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Answers Being Found on CFIDS and Fibromyalgia- What Benefits for Ill Gulf War Veterans?
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.
Objective Abnormalities:
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
Neuroendocrine Dysfunction
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
Neuroimaging Findings
Neuronal Hyperactivation in response to stimulation
Abnormal brain metabolites
Cortical atrophy
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)
Urology(interstitial cystitis)
Dentistry(Tempromandibular disorders)
These are just some of the highlightes from his presentation!!!!
Short URL: http://www.veteranstoday.com/?p=49375
Posted by Denise Nichols on Sep 15 2010, With 0 Reads, Filed under Corruption, Gulf War Illness (GWI), Health, Politics, Vet News. You can follow any responses to this entry through the RSS 2.0. Both comments and pings are currently closed.
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Denise, YOU have done a great job for the past 20 years! we met a few times in the 1990′s. i was on CNN’s Larry King LIve twice and i suggested that the gulf war vets were coming down with very similar conditions to all these women and children with CFS, ME, MCSS, FMS, and chronic Lyme..
GWS is VERY similar. Dr. William Reeves, my nemesis at the CDC for 20 years, admitted to a closed door panel in Congress that “:Mr. Hennessy and his group (RESCINDINC.org) were correct early and often: GWS is not just similar to CFS, they are virtually identical!” (circa 1996!) I have tape somewhere where Dr. Reeves admitted to the CBS Evening News about GWS and CFS being virtually identical.
Dr. Nancy Klimas is a REAL hero. she treats HIV and AIDS and CFS and GWS. She told me last year that if she had to come down with a disease in 2010, that she would rather contract HIV and AIDS than GWS or CFS. she said “My HIV patients are hale and hearty, my CFS and GWS patients are quite ill!” We need to get back on CNN;s Larry King Live and get YOU ON THERE DENISE BEFORE Larry retires the end of this year. write to me, and let’s make it happen
it is needed at least he had interview with Major Donnelly and family about his book Falcon’s Cry before Mike died, Mike’s dad a retired Marine and former Ct legislator died too.
Thomas,
Yes email me at DSNurse1@yahoo.com
I remember each and every time we have met. I am indebted to all the civilians re CFS advocates and DRs I have met that have reached out over 20 yrs.
Indebted to other vet groups re Atomic Vets, AO vets, etc…
It has been a frustrating, tedious, tiring, path I have followed for these 20 yrs.
I am bound and determined for us to find answers, the appropriate diagnostics, biomarkers, and appropriate treatment.
It is unbelieveable that so many of us veterans and civilians can be treated as we have been!
I have watched the CFS civilian advocates grow in strength and can hope that Gulf war veterans that are ill will connect with their local CFS support groups.
Denise,
I follow this very closely. For one why isn’t there a clinic specificaly set up for the Gulf War vet, staffed with trained and educated staff. I have been going in to the VA for a very large number of things. I m told most of the time it is my age. well I m about 15 years above the average age of the Gulf War vet now and I believe that it is a very lame excuse. When I asked my PCP about GWI she told me to take a P&C exam because she knew nothing about it nor ay place to refer me to.
I do thank you for a job well done.
That is exactly right, there are too many people dealing with Gulf war vets who really are not well informed. I still can remember the psychologist who gave me a so called Gulf war exam who after hours of questioning told me she did not believe in the Gulf war syndrome. I told her that the exam she gave me did not mean a thing and she did not answer. It was like they, in this case the Miwaukee VAMC, threw a psychologist at me with no background what so ever in Gulf war issues.
DENISE I HAVE SENT NUMEROUS E-MAILS TO THE PRESIDENT,CONGRESSMAN,GOVERNOR WITH NO RESPONSE, WHO EVER READS THE E-MAILS JUST DISREGARDS THEM. WE ARE NOTHING MORE TO AMERICA THAN A PROBLEM. WE SERVED,WE ARE ILL,THEY DO NOT WANT TO HEAR THE SUBJECT. I AM A GULFWAR 1 VET 100%S.C.IT TOOK ME YEARS TO GET 100% AND THAT IS NOT PERMANANT FOR THE REASON BEING THEY DO NOT WANT TO HAVE TO PAY INSURANCE ON MY WIFE.I AM ONLY 44 YEARS OLD AND HAVE BEEN DISABLED FOR TEN SO THAT MEANS IN MY CASE THAT MY LIFE AS I KNEW IT WAS OVER AT AGE 34 AND THE SIX YEARS BEFORE THAT I SUFFERED AND WORKED AS LONG AS MY BODY WOULD LET ME AND THEN SOME.PEOPLE THINK GULFWAR VETERANS ARE JUST LOOKING FOR HANDOUTS,FREE RIDES,WELL I SAY TAKE THESE PEOPLE THAT BELEIVE THAT AND REPLACE ALL OF OUR SOLDIERS IN IRAQ AND AFGAN.. WITH THEM. I WENT TO THE PX AT FT CAMPBELL AND NOTICED THAT IN THEIR SECTION THAT HAS BUMPER STICKERS AND WINDOW STICKERS THEY HAD SOME FOR ALL WARS EXCEPT EXCEPT DESERT STORM/DESERT SHIELD I THOUGHT THEY WERE JUST OUT OF THEM SO I ASKED THE LADY THAT ORDERED THESE ITEMS IF THEY WERE OUT AND SHE REPLIED NO WE DONT CARRY THEM?? WE ARE THE LOST SOLDIERS.
May I make a few suggestions for each of you.
1. Find a local group for CFS and attend the meetings.
2. Write editorials to your local newspapers about your situation… Letters to the editor usually has a good chance to be published.
