Dr. Suzanne Vernon, scientific director of the CFIDS Association, recently penned a commentary on three recent XMRV studies. Two of them—the Barnes study in England and the Henrich study in the U.S.—failed to find XMRV. Only the Donaldson study at Baylor College of Medicine in Houston found XMRV, in prostate cancer patients.
Henrich looked at several groups of immunocompromised patients, including those with CFS, HIV, transplants and rheumatoid arthritis. Barnes examined the blood of patients with HIV or hepatitis C.
CFS Central: In the Henrich and Barnes studies—unlike the Lombardi 2009 Science study—the researchers calibrated the PCR assay with a synthetic clone instead of a clinically positive sample. Synthetic clones have been used to calibrate PCR assays in other studies, including Dr. Myra McClure’s XMRV study done in England last winter. As you know, McClure is also one of the authors on the new Barnes study. Do you believe using a synthetic clone may have contributed to Barnes and Henrich not finding XMRV? Why or why not?
Suzanne Vernon: Negative results could indicate that assays are not sensitive enough. Positive controls and gold standards for XMRV detection in peripheral blood are needed.
CFS Central: In addition, Henrich and Barnes examined HIV patients for XMRV—and didn’t find it. There is significant evidence to suggest that infection with two retroviruses is unlikely, that infection with one retrovirus helps prevent infection by another, a phenomenon known as retroviral superinfection resistance (http://www.retrovirology.com/content/2/1/52). Would you comment on the possible role of retroviral superinfection resistance and negative XMRV findings in these patients?
Suzanne Vernon: The immune response to viruses that express similar antigens may help prevent dual infection. However, the role of superinfection resistance as it relates to XMRV has not been extensively explored.
CFS Central: Moreover, some of the HIV patients studied had been on ARV [antiretroviral] therapy. Do you believe being on ARVs could have made it more difficult to find XMRV in these patients?
Suzanne Vernon: It is possible although the chronic HIV cohort had not received highly active antiretroviral therapy for an average of 14 months.
CFS Central: Concerning the Henrich study, your article states that 32 patients met the Fukuda definition of CFS. However, in actuality these patients didn’t meet the Fukuda definition; they met the Empirical definition. The work of Dr. Leonard Jason has shown that 38 percent of patients who meet the Empirical definition actually have major depression. I think it’s an important point that Henrich is studying patients who don’t meet the Canadian or Fukuda definition, and who may be suffering from depression, not CFS. Would you explain your point of view concerning the CFS definition in this study?
Suzanne Vernon: Henrich et al used the 1994 CFS case definition criteria which is considered the revision of the 1988 CFS case definition published by Holmes. We have confirmed use of the 1994 criteria with the investigators. No one other than CDC has used the empiric approach in research.
CFS Central: You mentioned in your review that investigators should seek to replicate “as much as possible the features of the CFS patients found to be positive for XMRV and related MLVS in the studies published in Science and Proceedings of the National Academy of Sciences.” Shouldn’t a replication study replicate the patient group selected for the Science or PNAS studies precisely, by using the same definition—particularly in light of the divergent findings published and the resulting confusion that patients and researchers have been grappling with for a year? Thus, in these XMRV studies, shouldn’t patients meet the 1994 Fukuda definition and/or the Canadian definition of CFS, while weeding out the Empirical patients used in the Henrich study? Why or why not?
Suzanne Vernon: Study subjects in replication studies should be as similar as possible to those studied by Lombardi et al and Lo et al and should meet 1994 and/or Canadian.
.jpg){kind=small}
Thank you Mindy. Have been missing your posts. It is so quiet for news these days. And patients are -still- waiting.
ReplyDeleteIt is concerning that the authors of Henrich et al. felt it unnecessary to be clear about the definition they used. When would it ever be expectable to use the word 'revised' next to Fukuda except when referring to the Revised Fukuda. It is equally concerning that Dr Vernon choose not to question their use of the word 'revised' when she wrote her latest article, after all definition is critical in researching ME/CFS.
ReplyDeletePS.
It is worth remembering that the CDC is not the only sloppy criteria to be employed by one of the negative studies. Van Kuppeveld used the defunct Oxford criteria.
The above should read, when would it ever be acceptable. lol
ReplyDeleteI really don't see much point to these replication studies unless we know what disease is being studied. The differing (ever changing) definitions and names used in the US and Canada have rendered research next to useless because in every case the patients have been chosen according to differing criteria. It's just time and money wasting. To quote Dr Greensmith:
ReplyDelete“M.E. is recognised by the World Health Organisation as a neurological illness, for which the physical cause is as yet unknown and is categorised differently from Chronic Fatigue Syndrome. Bundling them [fatiguing illnesses] all together weakens any research experimental design, dilutes and distorts the findings, making it difficult, if not impossible, to generalise to any one particular illness and, therefore, hampers progress towards finding an appropriate treatment or cure for every one of them, packaged under the controversial umbrella term CFS, not just M.E."
When will the studies into ME's association to XMRV begin? Unless you are studying a real disease it's just garbage in, garbage out.
Well said Lisa.
ReplyDeleteI have misgivings about Dr. Vernon (a co-author on the Empiric definition) interpreting the Henrich et al study to indicate they used "Revised Holmes" (new on me) aka the Fukuda criteria. Why does the CAA now speak for the authors of this study? I would rather an advocacy organization spend time making news rather than reporting it.
Thank you as always Mindy.
