"Researchers say they have found physical proof that Gulf War illness is caused by damage to the brain — and that proof may ultimately help civilians who suffer from chronic fatigue syndrome and fibromyalgia" the byline says, as you will see below, to this most interesting new finding out in the mainstream media recently.
My concern now is what is hinted at in this synopsis of the findings in this USA Today article: It seems obvious to me that the thinking here is "the brain shows damage, we finally measured something we could see", but the researchers aren't going to say 'but what caused the brain to have this damage". Perhaps the illness caused the changes in the brain. Again, the proverbial chicken and egg.
I recall reading in 1994 or 1995 about Gulf War Syndrome, as it was called back then, and it's symptoms made me think"it sounds just like chronic fatigue syndrome". Years later it was determined they were the same disorder, just as I thought.
To me, there are so many experts out there in the US today who have contributed much to the fund of knowlege about what causes chronic fatigue syndrome, I hope that everyone who has a significanat voice in this "fight" will come together and collaborate. Whether it is with military veterans or veterans of other occupations and vocations living and working in the United States or other places in the world, coming together on this to really 'get some conclusions' and treatments that conventional programs will pay for is going to be very helpful to basically everyone concerned. There are many people who have reversed these disorders, but they tend to be people to think outside the box, study outside the box, and pay for things that are outside the box of what insurances or programs such as the VA pay for typically.
Having been one of the millions of civilians in the US temporarily debilitated by CFS (chronic fatigue syndrome) in 1989 (at the age of 29, working for a major U.S. University on a Federal research project which expanded and build a new building with much VOC outgassing after I'd had an immunization in 1981 which was proven in a class action lawsuit to have caused 5% of adults who received it to have health problems after), I can only say that there are strength in numbers. If we can start seeing how there are many types of Americans who come down with these conditions, and find the similarities in their experiences, it will likely allow for more complete reasons and treatments to be found, and likely in faster time because of less 'going off track' as to 'why'.
By properly finding and defining a problem, it can then be solved, and I suggest to all people that we dedicate energy and time (and money from the entities which do that kind of thing) to collaborate and stay connected and informed as we move forward.
Allopathy has a history of finding ONE cause and convergent thinking; environmental illness has multiple facets and requires divergent thinkers to ultimately be effective in solving the puzzle. But this is a great step forward, though I'm frankly shocked it took this long for a study like this to be done and I am not a bit surprised by the results found. When I was doing internships to become an OTR in 1995, I was educated by a Vietnam veteran, a former officer who had PTSD, that there were areas of the brain shown on MRI to have been altered when there was a diagnosis of PTSD. Furthermore, they had done quite a lot of studies to tease out why it was that some people in the same situations would get PTSD and others would not.
I'm sorry for each person whose life has been challenged by this frustrating disorder, and our veterans are certainly no exception. It seems to me that there are a lot of 'datapoints' that researchers have been studying and the weaving of those together to concusions and treatments has not been very effective. I'll remind people that I've created a topic on Lumigrate in 2013 related to 'fixing your mind by healing your body' (based on The UltraMind Solution book by Dr Mark Hyman as well as additional information from Wheat Belly by another MD (a cardiologist) who got to focusing on foods and specifically wheat.
I relate the overview of information about the VA studying gluten and diet on mental health back in the 60s, with NIH substantiating the conclusions and even another study in England finding the same thing: 50% faster time out of the hospital for those Veterans with the schizophrenias if they were provided a gluten free diet when at the hospital for mental health treatment. Yet when I was at the VA as an intern in 1996, having found for myself in 1995 that the mysterious condition I had (which was later diagnosed as fibromyalgia) was greatly helped by a gluten and casein-free diet, I was shocked to see the diet that was provided to the veterans -- it basically followed the "food pyramid" and included dairy and wheat among other things that were well-known at the time in more progressive circles to be problematic to wellness.
It's almost as though there are reasons for not allowing the information about how to simply and cost-effectively reduce or cure illness are not gettiing to take root for some reason. I hope the connectivity that we now have through the Internet and the number of consumers and providers using it will allow the people who want to be cured to finally get the information and treatment provided by their hospitals, clinics, and medical systems (including insurances paying for the expertise to help them.)
Through the focus on the 'group' the veterans are, it will help us all. Thank you for your service AGAIN!
