NIDDK Meeting on Defining the Urologic CPPS - June 16/17

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J Dimitrakov
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NIDDK Meeting on Defining the Urologic CPPS - June 16/17

Post by J Dimitrakov »

This communication provides general information, and is not a substitute for face-to-face medical care. A doctor-patient relationship should not be assumed by the reader.
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Re: NIDDK Meeting on Defining the Urologic CPPS - June 16/17

Post by webslave »

Great news, a very positive development! :banana:

The fact that the NIH/NIDDK is moving towards seeing CPPS and IC/PBS as a single set of disorders with similar etiologies and phenotypes is a groundbreaking move. For once, some solid leadership from their quarter.
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Re: NIDDK Meeting on Defining the Urologic CPPS - June 08

Post by Paso »

To me this is two folded. A part of me feels like this is a way to just bolt together all the problems they do not know how to fix into one big group...How will this help us?
Age:34 | Onset Age:29 | Symptoms: Suprapubic burning on and off, frequency on and off, Dribbling, | Helped By: PT for sure has helped me, stretching, Baking Soda, drinking lots of water, Omega 3 | Worsened By: Concentrated urine, Coffee, Stress...
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Re: NIDDK Meeting on Defining the Urologic CPPS - June 08

Post by webslave »

This will help us by allowing researchers to see us, male and female, as one patient population, and look for commonalties, rather than focussing on one biomarker from the bladder only, or pus cells from the prostate, or necessarily the prostate or bladder in isolation. It makes them look at this disorder as a whole body disorder with unifying genetic and biochemical defects. And in so doing, it will also discourage all the useless research looking for this bacterium or that one.
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Re: NIDDK Meeting on Defining the Urologic CPPS - June 08

Post by carld »

:icon14: :banana: When I think of where the research was only 2 years ago when I was hit with this and where the possibilities are heading...It's a good era to have CP/CPPS because there is hope for understanding pathology here.
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I encourage anxiety prone UCPPS people to consider L-Theanine
Age, 44 onset age 37 Feb 2006 Freq. need to urinate. Sensation of having to urinate soon after going. Perineum discomfort/burning/tightness, pubic area discomfort @ times,poor urine stream, post urine dripping/spray. All symptoms have improved with my protocol. At the worst I give it a 1 to 2 on irritation and discomfort and frequency. Helps: Elavil 5mg for anxiety and mast cell protection, (will only take it as needed) self internal PT as needed, stretching, walking, stairmaster cardio workout and light weights, reducing stress, moment to moment relaxation, deep breathing relaxation and using a Theracane. Makes worse: sitting for long periods, stress, over focusing on it. Currently 95%-98% recovered. Stay positive, relaxed and control your anxiety.
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Re: NIDDK Meeting on Defining the Urologic CPPS - June 08

Post by popburner »

This makes me very excited! My parents (both JHU biochemists) have already got their tickets and are going to act as "informed" family members of a patient. I may even fly back east for this myself. It's important that we're there to witness this coming together. This is also major for insurance issues - as these kind of definitions often help determine diagnosis codes, etc maybe making it easier to get reimbursements.
Age:29 | Onset Age:29 | Symptoms: ORIGINALLY - rectal pain, penis tip pain, perineal spasms, golf ball feeling in perineum, painful ejacualation ONGOING - rectal pain, penis tip hypersensitivity, urethral pain at beginning of urination, ejaculatory pain, burning skin around legs and buttox | Helped By: warm baths, NO catastrophic thinking, Physical Therapy; Stanford/Wise-Anderson Protocol; Mirtazipine (Remeron) for anxiety and sleep, dry needling of TPs (NOT injections), PAIN PSYCHOLOGIST (CBT and Commitment and Acceptance Therapy), diet changes - so far eggs are out doing an elimination diet now :) | Worsened By: ANXIETY, FEAR, STRESS, CATASTROPHIC THINKING,heavy weight lifting , sitting too long
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Re: NIDDK Meeting on Defining the Urologic CPPS - June 08

Post by J Dimitrakov »

The agenda for the meeting has been posted and is available here:

http://www3.niddk.nih.gov/fund/other/Ur ... agenda.htm

For the patients attending, here is your chance to hear and be heard

Tuesday, June 17, 2008
Session V: A Patient Advocacy Panel

Best,
JD
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Re: NIDDK Meeting on Defining the Urologic CPPS - June 08

