Cort
Phoenix Rising Founder
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Not to put too much of a damper on things but after looking closer I'm a bit worried - not about whether XMRV is in ME/CFS - but in how many ME/CFS patients its in. I'm not popping the bubbly - at least for myself - quite yet.
This is from my blog - it sounds a note of caution
http://aboutmecfs.org/blog/?p=969
This is from my blog - it sounds a note of caution
http://aboutmecfs.org/blog/?p=969
Who Are Those Guys? Gazing at the distant cloud of dust raised by his dogged but mysterious pursuers Butch Cassidy turned to the Sundance Kid and with some awe muttered “Who are those guys?” Despite all their tricks that posse had stuck on their trail like glue.
Has the Whittemore Peterson Institute’s posse caught one of the slippiest preys in all medicine? Or will a significant subset of ME/CFS patients slither through their hands?
A good part of that answer depends on “Who are those guys?” Specifically when WPI researchers called the subjects of their study chronic fatigue syndrome (ME/CFS) patients just who were they talking about? Answering that question may determine if the WPI posse can corral the whole disease or just a portion of it.
Lets take a close look at just who was in the little study that shook the ME/CFS world.
Stacking the Deck - The WPI did not choose your garden-variety chronic fatigue syndrome patients for their first study. To put it bluntly they stacked the deck. Stacking the deck is actually standard procedure in the research world. In their first study researchers usually include patients they think will best make their case. Those patients still fit the definition of the disease but they’ll often have less than subtle differences. (Given the vague definition of this disease make that very large differences. This is presumably one reason the CDC went to a random sampling scheme.)
An immune researcher would probably try to include pathogen loaded, cytokine upregulated, fluey patients. A endocrine researcher might fit in patients with hormonal problems. Perhaps not surprisingly that first study usually works out pretty well but the second one by an independent researcher who didn’t try and gild the lily, so to speak, often doesn’t.
Quote:
When scientists want to find a virus, we look for it in the sickest individuals because often this is where there is likely to be the highest levels of a virus, if present. Dr. Suzanne Vernon
A Special Group of Patients - In this case Whittemore Peterson Institute was refreshingly direct in how they ’stacked the deck’. They stated the study participants had’severe disability’, low natural killer cell functioning, increased pro-inflammatory cytokine levels (primarily IL-6, IL-8), ‘extremely low’ VO2 max during exercise testing and RNase L dysfunction. During a radio interview we learned that 20% of the patients had lymphoma. Without knowing their functional status it sounds like they are housebound and many very well may have been bedridden.
Outbreaks! (Outbreaks?) - They also came from areas where ‘outbreaks’ had occurred. The WPI took a page from the distant past when they included outbreaks in the parameters. No one to my knowledge has officially reported an ‘outbreak’ in several decades. Why therefore specifically go back to where ‘outbreaks’ had begun (and therefore not include ‘non-outbreak’ areas)?
Was this to highlight the possibly infectious nature of this pathogen or to draw attention to an important but mostly forgotten era of ME/CFS thinking? Or was it central to their case? Was limiting the participants of the study to known infectious events one way the WPI gilded their lily? (Will ‘non-outbreak’ patients fit the WPI’s scenario?)
Whatever the answer to that question these do not appear to be your normal chronic fatigue syndrome patients. A recent Pacific Fatigue Lab study, for instance, found low VO2 max levels in about half their participants. A considerable number of those participants came from Dr. Montoya’s and Dr. Peterson’s pathogen studded patients. Given that low VO2 max was ‘required’ for the WPI study it’s possible that a significant number of even pathogen ridden patients might not have gotten into this study. This was a special subset of patients, a group Dr. Peterson's been reported to say that he believes makes up somewhere around 25% of all ME/CFS patients.
The Big Question - Do I have an XMRV infection? Taking a very conservative view of this question and going strictly off this paper you’d have a good chance of testing positive for it if you had the following characteristics; an infectious onset, extremely low VO2 max levels, low natural killer cell functioning, RNase L. problems and increased inflammatory cytokines. (If you have all of those plus lymphoma you’re almost certainly in - but in a very bad way). Even in these very poorly off patients only two thirds of them tested positive for the virus (but see below).
Room For Hope - If you go strictly by the study one might begin to wonder how many patients it will apply to. There is considerable room for hope, however, that XMRV will be found in other than this type of patient. Dr. Mikovits reported that 95% of a larger set of patients (n=330) tested positive to an antibody tests. The antibody test did not measure active infection but it did indicate that these patients have been exposed to the pathogen. Dr. Mikovits also stated that she expects most ‘ME/CFS’ patients to test positive for the virus. Dr. Cheney, our only independent guide to the prevalence question right now, contributed 14 patients to the study and reported that his results were similar to the group as a whole. That’s encouraging.
It’s also encouraging that the patients came from me areas across the US.The virus has also been found in some FM patients, autism patients and atypical MS patients which suggests that the number of people with this virus will broaden not diminish.
Professional Recomendations - Given all this it wasn’t surprising that the first recommendation from the ME Association was for the WPI to begin
Quote:
Carrying out further and larger studies using different populations of people with ME/CFS, including people at different stages of the illness (to see if the virus is present in the same percentages in both early and late cases) and in all degrees of severity.
Dr. Vernon echoed this when she stated that
Quote:
“Independent replication studies should also include patients with mild and moderate CFS, at least one chronic disease control group (e.g., multiple sclerosis, lupus) and sex and age-matched healthy controls.”
Who Are Those Guys? So we don’t really know who ‘those guys’ - the guys with the viruses - are yet. Sure we have some tantalizing hints that the virus is found in more types of patients than the Science paper can show but before most patients should pop the bubbly they should wait to see studies that contain patients that look like them. The good news is that those studies should already be underway.
Beachhead Established - the Jungle Awaits - This is not to criticize the Whittemore Peterson Institute. It’s about being wary in the face of a complex issue. Given how research happens these problems are inevitable. The WPI’s first job was to establish a beachhead and they’ve established the most biggest beachhead yet in this disease. Their next job is even more difficult - to try and work their way deeper into the jungle that has been ME/CFS. Hopefully they’ll be able to.