May 2008: Chronic Fatigue Syndrome Advisory Committee Testimony

[kholmes39]

Awesome testimony, Brian. Great that this got 4600 views. Really glad we both made it out to the race this year. A friend just donated $100 to SolveCFS.  Great to make a new friend, too, and looking forward to next summer's race.

[PamelaViktoria]

I recovered. The highlights: Fluoride sits in your pineal gland, slowing down melatonin production. If you stop sleeping, you'll never recover. I went on the raw food diet. My PH went up to 6.6. (my lowest was 4.5 yikes! At 8 oclock, all our lights are turned off. From 10-12 oclock, your liver does magnificent work. If you have any questions, please ask. I wish someone could have told me all this, instead of experimenting over and over. Also feel free to look at my blog about my experience.

[bernadette607]

Thank you for your bravery and courage in telling your story so honestly, thus speaking for all of us ME/CFS sufferers. Well done, and good luck in your future.

[8006121]

Being a 22 year old male I feel it is a real shame I can't go walking in the forest next to where I live everyday, I feel like every day that goes by has been a day lost when I could have had the pleasure to be out in nature walking. I was so super fit before I came down with M.E, now all I can do is look out the window as the days pass me by knowing I may never be able to exercise again.

[8006121]

I miss being out with nature so much. When I was 12-16 I was cycling 30 miles everyday I was super fit and when I was 16-20 years of age I was cycling 50 miles everyday, then I was put on am medication that made me so sick I threw up for 3 whole months as they persisted I keep taking the drug and in the end when I was finally aloud to come off of it the damage had been done to my immune and other systems in my body. If I go for a 20 minute walk I end up in bed for 4-5 days to recover .

[LSecret]

That's how I feel!

"a prisoner in my body"

[FreestyleBoy2010]

what can i take for this.. i notice it too i think i might have that also.

[ShermanTank13]

Thank you so much for putting forth the enormous effort I know it did to go and present your case like this. Thank you for sharing your story.

[moralestrue]

Thank you so much for sharing your story. I am so very sorry that you will not be able to have children. I pray that God provides insight into a cure to the world of academia.

[fogggygyrl]

I have been waiting for this day! Thank you for speaking out and representing the young male CFS patients. You did a great job and I hope you have a better future in front of you as I wish for us all.

[bjsmit1]

Thank you all for the words of encouragement; I really appreciate it. Please help to continue the fight for improved research, increased accountability, and overall reform. We all have a stake in this fight, and I believe that every individual who is affected by CFS has a duty to "give back", in whatever capacity they are physically capable of. Regardless of how big or small, every effort counts, and is necessary to garner change. Please join the CFIDS Association in this battle for reform.

[onagus2008]

Thanks for posting this. I am also an a young male, educated. I've dealt with this for years now relate to so much to what you're saying here. I've dealt with so much frustration - with insurance, clueless doctors, and unsympathetic employers. Wish you the best.

[KatiDebelic]

Thank you for sharing your experience on CFS on behalf of all the other sufferers out there whose lives have been halted by CFIDS. I recognize a lot of myself in your experience minus the health care support that you seem to have. So far, I have only seen my family doctor who doesn't have a clue what CFIDS entails. Still waiting to have an appointment date and time after the request was faxes 3 months ago- with a rheumatologist.. Good luck with your health!

[tuggerss]

Good job! That must have been very

stressful for you. Thank you very much.

Yes, we need a "young, male face to

CFS".

[keithbkr]

thanks for testifying. I can so relate to your story . I was a great highschool athlete looking at colleges when I came down with a Mono that never left me. I mudled through college in 6 years but trying to exhist in the real world has been a hell. The horrible treatment from doctors, the loss of friends and experiences and the government does paltry little to save us from this hell. If we were only well enough to protest on the street they would see how big a problem this disease is. Thanks!

[1madaboutguitar]

This is a nasty condition I went through absolute hell in the beginning and still have it after 5 yrs but you know what:

Lots of people who have CFS have such a negative perspective on life. I actually avoid other people with CFS because of this.