3. Write and call your local TV stations and ask them to cover GWI, CFS, Fibromyalgia, breaking medical research.
4. Try to find other GWvets in your area, line up a VFW post to host a meeting and publicize the meeting. Share with local CFS groups, go to their meetings and then share your findings with local GW Vets
5. Get copies ready of the VARACGWI Nov08 report get the link for the last IOM NAS study Vol 8 for 2009…get copies to all the VA sites in your area.
6. Ask your congress and senatorial people to review these and start a GWVet group advising your Rep and Senator! Push for the funding for DOD CDMRP GWI
7. Keep your information going to the elected officials at US and State level!!!!
8. Network and find civilian doctors that are looking and seeing CFS civilian patients…get them the same information
9. Make contacts with your state’s medical university hunt down their physicians in rheumatology, allergy, infesctious diseases and then in the hard sciences re Chemistry, biology, etc provide them the same info…Go thru the Vice Chancellor office and find out who on their faculty might be interested in this area….Let them know of DOD CDMRP funding for GWI.
10. let others know contacts you are finding.
11. Search out and make a list of Veteran service officers that work claims be sure they are updated on the reports provide them copies that are highlighted re the medical research findings and the letters VA headquarters sent out on rating GWI claims! Make a list re those that are helpful and informed and those that arent! Get that to all of us.
12. Form a facebook page for your unit you served in and in the notes section provided the information flow. Survey on those facebook pages of those members checking in on your unit facebook page and at any reunion….Do they have symptoms GWI?, Havew they been rated and for what? What are their diagnoses? What tests have they had? Have they found drs or VSOs that are helpful…list them. Have any of your unit members gotten diagnosed with Cancers(types), autoimmune diseases?, ALS, MS, etc? What about any deaths…age of death, cause of death, did survivors get DIC?
13. Each of you can make a difference!
14. Remember to share and network information Communicate Communicate.
15. Keep me info and I will do all I can to document your struggles and findings.
DSNurse1@yahoo.com
If you want to talk by phone just email me…we can do that too!
This isnt just about getting rated this is about getting health answers and help for each of your quality of life health!
Fibromyalgia is real. Veteran or not, it is a nutritional deficiency that mainstream medicine has not discovered. It is primarily due to a magnesium deficiency. The deficiency is cause by poor diet and any diuretic taken, including alcohol, caffeine, speed, crack, cocaine and most medicines over the counter or prescription and high blood pressure medicines.
It will go away completely in a few years with magnesium chloride, magnesium sulphate (epsom salts) and other magnesium compounds.
Read MGWATER.com and you will recognize the symptoms. Mainstream medicine can’t make any money off this so they don’t have a cure. It is a simple nutritional deficiency afflicting most Americans. Drinking ensure will help as the main ingredient is magnesium chloride. Some relief is almost immediate.
You can be well while the doctors and the VA are still “studying” the problem.
Mike
To All Vets with GWI,FM,MCS,CFS,sick children, spouses, relatives: If you want the country (and world) to know about GWI and its relationship to CFS and XMRV, you really must join us on Facebook at:
http://www.causes.com/causes/511536
For those not on FB, a dedicated website will be up this week. We will post it here as soon as it’s operational.
We are raising funds to place a 1/4 to 1/2 page ad in the Washington Post to inform the public of the quality of life issues in these devastating illnesses. This ad will be full of facts, with references and links for more information on the XMRV and 4 other retroviruses like XMRV that are being found in 85% of CFS, and varying percentages in GWI, FM, Autism, atypical MS and others. This is truly an astounding group of patients: we have over 1060 members and $5K in donations in just 7 weeks. It is THE place to be heard; patients vote on the Team Leaders decisions. There’s no place like it.
I was a support group leader for 2 years in a city of over 1.7M; they are a good source of information and support; however, they are limited in scope unless they join a presence on the internet. Our Cause, ME/CFS Worldwide Patient Alliance is bringing all these groups together with the help of our ‘parent’ .org, PANDORA, who already has a center of excellence for neuroendocrineimmune disease diagnoses and treatments (NEIDS) approved by the NJ legislature. We are demanding at least 5-6 more, across the country so patients don’t have to kill themselves getting to the help they need.
Please join our cause! Donate to help if you can…but if not, please join in our discussions and decisions…this will benefit YOU and all our fellow vets!~ (I am a 100% Vet from Vietnam Era) There is exciting news coming up this week that you will all want to be a part of…they tell me it’s a surprise, and secret until announced, but I have an insider that says it’s going to generate great interest and commitment from Members of the Cause. JOIN US!
@ Denise, your reporting and support of us is impeccable; I am astonished and rewarded by your brilliance and exactness of all you do not only for the Vets, but for all of us with these terrible NEIDS. I can’t thank you enough. We could sure use your support at the Causes listed above, and I think you would be welcome in the Admin Team. Please help us help ourselves and others with these too-long neglected diseases. Thanks!
I am a Gulf War Vet, Once treated by the War Related Illness and Injury study Center in Washington DC. Now I have more illnesses than I can count. I have Chronic Fatigue. But I am unable to sleep without help. And no mental illness, other than PTSD and Agoraphobia, to go with it. They have diagnosed me with Fibromyalgia but I can not get in to the VA to see my Rhumatologist to see someone for two months because of the VA running on the same budget for the last 3 years. So I am on no medication to help the pain, and I can’t see anyone till next month. So what do I do?!?
Most VA -PCP dont understand, too little data. VA office Environmental Agents & VA education have minimize the health issues gulf war vets suffer. Why aren’t vets demanding the GWVI-TF to be proactive? All that there is left today is Studies/clinical trials – mostly on PTSD alone. Where is the VA studies on clinics on FMS/CF ? These are the correct VA offices you need to write. Have you read
pgev.blogspot.com/
post-deployment.blogspot.com/