Post by garyholc »

It seems that research into this condtion is really speeding up over the past few months which is great news, hopefully this condition can be treated and perhaps even cured effectively in the future with just a visit to your doctor! :agree:
Age: 33 | Onset Age: 32 Initial Symptoms: Frequent urination Current Symptoms: The odd feeling of frequency but not much else Helped By: Not thinking about it, hot bath, red wine, light exercise, Bowen technique seems to help, getting on with my life Worsened By: catastrophic thinking, worrying things will get worse, feeling depressed, reading websites too often! Work! Sitting in work all day isn't good!! Current Progress : Since 1st Sept 08, no pain!!! :)
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Re: NIDDK Meeting on Defining the Urologic CPPS - June 08

Post by webslave »

See http://www3.niddk.nih.gov/fund/other/Ur ... agenda.htm

NIDDK Meeting - "Defining the Chronic Urologic Pain Syndromes - International Symposium"

The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) will host a symposium, "Defining the Chronic Urologic Pain Syndromes - International Symposium" on June 16-17, 2008 at the Doubletree Hotel in Bethesda, Md. The purpose of the symposium is to enlist expert opinion related to the multiplicity of factors involved in defining the urologic pelvic pain syndromes and explore the pros and cons of developing a unifying definition. The meeting will be informative for clinicians, basic scientists, patients, advocacy groups, pharmaceutical representatives, and the public interested in developing a further understanding of the urologic chronic pelvic pain syndromes and the associated disorders. A major outcome will be development of a definition of these diseases, and their phenotypes which will be used in future NIDDK funded research studies.

The meeting is open to all, however pre-registration is essential because of seating limitations. For more information on the meeting, including the program agenda , go to http://www3.niddk.nih.gov/fund/other/UrologicPainSynd/

Contact Maria Smith at (301) 670-4990 or by e-mail at [email protected].
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Re: NIDDK Meeting on Defining the Urologic CPPS - June 16/17

Post by webslave »

Still hoping someone can update us on the proceedings of this Meeting....
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Re: NIDDK Meeting on Defining the Urologic CPPS - June 16/17

Post by webslave »

Finally, some details:
Defining The Urologic Chronic Pelvic Pain Syndromes: A New Beginning - An International Symposium
18 Jul 2008


BERKELEY, CA (UroToday.com) - Report on the meeting of the National Institute of Diabetes and Kidney Diseases Conference June 16-17, 2008 - Bethesda MD.

In December 2007 The NIDDK held its first workshop on urologic chronic pelvic pain. It was concluded that future research studies need to be conducted that will:

a) incorporate the basic diagnostic symptoms of the significant concurrent co-morbid disorders into the urologic diagnostic protocols;
b) explore, in more detail, the relationship between these co-existing disorders; and
c) develop diagnostic protocols that will allow disease identification by the generalist physician and not limit it to an organ-specific specialist.

The follow-up workshop was held in Bethesda, MD on June 16th and 17th with guest participants from Europe, Asia, and North America and was open to the public and patient organizations. Its purpose was to assemble a group of international experts in urology, gastroenterology, internal medicine, rheumatology, epidemiology, behavioral science and other disciplines with a goal to re-characterize the two most common urologic chronic pelvic pain syndromes, interstitial cystitis (IC) and chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS). The meeting was seen as a prelude to the "Multidisciplinary Approach to Pelvic Pain (MAPP) multicenter program, set to begin later this summer. Centers for the MAPP have not been officially announced.

While no conclusions were reached, several interesting papers led to wide ranging discussions on the following topics:

-- Is the perception of chronic pelvic pain organ and gender specific?
-- Would a questionnaire need to be gender specific?
-- Are the current definitions too restrictive?
-- What is the relationship between urologic pelvic pain syndromes and the other chronic pelvic pain syndromes?
-- Is the relationship an epiphenomenon or do these relationships provide a clue to common pathophysiology?

