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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Look, the bottom line is that when a researcher is hired as Science Director by the most influential American advocacy organization dealing with my disease, I want to know whether that researcher has any questionable views or biases in her outlook on the disease. If just a few years ago she accepted the CDC's Wichita cohort as a valid cohort, if she accepted the CDC's hypothesis of stress load causing CFS, and/or if she accepted the CDC's hypothesis that childhood abuse or neglect could ultimately cause CFS, then how do we know she still doesn't?
Of course she isn't going to conduct that kind of research herself; it's not in her area.
But let me try to explain it to you this way - when you vote for a politician, don't you want to know about her/his general political views, not just her/his platform? Similarly, if one's views on CFS have been influenced by a hypothesis that it is primarily linked to stress and genetic factors governing the stress response, one will tend to focus on a certain subset of genes for any genomic analyses, and be quicker to draw conclusions that align with that view. That is just an example of the subtle way in which bias can creep even into biological research.
I have no clear idea of whether this applies to Dr. Vernon, and what she really thinks; all I have to go on about her views on those subjects is the stuff from the CDC era, because she doesn't discuss them anymore. But I'd like to know, and as she's part of an advocacy group that claims responsibility for advocacy in my country, I think I and others have a right to ask without you trying to shout us down, don't you?
The same thing a lot of people want. Now that, as you say, Dr. Vernon is free of her "boss", there is nothing to sto her from incisively critiquing the CDC's flawed research that utilized the Empirical Definition, which is still being used by the CDC to this day to marginalize and stigmatize CFS patients, as well as to help bolster their recommendations against clinical biomedical testing which in turn allow insurance companies to deny our claims, AND to weaken the case for biomedical funding of the disease. Of course she can't prevent all that from continuing, but she can help.
http://www.cfids.org/cfidslink/2010/010607.asp#2a
I do not believe the empiric criteria as described in the 2005 paper should be used in research.
Here's the CAA
The Association does not support use of the CDCs empirical definition of CFS in federally funded research and has REPEATEDLY urged that CDC discontinue selecting CFS cases for its studies using these guidelines. The Association has never funded any research based on the empiric definition, nor has any education supported by the Association been based on the empiric definition. Review the Associations applicant research guidelines for defining cases and its current eligibility criteria for the BioBank.
Yes, I know what you're talking about, but you missed my point. Reading "Playing A Weak Hand Well"; it's hard to understand why she felt it necessary to defend the selection criteria used in those negative XMRV studies. She should have said that they were lousy criteria - the Oxford being even worse than the Empirical Definition, which she later said no one should use - and therefore their cohorts were extremely suspect. She could still be saying that now, as other negative XMRV studies have used questionable cohorts.
Her criticism of the Empirical Definiton came after patient pressure on the Association to do exactly that. Perhaps that was just a coincidence, though if that's the case I wish she had made the statement sooner; it would have reduced a lot of unnecessary tension with the patient community.
(Btw I was under the impression that Leonard Jason was consulted by the CAA and was responsible for developing the selection criteria for the BioBank. I made clear that I didn't know this for a fact, however.)
I think you may not be getting where Reeves was coming from, Cort. I really think he was modifying the term "Medically Unexplained Symptoms", or MUS, which has a specific meaning in medical circles relating to somatoform illnesses (Reeves' favorite kind), to include psychiatrically unexplained symptoms ("PUS"?), a usage I've never seen before... but it would mean that clinically there are symptoms of psychiatric illness without clear psychiatric diagnosis. It's a way to insinuate that evidence for psychiatric disorders is part of the basic presentation of CFS.
That's how I see his comment.
You mean you think she secretly thought her boss was full of it? Well, in that case, we can now hear it from her, and it would really improve the CAA's standing in the community if she did so (as I explained above).
What is the Associations position on the CFS research program at CDC? Do you support the CDCs empirical definition of CFS?
The Association has been very public in its criticism of the CFS Research Program at CDC. You can read a summary of our recent efforts.