I'm not sure the CAA can in all conscience call themselves an advocacy organisation anymore Otis. If they truly were they would as you say be making the news rather than reporting it. This kind of ineffectual response by Ms Vernon leaves you with the distinct impression that they are not really anything more than a mouthpiece for other organisations these days. Beyond the odd perfunctory criticism of the CDC, they don't really seem to be willing to take on any of the critical issues facing their members today in any kind of meaningful way. Their mute acceptance of the hybrid ME/CFS as a way of somehow righting the 22 years worth of misery, death and destroyed lives caused by CFS is a case in point. Surely an advocacy organisation would be aware of the the fundamental issues for research in doing so as outlined by Dr Greensmith, not to mention the utter futility and worthlessness of the exercise. Along with their webinars advising people who've been managing their illness alone for decades on how to manage their illness, the revolutionising "ME/CFS" is all they've got to offer it seems.
ReplyDeleteI would have to agree with Lisa Simpson's comment about the CAA and especially Dr. Vernon. I have been watching them closely for several years now and have never seen them do anything even remotely resembling advocacy for us.
ReplyDeleteThe CAA is now primarily a research organization and has been for the past three years or so. The only problem is, they've neglected to inform the patients of this fact.
ReplyDeleteI'd love to know what type of useful research they are funding? 25,000,000 million dollars researching WHAT??? All they've done is confuse everyone into believing The CDC bullshit.
ReplyDeleteWe questioned the CAA very closely about whether or not they still consider themselves to be an advocacy group, on Facebook recently. Finally, we did get the answer that "yes, the CAA is an advocacy group." This was just before the "inside voices" commentary by Kim McCleary.
ReplyDeleteThe good news is, that should disqualify any of them from sitting on the CFSAC board due to conflict of interest. The bad news is self-evident. :)
Dr. Vernon's answers sound cagey to me like someone hedging their bets. Frankly, like a bad politician on a Sunday talk show. The CAA is so far behind the curve they are flat lining. (apologies for the mixed metaphor). We need a real advocacy organization. The lead research organization is now the WPI.
ReplyDeletemichael
I agree with a slogan I saw recently, "the CAA don't represent ME". My sentiments exactly.
ReplyDeleteThe CAA has been the primary advocacy organization for the CDC's CFS and not for the truth, you won't find any information about the official status of M.E. at G93.3 or the global epidemics.
ReplyDeleteYou just need to read Tom Hennessy's story of the real history of the name change movement at his website R.E.S.C.I.N.D. to understand how CAA has helped destroy lives by keeping the CFS lie going. They pay themselves fat salaries and don't support WPI.
Now CAA has Phoenix Rising, Pandora/MCWPA and aboutmecfsforum all working together. They think ME/CFS is a name change but its still got a worthless CFS definition so its not helping one bit. Still no reference to G93.3 or the epidemics!
We have had better advocacy and reporting from Mindy here, from Hillary Johnson at Osler's Web and Amy Dockser Marcus at Wall Street Journal. And they don't ask us for money, they do it because its the right thing to do.
Thanks again for reporting the facts Mindy.
It is, unfortunately, not unusual for the Fukuda criteria to be referred to as "revised CDC" criteria. This is a revision from Holmes, as has been stated. It does get confusing now that there is a new "revision." However, use of the Reeves is not usually so transparent as to state that it is a revision. They usually simply make the false claim to be using Fukuda. You generally have to read the full text and see where they cited the Reeves "Empirical" approach to find out that they are using Reeves.
ReplyDeleteMindy, Dr. Lenny Jason has shown that 38% of people with MDD meet the Reeves criteria. This is not the same as 38% of Reeves patients having MDD. It's actually probably a larger percentage of Reeves patients, because mood disorders are more prevalent than CFS. The incidence of "CFS" increased by a factor of 10, meaning no more than 10% of Reeves disease would have Fukuda-CFS, the rest of them having random other fatiguing or depressive conditions, especially mood disorders.
I can't remember the figure exactly (or the citation from where this was tested), but I think only like 2% of Empiric patients are found to meet actual Fukuda criteria (and even those could still be MDD). This lower figure may come from the expectation bias demonstrated in the Switzer paper where they think tender lymphs, balance problems, and the like indicate some other disease!
Good catch, Willow. Thanks.
ReplyDeleteI've come to conclude that the CAA is an outstanding advocacy group. They are outstanding at advocating for themselves at the expense of people with true M.E.
ReplyDeleteHenrich et al. should correct their article as it does say 'revised CFS case definition (http:// www.cdc.gov/cfs/cfsdiagnosis.htm).' Not Holmes. Also, the CDC are currently using the revised Fukuda definition, not Fukuda, not Holmes. The CAA should be complaining about their failure to provide clarity around the definition used.
ReplyDeleteHow to reach you privately, Mindy, there are a couple things I would like to discuss with you- and suggestion of interview. Thanks, KAti
ReplyDeleteVernon sounds almost robotic in her responses. Certainly not like any form of "advocate" I would recognize.
ReplyDeletedr. vernon i have a few questions for you? why is it the cfids association never talks about the very important work found by gail kansky and her team on ciguetera (epitope)and the link to low level radiation...also why are all of you so fixed on xmrv and where it has 'not been replicated' and the above work is 'replicated' science...all patients tested for the ciguetera toxin are positives with the diagnosis of cfids...in fact this work also has been proven as a bio-marker for auto-immune illnesses...do you not think it is time for all the medical community to look at other serious avenues or are we now looking at another cfs azt aids type epidemic about to unfold...there is to much focus on xmrv and not enough attention on other serious cause(s) sincerely and always speak the truth aidan walsh southamton, u.k.
ReplyDeletec.d.c. and other institutions always place moles in places of interest to them...the c.i.a. does it all the time...sincerely aidan walsh southampton, u.k.
ReplyDeletewow; i learn something new every time i read one of your posts. hadn't known about superinfection resistance, or whatever it's called. thanks for keeping them honest!
ReplyDelete