Bringing the Heat: An ME/CFS Blog
The Recovery/Recovering Stories : ME/CFS is 
heterogeneous disorder with many different subsets. None of the treatments in the Recovery/Recovering stories will fit all or even most patients.
In May of last year I received an e-mail from Berit Frivold a chronic fatigue syndrome (ME/CFS) patient who’d been ill for 13 years. Like many people she’d tried just about everything she could get her hands on and nothing had worked. She noted that
Add Your CommentA Recovering/Recovering Story - The wide range of recovering stories demonstrate how varied the ME/CFS population is; each story will only apply to a subset of people with ME/CFS
(Vistide is a very strong drug that Dr. Peterson has been using in select patients for several years now. HVS has been telling about his experiences with the drug on the Phoenix Rising Forums and agreed to lay out his experiences in a more organized fashion)
Why did you decide to see Dr. Peterson?
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.
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.
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. Dr. Vernon stated it could be ‘considered better and more sensitive’ than used in the original Science paper and they stil came up nothing.
12 commentsUK 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.
12 commentsLet 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
3 commentsI came across a document* that shed more light on the search for the first retrovirus in CFS. It brought to mind how fraught with pitfalls the search for a retrovirus in chronic fatigue syndrome was in the 1990’s. The ups and the downs of the time were almost dizzying.
Let’s take a step back and examine how the whole process got started. Hillary Johnson covered this in depth in Osler’s Web but the new paper piqued my interest. It was no surprise that it was the ever-creative Dr. Cheney that threw the CFS ball into Dr. DeFreitas’ court, but why did he choose her?
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A look back at the Pro’s and Con’s of Dr. Reeves Tenure at the CDC
THE PRO’s - despite the antagonism towards Dr. Reeves there were some pro’s to his program
A commitment to research – whatever you want to say about Dr. Reeves he does appear to have been in committed to researching chronic fatigue syndrome (ME/CFS). We can’t know what the internal milieu at the CDC was like but at least in public he presented the disease is a serious disorder, worthy of research.
Add Your CommentIn a startling announcement on 3pm on Friday the CFIDS Association of America reported that the man who’d vowed to outlast everyone, Dr. Willam Reeves of the CDC, was out and that Dr. Elizabeth Unger was temporarily taking over controls of the CDC’s CFS Research program.