Andrew Baranowski from Queen Square in London examined the issue of classification. He discussed the classification of bladder pain syndrome put forth by the European Society for the Study of Interstitial Cystitis which classifies patients based on whether or not they had bladder endoscopy or bladder biopsy - and the findings of each procedure. He noted that classification should allow appropriate (best) assessment and management of the condition in its own right and for the patient as a whole. It should provide a platform for future research and be usable for all stakeholders: the practicing physician, researcher, patient, support groups, and reimbursement agencies. A good classification system employing phenotype, terminology, and taxonomy allows logical patient flexibility in the system, enables development within the system, and enables logical empirical and generic treatments to be employed.

Quentin Clemens from the University of Michigan discussed perceptions of urologic pelvic pain. He noted that patients may manifest symptoms from more than one, what he termed "afferent neurourology disorders": BPS, CP/CPPS, overactive bladder, "bladder hypersensitivity disorder", orchalgia, and chronic epididymitis. These disorders are common and may have similar patterns in men and women. They may be a part of a systemic disease complex. In one study he noted, only 19% of patients with new onset symptoms of prostatitis had symptoms three months later (Clemens, et.al., J. Urol, Dec. 2005). Interestingly, he cited research indicating that while "prostatitis" may account for 2 million office visits per year, 38% of primary care providers, when presented with a vignette of a man with CPPS, indicated that they had never seen such a patient. Dr. Clemens is currently working on a condition-specific instrument. He concluded that anatomic differences and possible gender differences in how pain is experienced make it necessary to have gender specific terms in any such instrument.

Philip Hanno, your correspondent, discussed the results of the Society for Urodynamics and Female Urology special meeting on bladder pain syndrome in February in Miami (Read Complete Highlights). He stressed the importance of a new terminology. This idea was furthered by Mr. Paul Abrams from Bristol, UK. In an elegant presentation, he concluded that "interstitial cystitis", as a term, has spurious diagnostic authority which raises patients' expectations of cure. Specific terms such as "interstitial cystitis" should only be used when histological features reflect the name. The terms "painful bladder syndrome" and "bladder pain syndrome" do not reflect or assume an etiological knowledge. Subsets of patients may be described in the future, perhaps with the aid of the MAPP program, by disease specific terms as pathology and phenotype become well understood. Mr. Abrams concluded by noting that the International Continence Society would be happy with either the term "painful bladder syndrome" or "bladder pain syndrome". The terminology "BPS including IC" is somewhat misleading as there is no accepted definition of IC per se.

Dr. Anthony Schaeffer from Northwestern University discussed current concepts and etiology in the treatment of chronic prostatitis/chronic pelvic pain syndrome. The syndrome includes most men with prostatitis: and is marked by pain localized to the pelvis for at least 3 months, with or without irritative and obstructive voiding, in the absence of urinary tract infection. The NIH chronic prostatitis symptom index in conjunction with lower urinary tract localization of symptoms, and a residual urine determination, are sufficient in the majority of cases to make the diagnosis. Ejaculatory symptoms and voiding dysfunction may require optional urodynamics and/or pelvic imaging studies. There are no issued guidelines for management of the condition. Dr. Schaeffer concluded with data on monocyte chemoattractant protein-1 and macrophage inflammatory protein-1a and their elevated levels in the expressed prostatic secretion of men with CPPS, suggesting that we may have come full circle, and the prostate itself may be involved with the pathology responsible for this enigmatic syndrome in at least some patients.

Dr. Tony Buffington from Ohio State University focused on stress and the stress response system (SRS). Stress is often defined as "challenging emotional and physiological experiences", but perhaps is most accurately defined as any "thing" that activates the SRS. BPS may be a sensitized SRS with increase in startle response, increase in autonomic nervous system nervous system activity, and decrease in adrenocortical restraint. He discussed research by Wallach and Jonas (J. Alternative and Complimentary Medicine, volume 10, supplement 1, 2004) indicating that patient rapport, touch, a confident approach, normalizing expectations, and individualizing treatment all play a role in good results. Incorporating reassurance and support and delivering a conditioning stimulus along with effective therapy can improve outcomes. Dr. Buffington concluded that the SRS can affect the bladder. BPS may be an "allostatic" illness. Developmental issues may play a role through epigenetic mechanisms. This view may open additional avenues for basic and clinical research, and become a part of the MAPP effort. For those readers who, like this author, do not have a good comprehension of these terms in this context, Wikipedia is useful. The term epigenetics refers to changes in gene expression that are stable between cell divisions, and sometimes between generations, but do not involve changes in the underlying DNA sequence of the organism. The idea is that environmental factors can cause an organism's genes to behave (or "express themselves") differently, even though the genes themselves don't change. Allostasis is the process of achieving stability, or homeostasis, through physiological or behavioral change.

