Cort, SOME BIG CHANGES FOR SURE!
I hope that they have the power to get some of that $32 billion approved for NIH each year to go into M.E. coffers.
I still say that people only respond to something that either benefits THEMSELVES or Scares themselves. Period.
The first thing that SOME of us bitched about from Day one was the NAME and the definition. I am telling you now and have told your predecessors for 22 F'ing years that WORDS have meaning. And to allow the CDC and NIH to call such a BRUTAL condition "chronic fatigue Syndrome" is a crime against humanity. We have had a petition for at least a decade saying that the psycho babble crowd can HAVE "Chronic Fatigue". 6 Billion people are chronically fatigued every day of their LIVES. We are SICK. We are in constant PAIN.
We are not fatigued, we are ILL! we have immunological and neurological damage, most probably from one or more viruses.
that is NOT chronic fatigue! it fits virtually identically the WHO definition for Myalgic Encephalomyelitis! 93.3, a neuro immune illness.
We have close to 9,000 signatures at www.rescindinc.org demanding that our government FUND biomedical research on this NeuroImmune Illness!
Back in 1989, as you now know, I showed that if you included all three levels of M.E. severity, it was costing the US economy at least
$9 Billion per year. And we got virtually no money each year for CEBV. Even if they wanted to study FATIGUE, that is a considerable amount of people. Fatigue is the main complaint of almost 20% of all doctor visits to regular GPs.
But, the ONLY thing we have in common with "fatigued" people is the prone position. We are SICK. We are Chronically ILL! most of us were stricken with a virus, bacteria or chemical insult that damaged our immune systems and our central nervous systems. The human body wants to correct itself and return to homeostasis. Whatever knocks us off those patterns must be found and eliminated. FINALLY, it looks like the panel changes means that the NIH crowd is getting scared. Jim Jones still needs to be knocked off this panel. he has had more than 25 years of "mucking up" the works and he has done NOTHING to help a single patient that i know of, and he has harmed quite possibly millions of people.
the fact that one of the top docs at the NIH was able to virtually replicate the WPI STUDY and that Dr. Shyh-Ching Lo, the discover of all the mycoplasma problems with some very sick Gulf War I veterans (there are now some 275,000 health care related claims from the 800,000 total soldiers involved in the first Gulf War) also was able to almost replicate the WPI SCIENCE study from Sept. 2009 PROVES that XMRV is something to be reckoned with. I still think that the XMRV finding is the MAIN reason for all these changes.
But, hopefully this is good news. and we sure could use it!
<dl><dt class="profile-profile_name">Name</dt><dd class="profile-profile_name">Fillingim, Roger B., PhD</dd><dt class="profile-profile_titles">Title(s)</dt><dd class="profile-profile_titles">Professor, University of Florida College of Dentistry, Department of Community Dentistry & Behavioral Science Staff Psychologist, Malcom Randall VA Medical Center
</dd><dt class="profile-profile_address">Address</dt><dd class="profile-profile_address">University of Florida College of Dentistry
1329 SW Archer Rd Room 5180
PO Box 103628
Gainesville, FL 32610
</dd><dt class="profile-profile_phone">Phone</dt><dd class="profile-profile_phone">352-273-5971</dd><dt class="profile-profile_fax">Fax</dt><dd class="profile-profile_fax">352-273-5985</dd><dt>
</dt><dt class="profile-profile_dept">Departmental Affiliation </dt><dd class="profile-profile_dept">Department of Community Dentistry & Behavioral Science, University of Florida
North Florida/South Georgia VA Health System
</dt><dt class="profile-profile_education">Education</dt><dd class="profile-profile_education">1984, BA, Psychology (Summa Cum Laude), Mercer University
1987, MA, Clinical Psychology, University of Alabama at Birmingham
1988-1989, Merit Fellowship, University of Alabama at Birmingham
1989, Deans Award, Outstanding Graduate Student in the Social Sciences, University of Alabama at Birmingham
1990, PhD, Clinical Psychology, University of Alabama at Birmingham
</dt><dt class="profile-profile_appts">Appointments</dt><dd class="profile-profile_appts">2006-present, Professor, Department of Community Dentistry and Behavioral Science, University of Florida College of Dentistry, Gainesville, Florida