I found this on the CFIDS Facebook: Dr. James Baraniuk and Georgetown Univ. colleagues studied 31 chronically ill Gulf War veterans and 20 sedentary, healthy controls using functional MRI testing. Gulf War Illness subjects had significantly correlated fatigue, pain, hyperalgesia and increased axial diffusivity in the right inferior fronto-occipital fasciculus area of the brain, a potential biomarker for Gulf War illness that has implications for ME/CFS. Full text at PLoS ONE:http://bit.ly/YxeLgv [2]
Media stories:
NBC News: http://nbcnews.to/14s5p6Y [3]
USA TODAY: http://usat.ly/ZTlpKE [4]
Air Force Times: http://bit.ly/10f83HB [5]
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate [6] and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!
Links:
[1] http://www.usatoday.com/story/news/nation/2013/03/20/research-ties-gulf-war-illness-to-brain-damage/1982817/
[2] http://www.facebook.com/l.php?u=http://bit.ly/YxeLgv&h=qAQEzHHT9AQEJmHcixZgVTLwrRqWzvzhyyc19F8CL34s_Eg&s=1
[3] http://nbcnews.to/14s5p6Y
[4] http://usat.ly/ZTlpKE
[5] http://bit.ly/10f83HB
[6] http://twitter.com/lumigrate
[7] http://www.lumigrate.com/forum/fmri-studies-brains-veterans-gulf-war-illness-finds-cause-or-it-symptom#comment-2553
[8] http://www.lumigrate.com/crss/node/831
[9] http://www.lumigrate.com/blog/911-gulf-war-syndrome-fibromyalgiachronic-fatiguemcsptsd-commonalities-and-commiseration-respec
[10] http://www.lumigrate.com/node/831/edit
[11] http://www.lumigrate.com/node/831/track
[12] http://www.lumigrate.com/users/mardy-ross
[13] http://money.cnn.com/2011/09/02/news/economy/911_health_insurance/index.htm
[14] http://www.lumigrate.com/forum/fmri-studies-brains-veterans-gulf-war-illness-finds-cause-or-it-symptom#top
[15] http://www.lumigrate.com/user/login?destination=node/2079%23comment-form
[16] http://www.lumigrate.com/user/register?destination=node/2079%23comment-form
Comments
9/11, Gulf War Syndrome, Fibromyalgia/Chronic Fatigue/MCS/PTSD; Commonalities and Commiseration Respectfully
It struck me, when watching a show on CNN about the women of 9/11 over Labor Day weekend as the 10th anniversary of 9/11 approaches, the similarities between the stories they were showing of people who had been responders at the site and well at the time, who now have chronic illness, and the people I 'serve' through Lumigrate. My work as an occupational therapist, my years of being involved in communities and circles of people I know personally, and interactions with thousands of people through facebook over the years, who I proudly know are supporters and followers/users of Lumigrate and have fibromyalgia and related conditions have allowed me to see these similarities, just as in the past Gulf War Syndrome clearly was akin to the CFS I new well by that time.
Why would that be? I think this picture is worth a THOUSAND or MILLION perhaps BILLION words:
One key difference, the majority of responders are men and women are the minority and I'm happy to see being honorably given tribute through TV shows, books, media coverage and related Internet blogs, such as this one. With fibromyalgia, the majority of known cases are currently women, and while within both sexes there are MANY more people on the continuum of symptoms of chronic fatigue/fibromyalgia who are undiagnosed and sometimes unaware the peril they are in, men sadly win the contest of most overlooked with this diagnosis. My father was one of them; never diagnosed though one of his medical providers I spoke with who had spent a great deal of time talking with him agreed with me. When he died a year ago, we all had our initial thoughts and mine was"He is finally out of pain." I was the only one present who had that impression: It impressed upon me how you truly best understand chronic invisible illness when you've experienced it personally. The longer the 'better'. I've only had 20 years of pain, I can't imagine being almost 90 years alive and having been in pain most every of those days. Growing up with that hardened me in a way that has been of much short-term benefit as a person with chronic pain and as a professional working daily with people experiencing incredibly difficult conditions. And it likely contributed in many ways to my developing similar; likely it's a combination of nature/nurture (inherited genes and environment/learned behaviors). I've worked very hard since the time I turned 29 on unraveling my 'sweater of illness' and making a ball of yarn and knitting a new reality. There naturally are limitations and complications in that, but I persevere. I hope that will be the case for ALL those affected directly and indirectly by 9/11. Those of us with a trauma background with PTSD-type aspects, adverse childhood experiences, etc. are going to have a different response to what is focused in the media this week as we honor and focus our attentions on the tenth anniversary of 9/11. There is much to learn being presented and I'm going to present my take on it here. Thank you for being with this and putting in the time and energy to read about this complex interrelationship as I see it and present it to the benefit of increasing understanding and knowledge.
