Saturday, March 26, 2011

Part 2 GWI and CFS/ME Research Update Conference

Part 2 Continued....
Chronic Fatigue Syndrome
In Chronic Fatigue,there is increased chondroitin sulfate in cartilage and connective tissues. There is also increased Aurora A which can lead to mitosis and malignancies like cancers.
In Gulf War Illness, the network is being pulled in several different directions at one time. Again, Gulf War Illness is not like Chronic Fatigue. It is more connected and it is chronically overactive in the body. All the major systems of the body are on high alert and overreacting. I found this encouraging as it could be the reason why i have fibromyalgia, complex Gulf war illness, hypertension, diabetes, systemic lupus erythmatosis(SLE),chronic diarrhea(Saddam's Revenge),chronic pain,sjogren's syndrome,female disorders and sterility, premature menopause, miscarriage,chronic lymph node involvement, chronic urinary tract infections, shingles,continuous findings of masses and tumors in the breast,kidney,uterus,pancreas,swelling of the spleen, need i go on? I am exhausted just having to write all the illnesses i deal with on a daily basis.
In Gulf War Illness, there is distinct porphyrin (hemes) and ceramide (apoptosis)signaling. All of the body's networks, highways, and biways are more active in Gulf War Illness. Ceramide is THE hub among hubs in the body. There is too much immune B cell activation, angiotensin is up(this could explain the arrythmias, hypotension, hypertension that is active in Gulf War vets and CFS. That alone is why it is important to monitor your blood pressure before, during and after exercise and especially important here in hot South Florida to keep fluids going to keep your blood volume up. The hypothalamus, pituitary gland, the adrenal glands and ATCH are super important in energy regulation in the body. You must really try hard and keep a log book of your sleep, stress, blood pressure, pulse, etc, so you can know the BEST Time for YOU to expend some energy. You must try to figure out the waves of energy and other symptoms you feel to optimize the best treatments,exercise times,etc,. for you and only you.
On a final note, More healthy Desert Storm veterans ,including NonDeployed Gulf War Veterans are needed asap to get in some of the studies so the work can continue to identify possible treatments, therapies, and medicines that might make living a little easier on us. Donations are needed to help continue the work too, whatever one can give. For the couples study, call 305-355-9200. Again that is a study conducted by televideo. You can donate to the Morton fund for Chronic Fatigue at the University of Miami or you can donate to the Southern VA Foundation for Research at the VA. Dr Klimas needs healthy vets and sick vets for studies in her practice at the VA. She also consults with vets by televideo conferences. You can write her a letter at the VA :Dr Nancy Klimas,Veterans Affairs Medical Center,Dept of Medicine (111-1), 1201 Nw 16th st, Miami Fl 33125. You can also send an email to Fanny Collado at In your communication, please indicate if you have CFS or GWI,also if you are a vet or active duty.
P.A.N.D.O.R.A., a 501(3)c charity organization has funded alot of these studies. It was founded by Marly Silverman, a patient herself and a tireless advocate for those sick with CFS,Lyme, Fibromyalgia, and Gulf War Illnesses. They also accept donations and need volunteers to help lobby the government,Congress on May 12,the International Awareness Day for Neuroendocrineimmune Disorders. Please help us on that day to advocate for all of the people affected by these illnesses.
Please join us.

Disclaimer: I am not a medical doctor. I am a very ill sufferer of multiple neuroendocrineimmune chronic illnesses of the past 20 years since Desert Storm. I have done extensive research, read journals, written various doctors by email, etc,. Please view the video of the conference when it is posted on If you have any questions, please send me an email at

I would like to thank all the participants of the studies, Dr.Klimas, Dr Broderick ,Marly Silverman and everyone else who is reading this for your help and support.
I am looking forward with hope and belief that in the next 1 or 2 years, one of these doctors will have some answers and things will turn around. After all,i have a 50th birthday in 2012.
Again, thank you so much for reading this.