People need to ditch the victim mentality accept what has happened as part of life and create a different but also better life. My life is a million times better now then pre CFS. I wouldn't change anything, it was a gift!

[rebeccamesslna]

Thank you for helping others become aware of CFIDS .. I have suffered from this mysterious illness for more than 10 years .. Just thinking of the many things I have and will continue to miss in my life brings me to tears .. I pray a cure is found soon .. God bless you, Rebecca Messina

[kostyshankles]

Has anyone else with cfs or fibro noticed a significant weight gain, no matter how healthy you eat. Before i got sick 3 yrs ago, i weight 180, now i'm at 200. Along with thephysical anguish of cfs, seeing your body deteriorate and atropy is also depressing.

[BellissimoHime]

This was definitely a stereotype breaker. I saw the comments you made about how ill you were after going to deliver that message. Thank you so much for that sacrifice, for being a voice for every person who isn't able to go out there and stand before the organizations which, for now, hold our futures in their hands. I fell ill when I was 14 after what was most likely the EBV, and am currently doing the college thing completely online. We will make a difference somehow! Again, thank you.

[bjsmit1]

When writing my testimony, I really struggled with how personal I wanted it to be. As a young man, it's actually extremely demoralizing to admit that I'm hypogonadal, and that I rely on testosterone injections to "be a man". Or that I live with my parents because I can't support myself financially due to CFS. I finally thought, screw it; this committee and the public need to see that CFS can affect a healthy, athletic, normal looking young male, and not just the stereotype of middle-aged women.

[bjsmit1]

I needed the committee and the public to see that for young individuals like me, the loss due to CFS is not the same as someone who develops CFS later in life. Those who become ill later in life feel the loss of what they once were, what they once had, with their goals, family, careers, already achieved. For those stricken young, we are never afforded the opportunity to strive for our goals; we remain a bundle of unrealized potential, wondering if and when we will ever get the chance to "live".

[BellissimoHime]

That's so true. The people who get ill when they were young have to live with, "I could have done so much if just..." while the people who got it later in life have to live with, "I lost everything I worked so hard for," and that's not even including the people who get sick, go into a short remission, only to have it return worse. It was really important that you helped them see things the lesser-known perspective. No one wants that happening to their spouse, but it DOES happen to children, too!

[smlovinglife]

Oh my God, very well put! I can relate to you on multiple levels. I am a younger guy too and have had this since my teenage years. I am housebound now, and stretching as high as I possibly can to reach my dreams, from the home that I am confined to.

Some positives that come from this are the fact that we gain great wisdom, endurance and the knowledge that we are in this together! Though we may not have all met each other, we are certainly friends.

[sashaandshelby]

don't feel demoralized, give yrself credit for the strength you've had to dig deeper than most people will ever know in order to "live" yr life, mabey not the one u dreamt

of but the one you got to the best of yr ability, trust me I know what that takes I am

that "middle aged women ill since 1994 and have lost almost everything that you speak

of. Fools who think this illness

is caused by some sort of weakness on our part

have NO IDEA how strong WE ARE, we "MUST" honor that to "survive"

[vincent4500]

YOu are a very courageous person and i, as a handsome man of 37 yrs of age who has had this since his teens am glad someone else can challenge the bullshit myth perpetuated by medical ignorance that CFS is only something middle age women get..and I know how much damage cfs does to a mans capacity to be in the 'dating' game..seems to me women subconsciously want a healthy male..i mean women don't come in on white horses to rescue faltering men..the opposite has always been true though

[LovelyWhiteWitch]

Not all women are like that. My ex-boyfriend has cfids and I accepted him and loved him. Eventough we are not together anymore, I still care, support and love him so much. I am getting as much information as I can and spreading awareness about cfids/me. I know, I am just a little voice but I want to help.