I was sitting there yesterday (during the CDC presentation) feeling like my head was going to blow off my shoulders
This is a pivotal time in the battle between psychological and biomedical models of CFS, and a very confusing and politically-charged one. It would be nice to finally clear the air and know where everyone stands on crucial issues - in their own words, not those of their supporters.
(http://forums.aboutmecfs.org/showth...-Biobank-Who-is-supporting-this-on-this-forum)But as of June 8th, the enrollment criteria have been substantially widened. The main criteria are: diagnosis of CFS by a licensed physician under the Canadian or Fukuda criteria; post-exertional malaise; cognitive difficulties. There are some other exclusions for age, pregnancy, etc. The BioBank also needs samples from healthy controls, and these can include family, friends, neighbors, etc.
At heart we all want the same thing. If someone makes a mistake, I say forget about it and move on...We're only human. Let's give each of us a break -recommit to the main goal - healthy, happy, active lives Retro eek:) and move on...(to China if need be )
I support the excellent points made by Justin and Dr. Yes in this thread. I’d like to make two more.
1. Cort, thanks for pointing out the ways in which the CAA has distanced itself from the Empirical Definition. I wish the CAA would go a step further and end two troubling practices: distributing educational materials that endorse that definition and legitimizing it in comments to the media.
If Dr. Vernon has truly reversed her position on the criteria she co-authored, why does she tolerate the Association distributing pamphlets like this one? The Patient Brochure says, "More than 4 million people in the United States have chronic fatigue syndrome (CFS)..." The figure 4 million can only be obtained by applying the Reeves-Vernon-Unger Criteria (Empirical Definition).
Furthermore, what was Dr. Vernon’s reaction to Kim McCleary’s remarks to the media about the PACE study? CNN reported on 2/18, “McCleary said national estimates put the number of Americans with CFS at 1 million to 4 million.” Again, McCleary’s statement implies that the Reeves-Vernon-Unger Criteria are a valid means of determining who has CFS, which they are not.
Did Dr. Vernon support McCleary stating that 4 million Americans have CFS, a figure that folds in large numbers of depressed people who don’t suffer from any medical disease? If so, how can Vernon argue that she no longer endorses the ideology that gave rise to the paper she co-wrote with Reeves?
2. Cort, you’ve said a couple times that the CAA Biobank selects patients based on the Canadian Consensus Criteria. This is not the case.
In June, jspotila wrote,
(http://forums.aboutmecfs.org/showth...-Biobank-Who-is-supporting-this-on-this-forum)
In other words, the patients may fit a less restrictive definition—Fukuda with mandatory PEM and cognitive problems. This is significant because Fukuda, unlike both the CCC and Holmes Criteria, does not mandate a ≥50% loss of premorbid activity level for a diagnosis of CFS. Fukuda requires only a "substantial reduction" in previous level of activity; it clearly includes patients who have maintained more than half their functioning.
The distinction is crucial. Both papers that have associated HMRV with ME/CFS have studied patients below the 50% line; Lombardi et al. used the CCC and Lo et al. used Holmes. Any cohort supplied by the CAA Biobank for an HMRV study will not be a replication of the Lombardi and Lo cohorts—i.e., patients at the bottom of the disability spectrum.
This is unfortunate, because Dr. Mikovits speculated in Santa Rosa that the Science study detected HMRV in blood “…because we’re looking in the original paper, at the sickest of the sick, and those who have been sick anywhere from 10 – 30 years, so that presumably they have higher viral loads in their entire body, and that’s why we could see it in their lymphocytes.”
The point is, Vernon and the CAA have not fully embraced the CCC, which are sufficient but not necessary for inclusion in their Biobank. It's high time for her to issue a statement strongly endorsing the CCC for all Association activities--research, education, advocacy, etc.
Given Dr. Vernon’s recent connection with the CDC and the case definition that redefined CFS as a benign condition of unwellness, it’s absolutely appropriate to question her current ideology. Now that 96% of patients in the PR poll favor a change of direction and/or leadership at CAA, Dr. Vernon may finally be forced to account for her past actions and comments.