There's a Light at the end of the tunnel for sick Gulf War Veterans

Today i attended a conference at the Miami VA hospital entitled:"GWI and CFS/ME Research Update". It was held to give an update on all the research completed and to inform the audience of future research plans. The principal player for Miami is Drl. Nancy Klimas, Director of the Center for Multidisciplinary Research on Gulf War illness and Chronic Fatigue Syndrome. A video was filmed and will later be presented at
I did notice there were very few regular VA doctors there. I was disappointed because i feel the primary care doctors and other doctors on my team or anyone else's team should have been there to learn more about it.
In introductory remarks, Dr. Nancy Klimas said that anyone suffereing from Gulf War Illness or Chronic Fatigue Syndrome needs an immunologist on their team. Gulf war Illness involves many body mechanisms and affects the following areas or necessities: clinical ( a good primary or internist),immunology,endocrine,autonomic nervous system,sleep, exercise physiology,PNI, and genomic medicine. It has so many subgroups as you can see.
For those of you who may be hearing about Gulf War Illness for the first time, 700,000 American troops deployed to Kuwait,Iraq,Saudi Arabia, and other Gulf nations. Other nations also deployed and many of their troops also suffer with this illness. These American troops were exposed to biologics(chemicals)like sarin gas from the Khamisiyah dump blowup in March 1991. They had to breathe in smoke from the Kuwaiti oil fires that spread far and wide over the area. They had to deal with major sand storms, all kinds of desert insects, bugs, scorpions, nasty living conditions. Many troops in Kuwait had oil dripping on them or over them when they trying to deal with the disaster of the oil wells being blown up by Saddam. I myself as an Air Transportation Supervisor breathed in lots of jet fuel exhaust overseeing the loading and unloading on troops and baggage at King Abdul Aziz air base in Dhahran, Saudi Arabia.Also the major stresses of the situation had a huge psychological effect on Desert Storm Veterans. That psychological aspect is often referred to as psychoendocrineneurology. Just like CFS/ME,GWS is a neuroinflammatory disorder.
An eight year study of Gulf War Illness concluded recently. They used several different methods of trying to identify what exactly is involved and what makes it worse or better. For further in-depth explanation, please keep checking the CFS knowledge website for a detailed discussion. It should be up within the week. They used exercise in the study where the Vet would exercise, have blood drawn, rest 4 hours, and have blood drawn again. They studied a microarray of genes, longitudinal biomarkers, Dynamic Modeling (DDD),and murine retroviruses.
In the twenty years since Desert Storm, there has been no NATIONAL study of Gulf War Illness or CFS for that matter. These illnesses are just as debilitating as heart disease like congestive heart failure.
ONE THIRD of the 700,000 American troops deployed for Desert Storm are sick with Gulf War Illness or components of it. I,myself, have one of the most complex cases of it my doctor has ever seen. Very few women were deployed to Desert Storm but out of those, they have a 16 percent higher chance of being sick with Gulf War Illness.
Like CFS, Gulf War Illness has the following components: fatigue,depression,arthralgia,myalgias,sleep disturbance,cognitive dysfunction,diarrhea(or as i like to call it, Saddam's Revenge),asthma or COPD-like symptoms, chemical sensitivity, and allergies. Fibromyalgia, which affects 1 out of 4 Desert Storm veterans has symptoms that overlap Gulf War Illness and Chronic Fatigue Syndrome.
One of the possibilites that even i as a layman pondered is that something, the vaccines or the oil smoke possibly activated genetic predispositions to immunologic disorders like systemic lupus(which i have), sjogrens syndrome(me), rheumatoid arthritis, diabetes (me),etc,. There was a trigger event or events. The meidators(organ systems)then worked like a domino effect. First the immunology of the veteran was affected, then the endocrine(hormones)system, then the neuroendocrine system, then our sleep,then our psychosocial affectations or reasonings,(depression,anxiety,etc,.)then our bodies had a viral reaction which appears to be triggered most likely by possibly being injected with Human Herpes 6 vaccine. Also another vaccine which most likely was a trigger event was the last vaccine i received , the 21st vaccine was 2.5cc of gamma globulin in each butt cheek. This is the one that I think started it all. I asked the panel what gamma globulin would do to our immune system and it's an activant. Here's the shocker: it is a manmade acquired immune defienciency virus similar to but NOT HIV. Gulf War Illness is NOT HIV. AFter our bodies had a viral reaction and the persistence of everything previously reacting in our systems,we got Gulf War Illness.