2001-present, Staff Psychologist, North Florida South Georgia VA Health System, Gainesville, FL
2000-2006, Associate Professor, Public Health Services and Research University of Florida College of Dentistry, Gainesville, Florida
1996-2000, Assistant Professor, Department of Psychology, University of Alabama at Birmingham, Birmingham, Alabama
</dt><dt class="profile-profile_accomp">Accomplishments </dt><dd class="profile-profile_accomp">Studies (ongoing):
Grant #: 1 R01 NS42754-02
Funding Agency: NIH - NINDS
Title: Ethnic Differences in Responses to Painful Stimuli (Roger B Fillingim, PI)
Funding Period: 09/01/02-08/31/07
Grant #: 2 R01 NS041670-05A1
Funding Agency: NIH - NINDS
Title: Sex-Related Genetic Influences on Pain and Analgesia (Roger B Fillingim, PI)
Funding Period: 08/01/05-07/31/10
Grant #: 1U01DE017018-01
Funding Agency: NIH - NIDCR
Title: Risk Factors for Onset and Persistence of TMD (Roger B Fillingim, Subcontract PI) Funding Period: 08/01/05-08/31/12
Active Grants: Co-Investigator or Consultant:
Grant #: 1 R01 HL072059-01
Funding Agency: NIH - NHLBI
Title: Mindfulness Based Stress Reduction & Myocardial Ischemia (David S. Sheps, PI; Fillingim, Co-I) Funding Period: 05/01/03 - 04/31/08
Grant #: 1 R01 HL070265-01
Funding Agency: NIH - NHLBI
Title: Psychological Stress and Risk of Cardiac Events (David S. Sheps, PI; Fillingim, Co-I) Funding Period: 07/10/04 - 05/31/09
Grant #: 1 R01 NS053090-01
Funding Agency: NIH - NINDS
Title: Mechanisms of Central and Peripheral Hyperalgesia (G. Nick Verne, PI; Fillingim, Co-I) Funding Period: 04/01/05 - 03/31/09
Grant #: 3 P01 DE007509-14S10006
Funding Agency: NIH - NIDCR
Title: Physiological and Psychosocial Factors in TMD and Fibromyalgia (W. Maixner, PI) Funding Period: 12/01/04-06/30/09
Fillingim - Consultant
Grant #: 1 R01 AR46040-01
Funding Agency: NIH - NIAMS
Title: Fibromyalgia: Central Factors in its Etiopathogenesis (L.A. Bradley, PI)
Funding Period: 08/01/00-07/31/05
Fillingim - Consultant
</dd></dl> FYI - Etiopathogenesis is "the cause and development of a disease or abnormal condition"
Good news! I'm not opposed to shrink with dental expertise: one of my 1st symptoms of severe CFS related problems was TMJ! Had surgery; wonderful results!
I am worried about Dr. Jones; how is he going to reverse his positions on ME/CFS all of a sudden...could he be wrangling for the head of the CFS program at the CDC, or was he put on the SEP panel just to have SOMEONE from the CDC there? I mean, how could they leave the CDC out of the picture?:headache:
I think Mangan has his head and his heart in the right place, but hope he won't be taken along for a ride by the NIH.
Still, there's no mention of XMRV in all of this, and the public still doesn't know the danger they are in...I'm so glad the Ad is coming out soon. It may really light a fire under this SEP program.
Wonder why Mikovits is not on the panel? Or Singh and/or Bateman?
Well, I had a nice, long letter from Dr. Mangan this week in response to my short letter to Dr. Collins requesting more funding for research. I actually did not expect to hear from anyone so appreciate Dr. Mangan's effort.
His letter did not, however, list the people who will now be on the panel to review applications for grants. What good news your article brings, Cort. Thank you. And you got this list from Bob? Dear, dear Bob.
I am concerned about a dentist (with or without TMJ expereince) with no CFS experience being the head of the panel. Especially a dentist who is a hold over from a very dark period lacking a good faith effort to get to the bottom of CFS. Pain management is an adjunct, supportive role. A psychologist such as either Lenny Jason of Fred Friedberg with a long track record of CFS interest would be a reasonable choice.
The retention of Dr. Fillingim and his appoint to chair the panel is complete bullshit! He's a pain specialist who happened to go into pain associated with dentistry.
ETA: With the exception of Dr. Jones, the rest of the panel is very good news.
Advocacy Works - A Change Has Come and it is Real!!
Thank you for this detailed and illuminating article. When you have CFS you wake up everyday not knowing what to expect. I certainly never expected to read such good news that has the potential to be a real game changer. I believe that XMRV has provided an inspirational corner stone that can carry this weight and sustain future growth.
