NGWRC News 1

News for Veterans

 

What's New

Update for Sleep Apnea.

Follow the link to learn how to correctly file a claim for service-connected sleep apnea if you also have service-connected PTSD. You must have a nexus first.

 

 

Current Newsdemo

National Gulf War 2016 Annual Meeting &
Informational & Health Fair

We will talk about claimslatest treatments and research.

The annual meeting will be Sept 30th - Oct 1 in Washington DC.

For more information on the meeting read our news link.

 

NGWRC is funded only by donations

NGWRC is a 501(c)3 non-profit organization, and your donations are tax deductible. Our paperwork is on file with the state of Kansas. The NGWRC reserves the right to refuse donations from any groups or persons that views does not support ours.

 

 

 

What's New

 

National Gulf War 2016 Annual Meeting W/ Informational & Health Fair

All Gulf War veterans have a voice in what the National Gulf War Resource Center (NGWRC) sets as its long-range goals and at the annual meeting is when the veterans learn what was accomplished in the last year, what is currently going on and what else may need to be done.  We ask for your input to set our agenda for the next few years. 

Click for the agenda  

Click here for some what we have been doing.

The annual meeting will be Sept 30th - Oct 1 in Washington DC at the Hilton Arlington Hotel (see information below). There is no registration cost to attend the event.

 Learn about latest treatments and research.

 The next time your spouse tells you to quit playing games, you can tell them you’re only taking your doctor-prescribed medicine.  Gaming improves cognitive disorder.   

  • Learn how DNA coding will lead to diagnostics without experimenting with drugs. 
  • The long overdue clinical study on Coenzyme Q10 (CoQ10) is coming.  The study designer, Dr. Nancy Klimas, MD, is scheduled to present at 1:00 PM on 30 September. 
  • Georgetown Associate Professor will talk about a proper diagnosis of Chronic Fatigue Syndrome (CFS).

We will talk about claims. 

  • Importance of a good lay statement. 
  • Causes for claim denial. 
  • How to write a good Notice of Disagreement (NOD). 
  • What to do in a Decision Review Officer (DRO) meeting. 
  • A claim is more than just one regulation. 
  • How research helps (or hurts) your claim.

 ROOMS: 

The block room rate is $109 per night.  The Hotel requires registration before September 21st to take advantage of the block room rate.  This is the address to make your reservation online:

http://www.hilton.com/en/hi/groups/personalized/D/DCAVAHF-NGW-20160930/index.jhtml?WT.mc_id=POG 

To reserve your room you can call Hilton Arlington Hotel directly at 703.812.5113 and give them the NGWRC Gulf War Meeting group code of “NGW” and your arrival dated of 30 September. You can also call the Hilton reservation hotline at 1-800-445-8667 provide group code NGW and the arrival date and hotel name of “Hilton Arlington Hotel in Virginia”, please note the address.

 

Group Name:

NGWRC Gulf War Meeting

Group Code:

NGW

Check-in:

30-SEP-2016

Check-out:

01-OCT-2016 can be the 2nd

Hotel Name:

Hilton Arlington

Hotel Address:

950 North Stafford Street

 

Arlington, Virginia

 

22203

Phone Number:

703-812-5113

 

The NGWRC has a donation to reimburse room expense for about 10 rooms with veterans staying the night of September 30th.  One of the requirements for reimbursement will be attending the events on both days’. We reserve the right to deny the reimbursement of rooms. Some veterans have been approved now due to their support work with the NGWRC.

 

2016 Health and Information Fair sponsored by the NGWRC Day 1, 9-30-2016

                Lunch will be on your own

The meeting room will be set-up and NGWRC director will set up computers.

12:45 pm to 1:00pm

       Gathering in meeting room.

1:00 – 2:00 pm

Fibromyalgia

Getting it right

Presentation: Nancy Klimas M.D.

Nancy is internationally recognized for her research and clinical efforts in multi-symptom disorders, chronic fatigue syndrome/myalgic encephalomyelitis, Gulf War illness, Parkinson’s disease, and fibromyalgia.

2:00 pm to 3:00 pm

Gulf War Illness Training, for  NGWRC staff

3:00 pm-3:15 pm

Break—check into rooms.

3:15 pm to 4:00 pm

Coming Treatment and diagnostic  tools

Presentation: Dr. Victor Kalasinsky PhD

4:00 pm 5:00 pm

CFS - Getting it right

 Presentation:   Dr. Rakib Rayhan MD-

Rakib works with Dr. James Baraniuk at the Georgetown University Medical Center  At the Chronic Pain and Fatigue Research Center we are dedicated to improving the lives of our patients suffering from Chronic Fatigue Syndrome (CFS), Gulf War Illness (GWI)

Q&A

Times are approximate and subject to change without notice.

The views expressed here are those of the presenters and do not necessarily reflect the official policy or position of the NGWRC, Department of Veterans Affairs, the U.S. Government, or any other entity.


 

            2016 Health and Information Fair sponsored by the NGWRC Day 2, 10-1-2016

8:45 am to 9:45 am

Breakfast on your own --- Welcome to October

10:00 am to 10:30 am

Keynote Addresses :  Department of Veterans Affairs

Waiting on confirmation letter as to whom

10:30am to 11:00 am

80% Denial Rate

What the NGWRC is doing.

