A small Dutch study found zero evidence of XMRV in chronic fatigue syndrome patients. In some ways it was the weakest study of the bunch; it used quite old samples and a watered down criteria but it did use the same primers and a similar amount of nucleic acid as the original study. They searched for sequences on two of the viruses three genes. While not a replication attempt an editorial accompanying paper nevertheless asserted that the methods should have been sufficient to detect the virus if it was there -something that analyses by the ME Association and the CFIDS Association appeared to agree with.… Read More
Written by Kelvin Lord
By Kelvin Lord Treatment #10
Of all the things we have to deal with internally fighting this hideous disease, to me, the things that we fight externally are sometimes more debilitating.
This week I came face to face with one of the biggest enemies to recovery, the ignorance and insensitivity of other people. In my case, this shocking reminder of just how alone I really am in this battle came in the form of reminders from the two groups in my life where I least expected it – the medical professionals treating me, and from certain family members who really do love me.… Read MoreAdd Your Comment
Written by FernRhizome
Cheney/Mikovits – February 20, 2010
Part III, 20:00 min – 30:00 min transcribed by Lily
Cheney: If it were, we’d see a lot more than 10 million Americans infected with it, so there must be something that’s inhibiting the effective transmission of that agent given those numbers. Ten million versus let’s say one million. And also many people infected simply don’t get sick. At least they don’t get sick with CFS.
I’d like to turn next to that which I thought was a very interesting and very broad question, Judy, having to do with what is it about the biology and the pathophysiology of a retrovirus – let’s say it that way rather than XMRV it’s self – what is it about the biology and the pathophysiology of a retrovirus that fits with the syndrome of CFS?… Read MoreAdd Your Comment
Written by FernRhizome
(transcribed by Kim)
Cheney…in molecular biology from George Washington University and did her PhD work in the area of retrovirology, specifically how retroviruses, and specifically HIV, infect human monocytes. She studied under the legendary Dr. Frank Ruscetti at NCI, who is considered to be the father of human retrovirology, being involved in the discovery of the first human retrovirus, HTLV I in 1981. I think it’s also true, in my opinion anyway, that Judy is a superb scientist, very good in the laboratory, and it’s perhaps no accident that it needed that kind of superb scientist, laboratory scientist, to find this virus, as it has some difficulties associated with it in terms of looking at it and finding it and measuring it and we’ll get into that.… Read MoreAdd Your Comment
The inability of the second UK XMRV study – this time from a ‘friendly’ research group headed by Dr. Groom – to find any XMRV in a very large sample of patients was rough news for sure. The ME Action Group in the UK took a rather resigned tone in their response while Dr. Vernon highlighted a few methodological issues but mainly concentrated on questions about that original cohort. Neither presented much good news for CFS patients as a cohort answer to the current problems would mean the virus is only present in a very select subset of patients.
In their response to the latest paper the WPI defined the pitfalls they believe researchers face in validating their work – thus basically giving them a guide on how to find XMRV – and doing everybody a big favor.… Read More16 comments
Written by Kelvin Lord
(Kelvin continues his evocative portrayal of his Ampligen treatment and his experiences with ME/CFS. Check his blog for more entries)
I don’t want to say that getting a needle stuck in your arm is getting routine, but a nice short summary of this morning’s Ampligen infusion would simply be “speed.” Because I have now tolerated the full dose twice last week, nurse Gwen ramped up the rate of my drip today and got the whole 400ml into my veins in less than 35 minutes. Including taking my vital signs, charting my progress, and the rest, the entire process took no more than an hour this morning!… Read More
As expected Dr. Vernon, the Scientific Director of the CFIDS Association, delivered a rather comprehensive overview of the latest XMRV study in the Retrovirology journal. Dr. Vernon spent some time making clear who just who did this study; it was basically the best of UK retroviral researchers (one ‘world-renowned’) plus top ME/CFS UK researchers with long histories of CFS research.
Like Dr. Shephard she clearly felt this paper presented a significant hurdle for XMRV. She reported that the PCR methods were identical to those used in the original paper. When those techniques didn’t find any virus they looked harder using a different, much more sensitive PCR technique.… Read More15 comments
UK researchers are not winning the hearts and minds of CFS patients – that’s for sure. Just a couple of uplifting weeks after Dr. Mikovits displayed so much enthusiasm and confidence in XMRV the other shoe has dropped. An Imperial College researcher said another negative study was coming and here it is; this UK study also failed to find virtually ANY evidence of XMRV in a large number of CFS patients. This study was similar and different from the Imperial College study.
Annette Whittemore said to be cognizant of who’s doing the studies – in this case, though, there doesn’t appear to be any bias to question, no damning history of behavioral emphasis to reflect upon; two members of the study, Dr.… Read More12 comments
Let me begin by listing my reasons for writing this.
To share my experiences with everyone who’s interested but may never intend to see Dr. Peterson.To give some insight to anyone who might be considering making an appointment but may have concerns regarding what it may entailTo help someone prepare for a scheduled appointment to see Dr. Peterson
Becoming A Patient
Like many of you I had always dreamed of seeing a real, honest-to-goodness, CFS/ME specialist. Like most of you, over the course of 18+ years with this illness, I have vacillated between times of doing nothing medically with times of seeking out new treatment or alternative approaches.… Read More4 comments