Wellness and joy to you... *hugs*

love,

L

[vincent4500]

What i said was based on observation of life...went to many CFS self-help groups and always observed that whilst the men who went to these groups were 95% single, the women (90%) were despite illness married/with a supportive partner who came to pick them up from the group....i don't resent women, i appreciate they subconsiously need healthy strong men..due to having to be pregnant and needing to be protected..don't pretend this isn't deep in your subconscious or why you left your boyfriend!!

[LovelyWhiteWitch]

Please don't be angry. Of course, every person wants a healthy bf/gf, that's natural.

I don't want to discuss my relationship here. But just so you know, I didn't left him. He left me for another girl but we are still good friends and still love him very much and still hope we could be together again.

We should not hate each other, we should be friends here because although we are not together anymore, I still raise awareness about the illness. I want to help in my little own way.

Love,

L

[bjsmit1]

L,

Thank you for your comment. I know that not every woman is judgemental, and is willing to date a man with CFIDS. I have been lucky enough to date someone who is very understanding regarding CFIDS. As a young man with CFIDS though, it is extremely difficult to breach the myriad of topics that accompany CFIDS with a young woman, regardless of how open-minded they are. CFIDS dictates my daily life, which makes "normal" dating difficult as well. But thank you for having an open-mind.

[LovelyWhiteWitch]

bjsmit1,

That's so nice to hear. I salute, not only women but every person, who is willing to educate him/herself regarding something that concerns a loved one, who is willing to give love, care, understanding and support for a loved one. It breaks my heart when I hear stories about persons with CFIDS who are being ignored by their families.

[DrFrankyDolan]

My friend, great work! you are a brave man on a mission and I deeply respect that. Thank you for your advocacy. I too am working endlessly to raise awareness and also let people know that there is hope.

Truly, I wish you greatness.

[bjsmit1]

Please check out the 10 video series that document the Senate Briefing on Chronic Fatigue Syndrome on May 8, 2008. It was sponsored by The CFIDS Association of America.

[Shaylaina]

My immune system was also hit hard.

It is a whole body illness...lack of concentration, stomach, headaches, neck pain, skin sensitivity, sore glands, insomnia and fatigue...I realize now that I've been suffering with this since I was a child, not even sure what age to put to it. I would say it started around age 6 to 8.

[CFIDSgurl]

You are my hero. Thank you for being so brave.

[jaques81]

I agree with your theory. It seems like you too have read The Tipping Point. It is a great book. It is something we can all relate too.

[dougefish]

I just wanted to show some empathy, your video is very very compelling. I am sorry that anyone has had to go through this. I have CFS as well although not nearly as bad as yours. Good Luck if you ever want to talk i have some theories on how to get over it.

[bjsmit1]

Thanks for the feedback. You are a perfect example that a spectrum of CFS symptom severity and frequency does exist. Again, I'm not discounting those who can not even function, but because CFS is so complex, and the patient population is so heterogeneous, it does exist. For the sake of medicine, science, and research, it would be nice if all CFS cases were universal. However this spectrum solidifies how many body systems are actually effected by CFS, and essentially, are "broken" to some degree.

[Carrigon]

I think there's no doubt that it affects nearly every organ system in the body. The question would be, why are some worse than others? I think it depends on what you already have floating in your system. No two people always have the same viruses, such as, CMV with EBV, or EBV with HHV6. I don't have CMV, but I have EBV and HHV6. I'm also advanced Lyme. So I think co-infections play a huge role in the severity. Genetics probably also play a role.

[bjsmit1]

My theory, "The Perfect Storm Phenomenon": The body is very stressed (school, family, work, etc.); an infectious agent is introduced (EBV, HHV-6, CMV, etc.); oftentimes the patient doesn't listen to their body, and continues to try to function despite feeling ill; and some type of genetic predisposition is present. If all of these factors occur in the same time period, it can cause a tipping point, which becomes CFS. Once this occurs, it becomes a cascade of effects that lead to a disease state.

