Answers Being Found on CFIDS and Fibromyalgia- What Benefits for Ill Gulf War Veterans?
September 15, 2010 posted by Denise Nichols
I did attend the Salt Lake City conference on Chronic Fatigue Syndrome and Fibromyalgia this past Saturday my recommendation has already been made to the VA RAC GWI chairman and scientific director it is to invite DR Klimas and Dr Bateman to both share clinical insights on CFS and GWI clinical objective markers to the next RAC meeting after the Nov RAC meeting. An invite needs to be also made to Dr Patrick Wood to cover fibromyalgia and Dr Suzanne Vernon formerly with the CDC and a virologist.
My recommendation to the VA is that we need a Advisory Committee to deal with Clinical Care improvements for Gulf War Veterans that is backed up with valid research that is already published. We desperately need for clinical care at VA to be using this research and expertise on the outside re CFS Doctors and Researchers! Also anti Aging group of physicians have alot to offer also.
WE need better clinical care for our gulf war veterans now! WE can not wait longer, we have already waited 20 years for the VA to respond. We need those centers of excellence that are bench to bedside integrating research into fast track changes for the GWVets when they see doctors at VA!
Dr Klimas—Miami What a star.
Dr Bateman…..Another Star Physician in Utah but sees CFS civilians although there were at least 7-8 family members of gulf war veterans that came to afternoon session of their meeting which was patient conference portion, Dr Wood in Washington state again seeing mainly civilians.
I did ask that Dr Bateman included gulf war veterans in her work and research coming from CFS group as I know Dr Klimas is doing. She referenced Dr Nancy Klimas, I replied yes and I also mentioned Dr Baraniuk at Georgetown University but that we needed more than two physician/researcher on the East Coast! What about gulf war veterans all across the United States!
The health care providers conference was the morning session about 100 attendees but no VA Doctors that I am aware of atttended! The afternoon session was the patient conference and it blew me away when over 300 filled the opened up ballroom size room. They had rest areas for the ill civilian CFSIDS sufferers with mattresses in an adjourning room and an active display area for poster presentations on an array of topics and treatment options!
There was also a Dr(clinical) and researcher from Washington State on fibromyalgia. Dr Patrick Wood that would also be good to invite to same RAC meeting. He is with Pacific Rheumatology Associates.
Tremendous speaker and knows these other researchers personally it seems.
WE need to combine with CFS and FM and GWI as subset to find out how gulf war veterans deployed and nondeployed are alike/different.
These people need to help VA rewrite clinical guidelines for GWI/CFS/FM
They need to be involved in retraining VA Clinicans!!!!!
These people said over and over they learned from the patients!!! They listen to the patients and then go to the lab with clues given from patients and find the hard answers IN THEIR RESEARCH EFFORTS!!!!!
From Dr Woods lecture at Salt Lake City Medical Care Providers Conference September11. I learned so much from this one clinical physician that is also deeply involved in research on neuroimaging for fibromyalgia. I am using the information shared at that wonderful conference in Salt Lake City.
Abnormal sleep-Related brain activity- Reduction in Stage III/IV sleep and a increased incidence of alpha- delta sleep.
Abnormal CSF Fluid
decreased concentration of dopamine, norepinephrine,serotonin and increased concentration of substance P, glutamate, nerve growth factor, and endorphins
Moldofsky, psychosomatic Med 1975;37;341
Russel AM J Med Science 1998; 315;277
Decreased CSF Bioamine Metabolities Russell Arth Pheum 1992;35;550
Mildly Decreased Cortisol and decreased growth hormone levels
Autonomic Dysfunction baseline sympathetic hyperactivity, decresed parasympathetic tone, poor response to physical/mental stressors
Crofford Arthritis Rheum 1994 37, 1583,
Jones Semin Arthritis Rheum 2007;36;357
Martinez-Lavin Arth Res Ther 2007;9;216
His conclusion speaks to involvement of a single neurotransmitter in FM-Dopamine.
Wood Eur J Neurosc 2007; 25:2576
Neuronal Hyperactivation in response to stimulation
Abnormal brain metabolites
Disrupted dopamine neurotransmission
Reduced mu-opioid receptor availability
Gracely Arthritis Rheum 2002,46,1333
Wood, JPain in press
Kuchinad J Neuroscience
Wood J Pain 2007;8;51
Wood Eur J Neuroscience 2007;25;3576
Harris J NNeuroscience 2007; 27, 1000
Cortical Brain Atrophy Kuchinad- Accelerated brain gray matter in Fm, premature aging J Neuroscience 2007, 27, 4004
Reduced Dopamine Synthesis; Brainstem. Thalamus and Limbic cortex Wood Reduced presynaptic dopamine activity in FM demonstrated PET J Pain 2007
Abnormal Dopamine Response to Painful Stimulation Caudate Nucleus, Putamen, Globus Pallidus
Wood Eur J Neuroscience 2007, 25, 3576
He also discussed the presence or absence of cervical cord compression(Holman AJ, J Pain 2008;9(7);613
Watson Arthritis Rheum 2009; 60(();2839. Karlsson AK, Prog Brain Res 2006; 152;152;1-8 Staud,R Curr Rheumatol Rep 2004; 6; 258 Heffez Eur Spine J 2004:13(6); 516.appearing to have substantial bearing on relationship of symptoms to biological variables and raises question of two or more fibromyalgias.
He also discussed Adult ADHD as higher prevalence among patients with FM(30%)(Woods, American College of Rheumatology,2010) and explaining brain fog—more work needed to confirm.
And also a growing body of evidence suggest abnormal iron metabolism as a role in expression of FM symptoms(Woods and that it will be published next yr early in yr)
He reviewed Pharmacotheraphy—-Pregabalin(Arnold J Pain 2008 Sept pg 792-805) 30% reduction of pain, Duloxetine(Russel Pain 2008: 136 p 432)
, Milnacipran(Mease J Rheumatology 2009. 36 page 398)
He had many Clinical Pearls re Choice of Agent on antiepleptics and antidepressants
Then reviewed other agents with controlled studies
Anticonvulsants(Gabapentin) ***Arnold, Arthritis Rheum. 2007;56: 1336
Dual Reuptake inhibitors-Venlafaxine
Central Acting Muscles Relaxants – Cyclobenazaprine
Dopamine Agonists- Pramipexole–Holman and Myers, Arthritis Rheum 2005;52: 2495
Atypical Opiods- Tramadol
Sedative hypnotics*** -Sodium oxybate—Holman and Myers same as above and Russell. Arthritis Rheum 2009
Cholinesterase Inhibitors – Pyridostigmine- Jones. Arthritis and Rheum 2008
He mentioned needed for referrals for
Sleep testing PSMG/MMSLT
Medical imaging Cervical MRI
also for Rheumatology (inflammatory markers), Psychiatry(bipolar affective disorders, refractory mood/anxiety disorder)
Gastroenterology(refractory IBS, Red flags of hematochezia, weight loss, inflammation)
These are just some of the highlightes from his presentation!!!!
Answers Being Found On Cfids And Fibromyalgia- What Benefits For Ill Gulf War Veterans?
No replies to this topic