Recently, a close friend's son was in a very bad vehicle crash involving flight for life and i was very concerned as this is a young man whose birth I was 'support staff' for. When she texted the next day that he'd been able to be taken home to recover but was in a lot of pain, she said she was fine, just heartbroken. I didn't understand why her heart would break over a wrecked vehicle and a son who 'had angels cushion the crash' and was home so soon! She's not used to being around loved ones in pain! That was a powerful moment for me in understanding the depths and extent that hardship has played on me. I hope my story here today helps to guide others who have only been ten years in the position of being surrounded by the mayhem that occurs when your life goes from having chronic WELLness to chronic ILLness, and in particular when tragedy and stressful situations are part of the picture
Having been dealing with these types of conditions directly and indirectly through my family for 51 years now, with my personal symptoms now tracking back to before birth, birth and all sorts of things that contributed as my young body/mind/spirit moved forward in the 1960s (many toxins 'they' didn't know were bad or there hadn't been enough peer pressure put on people, such as smoking around children), I have a keen interest and dedication to this 'core issue'/ whenever I see the overlap of Gulf War veterans, World Trade Center responders/workers, and the MILLIONS in the United States and likely BILLIONS in the world/on the Earth today 'on the continuum' of related chronic illnesses. I hope everyone starts connecting the dots! It's plain as day to me. So I hope the 'scientists' catch up with it, the many agencies and governments, support groups and people UNITE and make CHANGE. This is the opportunity we have in this era we are in -- as the movie Network many years ago showed in the famous scene "I'm mad as hell, and we're not going to take it any more."
Repeatedly, in stories about men or women of 9/11 who spent time at Ground Zero, I see the common threads with what I have experienced in my personal journey with chronic illness and those I work with and consult with:
In the case of those involved in 9/11 as workers, it took the better part of a decade with a highly visible and emotionally powerful case (they protected and rescued when we were attacked) to get funding and a comprehensive treatment center to help them, which I am very pleased to see for them; ironically, it incorporates all the things that people with CFS/FMS frequently experience as part of their symptoms and are often overlooked, dismissed, and un(der)treated but does NOT include cancer as at the time of the Federal legislation funding this important help to our heros, there was not significant evidence of increased cancer risk.
However, that changed last week with research published in Lancet showing a marked increase in firefighters who worked / were exposed to Ground Zero; the EPA had monitored and stated the levels of compounds known to be toxic and harmful were not to be concerned about. Sadly, this was not a suprising part of the story. Actually, none of it was surprising to me, it all made sense and it's sadly the surprise that our 'powers at be' haven't seen it the way I would imagine many of Lumigrate's readers with educated backgrounds related to chronic illness cause/effect/treatment viewing these words right now are not at all surprised.
All of this can be found at the following Link at CNN (below's one link to get you started), which I encourage everyone to go and read/watch and then most importantly think and then spread the word in whatever ways you see fit this week. Naturally, we've made it easy for you to Print this, Email and as always you can simply copy and paste the link to this blog onto your facebook, email it to people you think of who might be interested in this whether they be responders, chronically ill, or providers of services to medical consumers/patients.
May we realize how much we have in common and how collaboration and activism can go far to advance everyone's awareness and hence solutions for ALL of us. I've many times said that my multiple chemical sensitivity symptoms were handy for people and they should hire me out and put me in a cage in a yellow canary suit!
... it's better than letting 
be your operation point all the time; humor is a powerful tool for coping I have fortunately been blessed with, but increasingly find harder to access because of the extent and time mired in the 'muck' I am writing about and sharing here in it's briefest complete synopsis today. (And hence, HUMOR is included in Lumigrate's podcasts and forum content.)
I hope that EVERYONE, no matter how well or how unknown personally we are who is on the continuum of CFS/FMS or knows someone who is, or is concerned with cancer, realizes that there is MUCH with integrative medicine which addresses and reverses and frequently solves these seemingly unrelated conditions. But they ARE related... why? They deal with the immune system and the body/mind/spirit WHOLE of people, and we're being bombarded by toxic chemicals, people, stress, etc. Again, look at the picture, above -- ....
My severe case of chronic fatigue that I experienced the 29th summer of my life occurred shortly after I'd been bathed at work by a lot of toxic chemicals after moving into a new and cheaply (government) constructed building to house the growing research program I worked for at Colorado State University supporting research being done for the National Park Service Air Quality/Visibility Monitoring program. "Our" work, ironically, lead to the Clean Air Act Amendment of 1990, which overall has benefitted everyone's toxic burdens through what is put into the air by industry, in particular related to coal-fired powerplants.