[Carrigon]

I don't know, all I can say is, my immune system did take a few significant hits and I can name each one. The last one, the one that completely disabled me and almost killed me felt like a retro virus. But prior to that, my health wasn't okay, I was only half functional and living my life around the disease. I went to college part time because I wasn't well enough to go full, but I was in denial that anything was really wrong. I had an excuse for everything, that I was fragile, easily sick.

[jaques81]

I know what you are talking about. believe me you are not alone. I feel like my life revolves around this horrible disease. I too had excuses for everything. And with those excuses then you resolve to blame, on yourself even on others who have been there for you in your worst "sick" days. You know? I do beleive most of us who had it, were not 100% functional before, whether we knew it or not.

[Carrigon]

Yeah, I was adapting without really knowing I was doing so. Obviously, if I couldn't go out everyday, there was a problem. But I didn't consider myself to be sick, I just knew I wasn't okay and I was adapting my life around the disease. I started to make major life decisions based on the fact that I wasn't well, but it wasn't something I spoke of. I was actually chronically ill prior to becoming disabled, but I was in denial of it even though I was only half functional.

[Carrigon]

I think you did a great job on it. It's just that I wish they could hear from those who are bedridden, the really severe cases. The main problem is that none of us look as sick as we are, so we are never really believed.

[jaques81]

I totally agree. Many people who do not know enough of CFS may not understand that there are different levels of CFS. They may look at this young man and say "Really? He is sick?" It is good and bad. I think a video or severe CFS cases could have been used in addition. Nevertheless, at least it gets the word out.

[Carrigon]

That is the horrible curse of this disease. We don't look sick. And that one thing has damaged us all this time. It gives people a license to be cruel to us.

[bjsmit1]

I know there is not enough awareness about those with CFS who are severely sick. I feel like I'm severely sick, but I know others have it worse than me. As far as using other videos to show the "bad" side of CFS, be my guest. I had 5 minutes to speak. No ability to show a video, etc. 5 minutes to speak about how CFS effects me. And when I made it back to my hotel (that I paid for), I fainted from POTS/OI/NMH. Following this testimony, I was in bed for weeks. I'm trying, but I'm 1 person...

[Carrigon]

I know what it cost you physically. It's just that only those of us who have it ever truly know. They needed to see you pass out.

But you did do a great thing by testifying. At least you tried and that is what is important. I think we're all frustrated that we can't make people see how bad it is. You aren't being criticized. I just wish there was a way to make those who don't have it really understand that it is that bad.

[BretagneShrew]

I know how you feel about watching all your friends grow up having a "normal" life around you while you live the chronic illness life. Sometimes they're like, "I'm so pissed off I didn't make it to that party on the weekend". I'm so pissed off I didn't make it to the bathroom on time sometimes.

[jaques81]

This disease makes me so angry. I can not even type this message. My significant other is helping me with this blog. I am glad this disease is getting more attention. But I feel there needs to be more representation of what CFS really is and the capacity with which is robs days, hours, minutes and seconds aways from life. People see you giving this speech, which is heart warming, but then they can easily say "this guy is able to be here today?". It is misleading. At least for me. Jaque

[bjsmit1]

With all due respect, I too have experienced periods where I could barely get out of bed to use the restroom. I still do have days, weeks, and months like this. I volunteer my time, my limited finances, and most importantly, MY HEALTH to share my VERY personal story with federal policy makers; all in an effort to progress the diagnostic measures, treatment options, and ultimately to find a cure for this horrible illness.

[bjsmit1]

I understand your anger and frustration, but bashing me for taking the initiative to sacrifice my time, my money, as well as worsening my health, all for the sake of EVERY individual who suffers, is simply wrong and misdirected. I have been sick for nearly half of my life. I have been from doctor to doctor to doctor. And like I stated, I have, and still do, experience a multitude of horrible symptoms day after day in bed, just like you.

[bjsmit1]

You have a significant other; that is HUGE. maybe you should count your blessings that you have been able to find someone who is understanding and sympathetic. I'm sorry you have this disease. I'm sorry 4 million Americans have this disease. I'm sorry I have this disease. But the reason I testified before this committee, and do SO much more for the CFS patient community, is so that no other 15 year old kid has to experience the journey that I have for the past 13+ years.