This new commitee is a credit to all who have selflessly advocated for proper research for the last 20-30 years. Congratulations to all. This is a new day. A level playing field was all we ever asked for.
A prayer for many more doors to open in the days, months and years to come. We are on the threshold of a dream.
The good news is that this panel has already met - it met early last month.
Charlotte and Bob found it; the makeup of the panel is actually quite hard to dig up for some reason. The CFS SEP panel does not appear to be listed in the CSR directory and I can get to the CFS panel page - but can't find the roster. I actually spent about 15 minutes searching the CSR site trying to find it. I don't how Charlotte and Bob found it actually.
I couldn't find earlier panels - I don't know when the switch occurred - it could have occurred earlier. We'll be able to partially see how effective the panel is by charting the number of funded studies over time. The problem is the Trans NIH Working Group - are they going to increase funding for CFS? We shall see and a FOIA will be able to tell us where studies get stopped.
The makeup of the CFS SEP can theoretically change dramatically from panel to panel because the makeup is supposed to reflect the subject matter of the grants coming in. Generally in the past they didn't change that much over time; the same people usually sat on the panel for over a year from what I could tell. My guess is that their term is for this panel and that many of them will continue on - but that is just a guess.
Considering the comments from out going CFSAC members last month I would surmise that this problem was rectified shortly thereafter. It looks as if some body high up has said "make every thing happen NOW". New website, new disease name (actually the old, old name) new leadership new SEP and it seems to be happening at the speed of light. As if everything the patient community could toss into the media bonfire when XMRV goes public is going to be answered, " we have rectified that problem".
No complaints from this portion of the peanut gallery.(big grins)
While I am thrilled to see the majority of the committee take a dramatic turn for the better, I thought that it might help to see an example of what Dr. Fillingim has been working on (126 articles on pain, one of which was on fibro in 2003, 13 on TMJ, 4 recent articles on IBS).
J Orthop Sports Phys Ther. 2010 Oct 22. [Epub ahead of print] Comparison of Graded Exercise and Graded Exposure Clinical Outcomes for Patients With Chronic Low Back Pain.
STUDY DESIGN: Quasi-experimental clinical trial.
OBJECTIVES: This study compared outcomes from graded exercise and graded exposure activity prescriptions for patients participating in a multidisciplinary rehabilitation program for chronic low back pain. Our primary purpose was to investigate whether pain and disability outcomes differed based on treatment received (graded exercise or graded exposure). Our secondary purpose was to investigate if changes in selected psychological factors were associated with pain and disability outcomes.
BACKGROUND: Behavioral interventions have been advocated for decreasing pain and disability from low back pain, yet relatively few comparative studies have been reported in the literature.
METHODS: Consecutive sample with chronic low back pain recruited over a 16 month period from an outpatient chronic pain clinic. Patients received physical therapy supplemented with either graded exercise (n = 15) or graded exposure (n = 18) principles. Graded exercise included general therapeutic activities and was progressed with a quota based system. Graded exposure included specific activities that were feared due to back pain and was progressed with a hierarchical exposure paradigm. Psychological measures were pain-related fear, (Fear-Avoidance Beliefs Questionnaire, Tampa Scale for Kinesiophobia, Fear of Pain Questionnaire), pain catastrophizing (Coping Strategies Questionnaire), and depressive symptoms (Beck Depression Inventory). Primary outcome measures were pain intensity (Visual Analog Scale) and self-report of disability (modified Oswestry Disability Questionnaire).
RESULTS: Statistically significant improvements (p < 0.01) were observed for pain intensity and disability at discharge. The rate of improvement did not differ based on behavioral intervention received (p > 0.05 for these comparisons). Overall, 50% of patients met criterion for minimally important change for pain intensity, while 30% met this criterion for disability. Change in depressive symptoms was associated with change in pain intensity while change in pain catastrophizing was associated with change in disability.
CONCLUSIONS: Physical therapy supplemented with graded exercise or graded exposure resulted in equivalent clinical outcomes for pain intensity and disability. The overall treatment effects were modest in this setting. Instead of being associated with a specific behavioral intervention, reductions in pain and disability were associated with reductions in depressive symptoms and pain catastrophizing, respectively. J Orthop Sports Phys Ther, Epub 22 October 2010. doi:10.2519/jospt.2010.3396.
I worked in a pain clinic for two years and I have no issue with psychologists in pain clinics. Psychologists are a vital component of what happens in a pain clinic but working in a pain clinic teaches you nothing about CFS. It may however give you an exaggerated sense of expertise if you view CFS as being primarily a pain disorder.