The reason I fell ill and none of the other 25 or so who were in the addition/expansion building sheds light on why it is that some of the people at Ground Zero are not being seen in the media about related health problems and the majority are not (thankfully for them, 'commiseration' and respect to those who are): I already had a toxic load on my body/mind/spirit that had come with me from before birth, during birth (traumatic birth), toxic exposures because of not one but two of my primary caregivers being smokers and having small houses with stagnant air flow, immunizations that contained mercury (some still do by the way), many amalgam fillings in first/baby teeth ... just like millions and millions of others in the US, most of whom did not have chronic illness but today we are looking at a 50% chronic illness/wellness mix. That is staggering.
I believe also a genetic predisposition or even more direct inherited 'stuff', as my father had a very extreme case of chronic fatigue syndrome his first semester of college. I am appreciative of my ability to sense the future and my decision to not have children, though there are many times I know I am the 'odd woman out' for not having had children and now have no family as a result of the all to frequent outcome of chronic illness over time in families. I respect and appreciate what I had in the past and look forward to the future and embrace the present and continually battle to make improvements in my future. I hope I'm getting really good at it by now! I believe that Lumigrate's ongoing success is my reward for the years of understanding these things from both a personal and professional level as an occupational therapist working with people with complex medical issues, which fortunately or unfortunately are now my 'specialty'.
There is still more to discern from research about chronic illnesses that continues to come to the surface but has to have the 'source' considered; there are many 'vested interests' at play today in what is being presented on the Internet related to these and it takes experienced filtering by the team that continues to grow with Lumigrate to help with that and bring YOU the most valid, progressive information narrowed down and presented for YOU to decide from there what's right for you to believe and act upon (or not). I hope people connected with 9/11, the VA/veterans organizations 'stumble upon' Lumigrate's information this week; eventually I plan that the information will get to them through my hands but I only have limited time, energy and money just like everyone else so we rely on YOU to be a virtual army of marketers for Lumigrate. If you have questions about how you can help, please Contact Us and I'll be happy to read your message.
I've since found much recovery through a combination of conventional medicine (ConMed) and complimentary and alternative medicine (CAMed) over the years, and continue to work for my own health on a daily basis. In my case, it was the 'accumulation' of things, which I think are brilliantly presented in the video that's been on Lumigrate since the day we launched -- free / $0 to invest in downloading, 20 minutes to invest in time watching, and energy involved in sitting and watching / thinking -- I hope YOU click on the Video tab and watch the snippet and decide if you feel it would be of benefit to you or someone you know.
I've since had heavy metals testing and it reveals a burden of mercury from immunizations and a load of amalgam fillings in my first'/baby teeth, lead and cadmium from a family member's second hand smoked I was immersed in for thousands of hours every year for the first 18 years of my life and hundreds more after; I'm still very sensitive to cigarette smoke and it affects me aversely and changes how I lead my life from time to time. I had a heavy burden on me from "issues" placed upon me with a dysfunctional family I'd married into (health problems of husband/father which lead to behaviors of the child who was living in our home and my partial responsibility), as well as the one I originated from. I divorced once I understood the repercussions on my health of being immersed in toxic people; as the saying goes 'the issues are in the tissues".
I have much work to do with Lumigrate at this time, and I have the usual $500/month for insurance, ideally, when I can afford it, just like anyone paying for insurance these days, plus the costs for things ConMed does not pay for through insurance which are the 'secret' to my success to date in recovering my health in the recent past. (And naturally the usual expenses every person has, even those with the good fortune to be chronically well.) But in order to get me to break the money out of my hands, as I'm very weary of the ongoing expenses, I had to have a big scare one day when I realized my blood vessels were as bad as the people with cancer getting treatments at a progressive (private pay) clinic I was getting nutritional IVs at.
The doctor impressed upon me the priority on sleep and convinced me to take more medications (the means to an end), which at that time were not the newer type and I've had some secondary problems from that, but in the overall scheme of things, the change in lifestyle (commitment to be in bed at 10 pm and not getting up until after being there for 8 or 9 hours no matter what). Since I was going to be spending 33% of my time in bed for the first time in my life, I invested for ME, in a REALLY good (yet expensive) bed, and that made all the difference. Five years later, it now has a broken down surface and is on the list of things to replace someday when I have the money and nothing else more pressing to spend it on.
I don't think my own family and some friend have really understood or understands this to this day, because there was no 'dramatic' event to point to that was in the news ... In order to save money I'd been putting layers of things on top of the futon which had previously been perfectly comfortable before I had fibromyalgia -- far be it from me to replace a mattress when it was in perfect working order it was just my BODY that wasn't? !! I'd been using hand me down TVs and stereos or ones purchased in my 20s despite that I am frequently home using the equipment (remember, no vacations/travel for 15 years since having these expenses and issues) and finally realized that I was worth having a good system to ENJOY.