[bjsmit1]

And ironically, I even do it for people like you. Maybe instead of wasting your precious energy posting comments like this, you should contact your state Senator or member of Congress. Instead of blogging, get involved, make a POSITIVE difference. Think about it...

[jaques81]

I am so sorry to have offended you. I am very thankful for what I have. But I am so angry with this disease. I am just letting people know there are worst people than you. People need to know the extent of this disease. Knowledge is truly power. And Please do not condescend me by telling me my time is precious. I know it is. Thanks for all your contribution. Keep working hard for you and others.

[bjsmit1]

Honestly, I understand why you're upset and miserable -- CFS is not given much credibility, the federal government continues to fail the patient community time and again, and all of us with CFS wait in limbo, watching our lives pass us by. I have felt the same as you, and actually still do, regarding the lack credibility, treatment options, as well as the government's utter mismanagement of the very REAL public health crisis that is CFS. So no worries about your comments.

[bjsmit1]

And honestly, I have misdirected my anger in the past because of CFS. I definitely understand there is a wide range of the severity of symptom burden from patient to patient. I have been on the "bad" end of that spectrum many times, and at times, I have been near the "good" end of the spectrum. But not a day goes by that I am not sick from CFS -- every day for almost 14 years. Just going to that meeting left me in bed for weeks afterward -- but it was a sacrifice I was willing to make.

[bjsmit1]

And trust me, I realize that there are plenty of people who are completely bedridden. That is why I am so passionate about what I am doing. Every second that I spend trying to advocate, educate, campaign for research, etc. truly takes a huge physical toll on me. But if the "lucky" ones don't speak out, who is? I don't do this for me, and I actually spend money (that I don't have) trying to accomplish our common goal -- to conquer CFS. And despite my appearance, I am actually very sick.

[bjsmit1]

My goal in the testimony I presented was to put a young, healthy, normal looking male face to CFS, to show the committee that it comes in all shapes and sizes. Because part of the problem is the huge misconception that this is a disease of middle-aged, hormonal and hysteric women. I wanted to break that stereotype, and set a precedent, that CFS affects all walks of life, and in our case, robs us of the opportunity to even begin "living" our lives.

[bjsmit1]

Regarding your statement that "there are worst people" than me, how do you know that? You don't know me. You don't know how CFS impacts me. You haven't walked in my shoes. Your assessment is purely subjective, because I can assure you, that I have been sick for almost 14 years. I am sick. And I will likely remain sick. Just because I forced myself to make a 6 minute testimony does not mean that I don't spend my days in bed as well, because I often do. I hate the fact that CFS steals my life.

[bjsmit1]

I'm sorry if I came across condescending stating that your time is precious -- I fully meant it. I know that every second that we are able to have be somewhat "normal" is a blessing. Maybe I could've communicated what I was trying to say better. But from someone who has to budget their time and energy, I know what it is like, and I didn't mean it to come across that way. I apologize. Again, I understand your anger about CFS, and the lack of a meaningful response from the "powers that be".

[jaques81]

And I have contacted my members of Senate. I do what I can from my bed. And these blogs are what keep me going every single day. And I have contributed hundreds of dollars the the CFIDS organization. Im sorry I can not do more POSITIVE things from my bed.

[bjsmit1]

Thank you for doing what you have, especially with the limitations you face -- thanks. As a patient, I appreciate any effort, big or small, to advance our cause. I think dialogue like this can be important -- there seems to be a lot of in-fighting among the patient community. If we were able to collectively come together for our cause, we could facilitate an environment for social change, which could be the "tipping point" that we need to accomplish what we all really want -- to conquer CFS...