Presentation: Mike J. has been the side kick to the Present Ronald Brown in working this issue. Going to some of the meetings this last year.

11:00 am to 11:45 pm

How to prepare a Gulf War claim.

Presentation: VA accredited Claims Agent

The key in a section 3.317 is starting out with a well-grounded claim.

11:45 pm to 1: pm

Lunch on your own

1:00 pm to 3:00 pm

How to file a Gulf War NOD

Presentation:  VA accredited Claims Agent

When to use research in the claim.

3:00 pm to 3:15 pm

Break

3:15 pm to 5:00 pm

    The BVA - remands.

  Operation Forgotten Warrior

 Q&A

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

             

 

Times are approximate and subject to change without notice.

The views expressed here are those of the presenters and do not necessarily reflect the official policy or position of the NGWRC, Department of Veterans Affairs, the U.S. Government, or any other entity.

 

This is our "Operation Forgotten Warrior II"

 

There is a different website the Forgotten Warrior II website

 

The VA needs to regain the trust of Desert Storm Veterans by altering how they take care of them.

We at the NGWRC have some ideas about what can be done as the first few steps to facilitate this change. 

Currently, the NGWRC has to help Veterans educate their doctors about the War Related Illness and Injury Study Center (WRIISC), about the presumptive illnesses to their service, and in some cases about the different exposures we had during our time in the service as apparently the physicians are unaware of even these basic things.

True the VA has a website on this and a training guide for the PCP; but it does not mean that the PCP will look at them. Even the veterans are still learning about these same issues with the help of the NGWRC and our different outreach programs.

HOW TO SOLVE THE PROBLEM - OUTREACH

Simple outreach is one of the easiest first steps to solve any problem.

Remember to keep the readability down to about the 8th grade level.

  1. Signs in the VA and CBOC
    1. Most cost effective
    2. Informs veterans and PCP
    3. Limited outreach
  2. Pamphlets
    1. More information than signs
    2. Placed in all waiting areas
    3. Can be handed out at events
    4. VSO and others can give out
    5. Does not need to be updated as much; but easy to update
  3. Gulf War Review----This is sent out to the Veterans now so we did get it done...

IMPROVE VETERAN CARE

The veterans just want their health problems addressed by doctors who did the latest training in their illness. Even after getting diagnosed from a non-VA doctor they cannot get care in the VA some times.
Veterans have to show Doctors and their VSOs what Fibromyalgia (FM), Irritable Bowel Syndrome (IBS) and the other presumptive illnesses are. Often doctors have not heard of them or do not believe in them. Many of the VSOs do not know how to even do a claim on them correctly leading to claims denials and more frustration for the veteran.

HOW TO SOLVE THIS

Only by having some good information for the PCP to train with and then making them go over it can it start to make a difference, we hope.

We understand that we are a small percentage of veterans in the VA and in the beginning of this we were tracked with a sticker on our paper files. It may be time to go back to some simple things that may help solve the health care problems.

              1. Place Desert Storm Veterans on the same team /teams
                1. Only if they have the same problem i.e. 3.317
                2.  Only if Doctor is trained & believes in GWI
                3. Only if Team is trained
              2. Work with the WRIISC
                1. WRIISC is a tool for PCP and the VAMC
                2. WRIISC treatment plan should be followed
                3. All healthcare providers should know of WRIISC
              3. Improve the health care records
                1. Report all health problems not just the worse one into the record
                2. Insure information is right, change mistakes when vet points it out
                3. PCP needs to listen to  what the veteran is saying talking of their problems
              4. Improve Gulf War Registry Exam
                1. Some places are not giving it
                2. Phone/email calls get returned
                3. Examiners have passed the training on gulf war illness.
                4. Make sure follow-up letters are sent out as per the regulation
                5. Use data to look for presumptive illness
                6. Make sure the CBOC know about the exam and where to refer the veteran
                7. All VAMC are giving the same standard exam
                8. The right paper work is sent, (I am not a not a Vietnam vet)

 PRESUMPTIVE ILLNESS

A migraine and tension headache secondary to Fibromyalgia is a problem that is simple to solve. The science shows Fibromyalgia does causes them the CRF does allow for it why is it not one?

Most studies show migraines at about 2.5 times the rate or more for GW veterans that were deployed as compared to the non-deployed.  This is not factoring the rate of fibromyalgia.  Kansas study, Sea Bee study, Ft. Lewis study on OIF vets

Today even more veterans are being diagnosed with Migraines and or tension headaches and having their claims denied for the two.

All studies do show that GW vets have a much higher rate of headaches and no one really knows for sure just what causes headaches. A diagnosis of a headache is just placing it into type.

GERD is at a higher rate in desert storm veterans, this should be looked at again; but with only new data, not old data, to see about making it a presumptive illness.  Looking at old studies is not a standard way of working, if we over look those getting sick now or starting to come into the system we have a false sense of what is really going on and the veterans will know.

One should be careful of using military studies. In the military we did not go to the hospitals for this GERD type of problem, we had BN medics in fact we used them for most all types of problems. Officers and NCOs just went for OTC treatments and off post to keep things out of our records. It could hurt our promotions. This is why on a survey we are always healthy no matter what.

This is our starting points. Trust needs to start someplace. To regain trust is very hard.

 

 
 
 

 

 

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