Dr. Ragi Doggweiler from the University of Tennessee Medical Center in Knoxville gave a beautiful presentation on the mind-body connection. She discussed physical, emotional, cognitive, and behavioral manifestations of stress.

Dr.Jack Warren from the University of Maryland discussed antecedent non-bladder syndromes in a case control study of the disease that has been on-going, concluding that some patients have a systemic syndrome not confined to the bladder. Eleven antecedent syndromes were more often diagnosed in BPS/IC cases, and most syndromes appeared in clusters. Fibromyalgia-chronic widespread pain, chronic fatigue syndrome, sicca, and irritable bowel syndrome comprised the most prominent cluster, and patients with one or more of these syndromes were more likely than controls to have migraine, chronic pelvic pain, depression, and allergy. He then discussed clinical research techniques that may be useful in determining whether the various pains of IC/PBS are from lower spinal cord central sensitization, modification by descending central nervous system signals, or another cause. The goal is to determine whether some, many, or most IC/PBS is a local manifestation of a systemic disorder, and in which cases it is truly an isolated bladder disease.

Dr. Robert Moldwin from the Long Island Jewish Medical Center in New York and Dr. Michel Pontari from Temple University in Philadelphia gave updates on vulvodynia and CP/CPPS respectively. Dr. Moldwin noted that vulvodynia may affect up to 6 million women, the etiology is unclear, pathology is found at the end organ, and may be found at the systemic and genetic level. Multiple comorbidities exist including fibromyalgia, interstitial cystitis, and irritable bowel syndrome. Dr. Pontari presented data suggesting that CP is similar in many aspects of demographics and associated medical conditions with other pain syndromes. There is similar overactivity of the sympathetic nervous system. There may be a different pattern of cortisol response and other differences related to the fact that it is gender specific.

Dr. Afari from the University of California San Diego discussed data she compiled with Dr. Bullones from Spain and Dr. Dedra Buchwald from the University of Washington looking at overlap between chronic pelvic pain syndromes and other unexplained medical conditions (fibromyalgia, chronic fatigue, irritable bowel, and temporomandibular joint syndrome). The most robust evidence was for irritable bowel and urologic pain.

Dr. Curtis Nickel from Kingston, Ontario, Canada concluded the meeting with an upbeat presentation on his pilot study in conjunction with 11 medical centers around the world looking at phenotypic associations between interstitial cystitis/painful bladder syndrome and irritable bowel syndrome, fibromyalgia, and chronic fatigue syndrome. He not only showed the feasibility of such a study on a shoestring budget, but presented a plan whereby centers could phenotype and treat these patients and correlate data through a multicenter database to see whether phenotypic information provides clues as to symptoms, prognosis, and response to treatment. Such a project could be done in real time without waiting for results from the MAPP project, and would provide synergistic data with the MAPP to accelerate research and hopefully find a way to help patients in both the near and long term.

This was another successful NIDDK meeting planned by Drs. Leroy Nyberg and John Kusek, and it stimulated many thoughtful interactions, the results of which are currently unknown but will undoubtedly bear fruit over time.

Reported by UroToday.com Contributing Editor Philip M. Hanno, MD, MPH
Article URL: http://www.medicalnewstoday.com/articles/115403.php
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Re: NIDDK Meeting on Defining the Urologic CPPS - June 16/17

Post by kevin »

Looks like things are really on the right track!

It's a bit disappointing to see that the MAPP grants have not been awarded yet ... I wonder if there have been delays.
Started: Spring 2003; high urinary frequency and pain associated with bladder filling; urinary hesitancy; pubic/prostate/perineal discomfort; Helped by: trigger point therapy, Afrin nasal spray, Cymbalta, hydrocodone (small doses), distraction. Makes worse: sex.

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