[jaques81]

Thank you for what you have done and what you are doing for everyone with CFS. I am angry and I am tired but I am not miserable. CFS for me is not a type of spectrum, there are a myriad of symptoms but for me I only have bad days. So consider yourself very lucky you were able to get up, put a suit on and sit and speak your mind.I wish I could even sit and type this message.Dr Franky Dolan, his video is powerful. That is CFS. However, Keep with the fight. We will find a cure!

[jaques81]

And I apogize, I do not know you. I just wish I had your energy to be able to sit and speak to people and relay my anger. Keep the with the fight, for those of us who physically can not!

[bjsmit1]

Although it might appear we are in disagreement, there is a very distinct over-arching theme that's the same, just worded differently. We all have the same goal: to defeat CFS. That is why I make sacrifices to progress our cause. I sincerely wish that you did have the energy to deliver a testimony. I also hope that in time your repetitive bad days are lessened, and you can begin "living" again without this unwelcome "companion". Remember, CFS does not define us as individuals. It just simply is.

[bjsmit1]

But I do have CFS. None of us chose this, but for some reason, it happened, and we are forced to deal. I choose to do everything possible to decrease my bad days and increase my good days. I know that notion is extremely difficult to even grasp when you can't even get out of bed. But there is a light at the end of the tunnel. Quality research is being done (not by the CDC...), and we will have results that lead to better treatments. I can't NOT believe that. Otherwise what's the point?

[jaques81]

I too have CFS and I commend you for being able to speak.I'm not trying to be offensive but you are only a mere bit of what CFS is.I am bedbound and can hardly care for myself.I'm 22 years old and have suffered for 6 years.I've lost my life to this.I just wish there was a face for CFS that REALLY showed my point.The person who is in bed, who can only get up for 10 minute periods of time.You are truly lucky you can get up and even sit in front of people and deliver a speech.Count your blessings.

[BretagneShrew]

I'm 22 and pretty much like you. but there are people worse than us, people who can't speak, see, get tube fed. I agree with what you're saying. I made a video about them, please watch it and tell me what you think.

[purefire47]

has anyone found the link between mono and cfs yet! this is ridiculous. soooo many people with cfs have mono right before they get sick, there must be some connection!

[bjsmit1]

Thank you ALL for the tremendous support, and positive feedback. I apologize if I have not been able to address everyone individually, but please know that if I could, I would.

Please visit The CFIDS Association of America's website, and support them in all of their efforts for our cause. With your help, they have reached the $1 million goal for 2008's "Campaign to Accelerate CFS Research", and now they need our continued support for their Annual Fund, "The Promise of Tomorrow".

Thank You!

[Alexsk1]

Well done on a very articulate speech. You got the point across well.

Alex

[SDD1244]

It is a huge injustice what we have to face.

Thank you for speaking out, Brian.

[aylwin1956]

Spectacular job Brian! Did you know that Polio was considered Psychiatric until they used a young man on PSA's, even though it affected mostly women, like all these diseases?? You are doing a tremendous service to all the majority of women who suffer from it too, as well as men (well, I call it ME!), and are hit hard with the sexism in the industry as well as the CFS skepticism! Thank you and Bless you from a 22 year ME survivor. Aylwin

[bjsmit1]

Additionally, Multiple Sclerosis (which closely resembles CFIDS) was initially believed to be caused by "female hysteria"; purely psychological in nature. Despite Charcot's original "discovery" of M.S. in 1868, followed by observation of lesions in the CNS upon autopsy, much skepticism remained in the medical community. Many other biological anomalies were discovered, but it wasn't until 1981, and the use of the MRI, until all skepticism was laid to rest. The exact etiology is still unknown...

[BretagneShrew]

in WW2 MS was known as the "lazy mans syndrome"

[Rheanna777]

Hey Brian, Thank you for doing the honorable thing and pushing through the pain and fatigue to get your word out. I got CFD at age 23 giving birth to my firstborn son 8 years ago. I have 2 boys and am divoced. My mother has FMS and her mother CFS so it seems genetic. I relate to frustrations about having to be dependent on family. I'm blessed to have two sons because they make me push myself but hate the limitations of CFS. Living near D.C I wish to be an advocate.