Does the Association support use of the Canadian Clinical Definition for ME/CFS (CCD) published in 2003 by Carruthers, et al.?
The short answer is yes. The long answer is a little more complex. First, it should be noted that the CCD was published in the Journal of Chronic Fatigue Syndrome (JCFS), which was never linked to medical indexes like PubMed or MedLine. JCFS is no longer in print. Therefore, this article did not become part of the mainstream medical literature and has received scant attention outside the relatively small field of CFS experts. There has been some discussion among its authors to seek publication in a journal with wider circulation; however, its length, 30+ pages, makes this proposition challenging.
On April 14, 2010, the Association invited Dr. Leonard Jason of DePaul University to deliver a webinar program on the various CFS definitions and their impact on research and care. During that program, he stated that there is an important need to standardize the Canadian criteria and to validate those criteria. He provided an example of how many different ways the cardinal symptom of “post-exertion relapse/fatigue/malaise” might be queried about and documented by different clinicians/researchers.
It is also important to note that many of the lab measures that might be used to operationalize categories of symptoms like “immune” are not clinically available, such as tests of NK cell cytotoxicity, which can only be reliably obtained from selected university research labs. Similarly, imaging tests, sleep studies, tilt tests, etc., are conducted at centers worldwide using different equipment and different protocols.
Comparing results of those tests is not as straightforward as it might seem on the surface. Making specific results from such tests mandatory for diagnosis or inclusion in a study presents important challenges and raises costs in a field that is grossly underfunded. And for individuals seeking diagnosis, access to and cost of extensive testing measures are important considerations.
The current general enrollment criteria for the SolveCFS BioBank enables patients diagnosed by a physician using either the CCD or the 1994 Fukuda definition to participate, although all patients must have post-exertion malaise even though it is not required under the Fukuda definition. The Association also recommended that the American Psychiatric Association take note of the CCD in its written comments submitted on April 1, 2010 in response to feedback on the DSM-5 proposal.
The CFIDS Association is actively working with Dr. Jason to ensure that the clinical questionnaires used for the SolveCFS BioBank will collect meaningful data that can be used to help overcome some of the definition issues that are huge challenges to the field. Having an established research network (as the Association does) and this biobank of blood/tissue samples AND extensive patient clinical information will be an enormous tool for the field and we hope the patient and scientific communities will support it.
Cort, This is unbelievable as in a few weeks the SoK meeting will take place and then CFSAC will follow. Some of the ME/CFS patient population will be walking through the doors saying " We are more concerned about who is Top Dog " rather than what is the NIH doing to help ME/CFS patients, then we can go to CFSAC and say " Hey you guys have been giving up so much of your time(Years) to help us patients that we would like to tell you thanks by making public statements like you are not worthy...Gee I can't wait for the Bloggers sitting at home to come up with some more Bright Ideas to move ME/CFS research forward. For those who do not like any one support group or association, do not join it or support it, then they will not be speaking on your behalf and please stop your whining that these groups who have fought for you have not done enough. They work and support THOUSANDS of patients with no financial support from those patients. You can form your own group and support it, then do what you believe to be so easy...You have no idea what these organizations have done for the masses. I will be at the SoK waiting to hear some of these great thoughts, so please bring them with you. As for P.A.N.D.O.R.A., the Wisconsin Association and the CFIDS AA I will continue to support them, Verbally and Financially.
We are seeing so much activity with new groups and new idea springing up. They are filling some of the holes that the CAA has left open in the advocacy arena. Its all good. Everybody has their place. I agree - we need all these groups to be strong - so that they can work in their own way.....
Justin I agree too much time is spent on my part and everyone's part focusing on whether the CAA is doing the right or wrong thing in the right or wrong way. It's taken up an incredible amount of time on my part - and its time to move onto the real matters at hand! Thanks