Another article (on work with pain patients, not CFS patients):
Dr. UF Researchers Find Spousal Attention May Be Too Much Of A Good Thing For Those With Chronic Pain
Filed under Research on Thursday, August 28, 2003.
GAINESVILLE, Fla. — “Honey, let me help you with that” is music to the ears of most spouses, especially when it comes to unpleasant tasks, such as washing dishes or taking out the trash.
But for the 86 million Americans living with chronic pain – caused by maladies such as back injury, migraines and arthritis – the attention of overly solicitous spouses actually may be more harmful than helpful, University of Florida dental researchers report in the current issue of the Clinical Journal of Pain.
“We were interested in understanding the relationship between spousal responses and pain and disability, and whether those relationships might be different for men and women,” said Roger Fillingim, an associate professor of public health services and research at UF’s College of Dentistry.
Although previous studies have demonstrated higher levels of pain and disabilities among patients who report more solicitous or overly supportive spousal responses, what has not been examined until now is whether men and women differ in how they respond to spousal solicitousness, pain and disability and other pain-related variables, he said.
To answer that question, UF researchers evaluated the responses of 203 men and 114 women with chronic-pain on several surveys, pain-tolerance assessments and measures of physical function. In one questionnaire, patients were asked to rate the responsiveness of their spouses, who were then grouped into two categories – those who exhibited high solicitousness and those who displayed low solicitousness.
Other questionnaires asked patients to rate the severity of their pain, disability and depression. Scientists rated the severity of each patient’s disability after they completed tests of physical function gauging how fast they could walk around a 100-yard track, and assessed their ability to lift and carry weighted boxes, push and pull against a device that measures strength and withstand pain induced by temporarily cutting off blood flow to the arm.
“Overall, what we see is that for self-reported pain and disability, spousal responses were related to those two factors in male patients but not female patients,” Fillingim said.
Men with highly solicitous spouses were more likely to rate the severity of their pain and disability higher than men with spouses who were less solicitous. But despite their differing perceptions, men in both groups performed the same on the functional tasks – indicating little to no difference in physical performance.
Women who reported having highly solicitous spouses had lower pain tolerance and poorer performance on functional tasks than women who said their spouses were not solicitous. They also were twice as likely to use narcotic pain medications.
“What it looks like is that the spousal responses are related to how men say they’re doing, while with the women patients, spousal responses seem to be related to how they actually are doing,” Fillingim said.
According to Fillingim, patients may be predisposed to a certain physiological response to pain depending on the type of attention their spouses give them.
“The idea is if you are a chronic-pain patient and your spouse babies you, essentially you are being rewarded for being in pain. And the more reinforcement you get for engaging in pain behaviors, the more pain behaviors you will show,” Fillingim said. “Many physiological responses can be behaviorally conditioned, and I believe that pain is no exception to that rule,” he said.
This idea is consistent with research conducted by Dr. Herta Flor at the Central Institute of Mental Health in Mannheim, Germany. Flor’s study also categorized chronic pain patients on the basis of spousal solicitousness during administration of harmless but unpleasant shocks, both in the presence of their spouses and without them. When patients with highly solicitous spouses were shocked in the presence of their spouses, they rated the pain as being more severe, and EKGs of brain activity showed a larger response to the painful stimulus than when their spouses were not present. For those patients whose spouses were not described as solicitous, the presence of their spouses did not affect their brain responses or their perception of the pain.
“So this suggests that a social variable, the presence of a solicitous spouse, may actually alter how our brain responds to pain and how we perceive pain,” Fillingim said. “It may not just be behaviors we’re conditioning here, it may be physiological responses that can either help us or hurt us, depending on how the conditioning occurs.”
Pain patients have a chronic condition they have to learn to manage, very much like diabetes, Fillingim said. Incorporating patient and spousal training as part of their treatment plans may help couples manage chronic pain conditions more effectively. Spouses can be taught to give other supportive responses that are not solicitous, such as distraction techniques, for example, or encouraging their spouses to use proven relaxation and strategies to soothe themselves.
“The whole goal here is to increase the patient’s control, function and independence, rather than making the patient less functional and dependent on the spouse,” he said.
“Our study addresses a very complicated issue, the variables of which need further study to explain,” he said. “But it does suggest that the interaction between clinical pain and interpersonal relationships may very well be different for men and women, and we should probably try to take that into account as we’re evaluating patients, designing treatments and training spouses on how to be most appropriately supportive of their spouses who are in pain.”