Blessings, Rheanna

[olsenkc]

Brian,

Thank you for your eloquent statement. This devastating disease is neither understood nor appreciated, which makes living with it more than difficult. I have been ill for 23 years and share your frustration. Your testimony gives us all strength to fight another day.

[frenchtulip53]

A powerful presentation! Thank you, Brian.

[ElisabethBry]

Thank you so much...You did an extraordinary job. I have CFS too and a Princeton undergrad degree so I share many of your feelings. Thank you for representing us so well.

[cgcox45]

You are an eloquent spokesperson for our cause. You seem very committed. We really need answers, treatments, definition, and your handsome visage and clear message will help convey the pertinent issues. I had my husband and teenage children gather round to watch you say that this is NOT DEPRESSION. Though they understand better than many, it was powerful,affirming and healing for us to hear and see you say it. keep on keeping on, brian. You are a bright light.

[goodellcl]

Brian -I thank you from the bottom of my broken heart for using what little energy I know you have to prepare for, travel to, and attend that meeting, and to face those people with your story. You are a hero to me and all of us who share the struggle. We appreciate you more than these words can say. I wish you peace of mind and improved health - Claudia (CFSer)

[digitalaardvarks]

brian,

thank you for this. you did not seem nervous to me. cfs can make it difficult to read and speak and you did fine, with an audience. i was hit with it when i was your age and now have had it for over 20 years. all i can recommend is to try to find something to do that is somewhat possible within this context.

[SharkBateNait]

I can definitely understand your hesitation to post this, but you put together an excellent speech and laid things out very well in my opinion. We have a few things in common, I'm 29, a guy, had this about a decade. I was in 2nd year at a top Canadian University when I was hit full force, never finished my undergrad. It's good to hear specifically what you missed out on, because I've missed out on so much of the same stuff. Thanks for posting this, I'm sure a lot of people will be grateful.

[bjsmit1]

Due to the support of many gracious donors who believe in the CFIDS Association, this milestone was attainable. As long as the federal government continues to fail the CFS patient population, The Association will continue to step up, and fill that role. This year's research campaign is the tip of the iceberg of what The Association is capable of, with support from us. As an individual living with CFS, I urge you to visit their website, and continue to support their efforts, as they support ours.

[bjsmit1]

The federal government has failed the CFS patient population too many times, for far too long. Because of the inadequate response to a major health crisis, The CFIDS Association of America has been tasked with the role of education, public policy, and most recently, a robust research program, lead by Dr. Suzanne Vernon, PhD. The Association launched a research campaign, with the goal of raising $1 million, strictly for research, in 2008. That milestone was met at the end of this past August.

[bjsmit1]

A recent DePaul study indicated that the economic impact due to CFS is $25 billion annually. Last year, a meager $114 million in lost productivity was attributed to psoriasis, yet the CDC & NIH spent a combined $10 million in research for the disease. Lost productivity due to diabetes cost $58 billion in 2007, and the NIH alone spent more than $1 billion on diabetes research. The NIH spent only $1.00 for research per patient with CFS in 2007; the NIH spent $48 per patient with diabetes in 2007.

[bjsmit1]

Last year, the CDC spent $4.7 million in CFS research, while the NIH spent $4 million; $8.7 million total. A CDC prevalence study published in 2007 estimated that between 1 and 4 million Americans have CFS; the annual economic impact per household is reported to be $20,000 per household, per year -- which only accounts for lost productivity, and not the costs associated with disability, insurance, etc. This translates to between $20 billion and $80 billion per year, in lost productivity alone.

[bjsmit1]

As I stated in the "info" section, I was quite hesitant to post this video; I was nervous, there was a 5 minute time limit, and I feel that my delivery could be much improved. Despite my trepidation, I believe that my message has the ability to educate viewers about how debilitating Chronic Fatigue Syndrome (CFS) really is; also referred to as Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS), among others... The video is testimony before the CFSAC, which makes recommendations to the DHHS.