Silver lining of an upcoming surgery that coincided when I had a little extra money and had been 'in the black' with my occupational therapy service contract business, I'd thought a recovery from a surgery was going to be six weeks of homebound, per my doctor's forewarning and orders but I was able to spring back to work the next week because of my long-standing practice at being in pain and having things not going right in my body and functioning. Yes, it's a lot of shifts and thinking and figuring out 'your head space' as well as what's in your body going on. My pathological 'cheapness' and was something I worked on -- as a child I saved literally every dollar that came into my hands and I did without the things most kids spend their 'fun money' on. I believe was part of why my health turned around so much in those years. But overall, these have been minor expenses compared to the loss of work caused by my health issues, and direct health care costs to find solutions. From my general dentist who gave me a hard time about not having taken a summer vacation this year or any vacation in sixteen years now, to people who have been knowledgeable about every facet of my entire life, people who have not lived it do not understand it.
So I ask today that everyone who is reading this please pay attention to what is being promoted in the media about the responders to our country's disaster ten years ago and give it much thought and attention. Talk about it in any way you see fit. It could be a small part in change that has to do with solving many of the enormous health costs that are crippling our country! Just the 9/11 responders are funded for BILLIONS of dollars for their health care and that didn't yet include cancer, which I believe and hope will get included in the future. They're but a small percentage and visible representatives of literally HALF the people of the United States.
In my case, had it been more clear to me the toxins in the building had 'tripped the trigger' when I went from 'having a few symptoms of chronic illness' when I was 29, as none of my coworkers were ill, I'd used my government benefits/insurances I paid extra for or which were included and likely have totally focused on the 'building' as the culprit, instead of moving along and seeing the bigger picture which is a continual onion to peel. I'd been particularly responsible with investments and insurances, purchasing my first home when I was 26, being able to pay cash for cars and having zero debt until my health issues occurred for the SECOND time in my 30s, when I was going to college and not working (but paying for insurance with a $10k deductible in order to lower my premiums, something I learned to never do when you're at any kind of risk for health expenses).
Figure out a new avenue to address, pursue it, see the benefit (or not, or sometimes detriment) and then keep going round and round. I've never added up my costs; I should do that sometime; I'm certain it's in the same ballpark as the 9/11 victims/responders, except I've now been at this for over twice as long. It's exhausting if you let it be.
I knowingly and willingly 'go into my energy reserves' to work and propel Lumigrate forward for the benefit of sharing this critical information with those who find and embrace it. And I would not trade any of the experiences I have had, I appreciate each exposure and it's affects because I more fully understand these conditions as a result. I believe it is 'my life's work' to do what I am doing right now on Lumigrate and proudly share the forums, videos and podcasts with people who without exception have worked as hard and experienced as much as I have, and have similar ethical and sincere motives related to their work which is promoted in the forums for our consumers/family of followers to follow and utilize if they wish. I've endured additional stress because I have a different belief system from people in my family of origin and those they are connected to. All causes of good / harm to the body / mind /spirit need to be considered and dealt with (or not) by each individual with chronic illness in particular, but naturally those enjoying chronic wellness as well. Likely, they're having more things benefitting them than adding to their toxic burden.
We rely no YOU to spread the word about us to those YOU care about. I saw not ONE reference in the coverage on CNN of the World Trade Center Worker's health care that were CAM, it was all ConMed -- inhalers, pills, and lots of ongoing lack of SOLUTIONS. And sadly, our HEROS struggling through things I sincerely don't believe are being most effectively dealt with. I don't want that for them; I commiserate with what they have gone through this past ten years as I've 'been there' in many regards.
I look forward to much more healing and thank all who serve our country; many have had adverse childhood experience (ACE) or other traumas which have contributed to their health just as the more dramatic and publicized (and therefore 'recognized') trauma of 9/11. And this week in particular, I thank those who 'serve and protect' and respond and rescue and support you as you do me. I hope directly or indirectly my service through Lumigrate is going to be able to contribute to your well being as you do to mine on a daily basis. ~~ Mardy
PLEASE take the time now or put it on your schedule/list to come back and take in this well done piece at CNN: it includes grade 9-12 learning/teaching objectives which I found well done and thought-provoking. One of my favorite moments was a survivor with health problems related to cancer not being covered in the health fund/program currently: "What's the worst that can happen for covering the costs for someone with cancer who risked their life responding?" Some people make SO much sense!
money.cnn.com/2011/09/02/news/economy/911_health_insurance/index.htm [13]
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate [6] and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!