Dr. Lina Garcia conducted a Good Day Bad Day Study. She studied Natural killer cells which are the body's first line of defense. She studied the patients when they were having a good day and when they were having a bad day by checking their bloodwork and looking at the NK cells and neuropeptide X, a neurotransmitter. it connects the immune system to the autonomic nervous system. This results in chronic immune activation. This is the key to understanding the difference between Gulf War Illness and Chronic Fatigue. Chronic fatigue SUPPRESSES the immune system. Gulf War Illness is a result of OVERACTIVATION of the immune system. Although the two diseases have similar symptoms, they are two different unique illnesses. Of course, a veteran could have both of these illnesses most likely.
Cytokines were also discussed. They ar proinflammatory and antiinflammatory. Excessive cytokines cause fever, fatigue, and pain. Interleukins are also involved in the immune system. One of the key interleukins involved in Gulf War Illness is IL-5. It causes chronic complex disorders in the body.
The next speaker was Dolores Perdomo, PHD. She discussed a CFS Telehealth Study that was conducted. They swabbed the patient's saliva to check the cytokines.A SMART study was conducted and still needs more volunteers. In this study, they used cognitive behavior therapy to deal with emotions, stress, and stress management to see if that would deliver any type of relief. The health status of the patient was checked and that included checking the immune regulation. They took a good hard look at the quality of life of the patient. There is another study being conducted for couples.This study is called the Chronic Fatigue Syndrome Videohealth Study. you must have CFS and have a partner willing to participate between ages of 21-75 and you must speak,read, and write fluent English. You receive 100 per couple for your participation.
The keynote speaker was a chemical engineer/research scientist, Dr Gordon Broderick. I would kiss the ground he walks on. He is a godsend for sick Gulf War Veterans. Finally, after 20 long years of suffering and pure hell, i feel hopeful that in the next year or so there are going to be real answers and medicine to help us deal with this horrible, debilitating and disabling disease.
Dr. Broderick's subject was "Shifting Immune Conversations: A Systems Biology Approach to Gulf War Illness and CFS/ME. Just seeing that projected on the screen was encouraging to me. In a circular pattern, there are 3 major components: The Brain and Nervous System,the Energy Utilization,altered immune communication and altered immune homeostasis. High levels of TH1 and TH7 were found along with TH2 which causes allergic inflammation. There is a diminished Natural Killer Cell (NKCC) responsiveness to IL12 and LTa. This is similar to what is seen in latent viral infections like shingles or herpes simplex 1 or 2. The immune messenger proteins, IL-6 and IL-10 make the "engine hotter", so to speak. Everything organwise, systemwise,cellwise heats up and acts up, if you will. Neurotransmitters in the brain are also affected like dopamine,norepinephrine, and epinephrine. This is usually why serotonin uptake inhibitor drugs like Paxil or Prozac don't generally work in the brains of sufferers of CFS/GWI. Check your psychotropic meds and talk to your mental health provider.
Again i am not a doctor but i have done 20 years of research on my own reading lots of studies and medical journals and reading medical textbooks so i could advocate for myself and help others get treatment for this horrible disease, Gulf War Illness. No two sick Gulf War Veterans are going to have the same symptoms or be alike. Here is another piece i had found so fascinating:"The immune system is more unique to a person than a fingerprint." That is fascinating to think about. The doctor advised to be careful with immune therapies or anything that is supposed to help the immune system. It could result in septic shock and you could do if you overdo it.
In Gulf War Veterans,there is suppressed immune metabolism communication. Immune communicators like L-DOPA,tyrosine, and phenlalanine.These are all involved in the biochemistry of stress response in the human body.
A graded exercise study in Gulf War Veterans was also conducted. They looked at immune signaling proteins, stress hormones,immune cell populations,and gene expression in the immune system. They concluded that the immune system in Gulf War Veterans is disorganized. There are more resources(activation) but the body is less efficient to respond to physical challenges. This is why you may golf on Friday and then you may find yourself in severe pain and unable to do anything 10 days later. There is a massive downward effect in the immune system of Gulf War veterans even just four hours later in some of the veterans involved in the study. IL-1 ,involved in fatigue and concentration was high. There also was an increased vulnerability to hydrocarbon exposure. This might explain the chemical sensitivity some Gulf War vets have to gasoline, oil and related products. The name for it is methylnapthalenedegradation. The key word there is napthalene. This most likely was caused by the oil dripping all over the veterans, the oil raining down on them in Iraq and Kuwait, breathing in the jet fuel, the smoke of the Kuwaiti oil fires burning, etc,. This degradation caused platelet activation and increased ATP processing.