him one day! your informations are so crucial to me...! thanks a lot for your feedback. I hope to see him one day!
your informations are so crucial to me…!

]]> By: Goals for 2010 — First Quarter — Life With ME/CFS http://www.pugilator.com/personal/first-visit-to-himmunitas-and-prof-dr-de-meirleir/comment-page-1/#comment-226 Goals for 2010 — First Quarter — Life With ME/CFS Sun, 11 Apr 2010 18:38:44 +0000 http://www.pugilator.com/?p=188#comment-226 [...] found professional help from a doctor specialized in ME/CFS and expect the results from the initial tests, and hopefully also a diagnosis and treatment in May. Even with all the medical expenses I allowed [...] [...] found professional help from a doctor specialized in ME/CFS and expect the results from the initial tests, and hopefully also a diagnosis and treatment in May. Even with all the medical expenses I allowed [...]

]]> By: Johan http://www.pugilator.com/personal/first-visit-to-himmunitas-and-prof-dr-de-meirleir/comment-page-1/#comment-213 Johan Sat, 03 Apr 2010 17:49:46 +0000 http://www.pugilator.com/?p=188#comment-213 Thanks for sharing that Rutt. I still find it too early, the retrovirus was discovered only 6 months ago, the findings aren't confirmed, and nothing is known about the effects on patient's health. I don't think a treatment is on the radar yet. Thanks for sharing that Rutt.
I still find it too early, the retrovirus was discovered only 6 months ago, the findings aren’t confirmed, and nothing is known about the effects on patient’s health. I don’t think a treatment is on the radar yet.

]]> By: Rutt http://www.pugilator.com/personal/first-visit-to-himmunitas-and-prof-dr-de-meirleir/comment-page-1/#comment-212 Rutt Sat, 03 Apr 2010 16:24:22 +0000 http://www.pugilator.com/?p=188#comment-212 Hi I am a norwegian ME patient following Prof. De Meirleirs treatment. He told me that if I got XMRV, he could treat it with a protein that "turns of" the retrovirus. That will stop the replication and make the symptoms better. Regards Rutt Hi
I am a norwegian ME patient following Prof. De Meirleirs treatment. He told me that if I got XMRV, he could treat it with a protein that “turns of” the retrovirus. That will stop the replication and make the symptoms better.
Regards
Rutt

]]> By: Johan http://www.pugilator.com/personal/first-visit-to-himmunitas-and-prof-dr-de-meirleir/comment-page-1/#comment-175 Johan Sat, 06 Mar 2010 10:19:33 +0000 http://www.pugilator.com/?p=188#comment-175 Hoi Jennifer. Mijn DMPS test is gepland voor 25/03 dus ik heb er nog geen ervaring mee. Ken je ME(CVS).net (http://www.mecvs.net/index.html)? Vriendelijke forum en er zitten redelijk wat patiënten van De Meirleir op, dus je zult waarschijnlijk snel een antwoord krijgen. Groetjes, Johan Hoi Jennifer. Mijn DMPS test is gepland voor 25/03 dus ik heb er nog geen ervaring mee. Ken je ME(CVS).net (http://www.mecvs.net/index.html)? Vriendelijke forum en er zitten redelijk wat patiënten van De Meirleir op, dus je zult waarschijnlijk snel een antwoord krijgen.
Groetjes,
Johan

]]> By: Weekend sendoff: It’s not all bad http://www.pugilator.com/personal/first-visit-to-himmunitas-and-prof-dr-de-meirleir/comment-page-1/#comment-172 Weekend sendoff: It’s not all bad Fri, 05 Mar 2010 18:06:33 +0000 http://www.pugilator.com/?p=188#comment-172 [...] his methodical approach to his treatment, especially the issue of whether to get tested for XMRV. In his first post, he raises the question and puts it to his readers, and in his second post, he explains the process [...] [...] his methodical approach to his treatment, especially the issue of whether to get tested for XMRV. In his first post, he raises the question and puts it to his readers, and in his second post, he explains the process [...]

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