May 2008: Chronic Fatigue Syndrome Advisory Committee Testimony

This is my personal testimony before the Chronic Fatigue Syndrome Advisory Committee (CFSAC) in May 2008. The CFSAC is a federally chartered committee, which provides advice and recommendations to the Secretary of Health and Human Services on issues related to Chronic Fatigue Syndrome (CFS). These include: 1) factors affecting access and care for persons with CFS; 2) the science and definition of CFS; 3) and broader public health, clinical, research and educational issues related to CFS.

The committee meets twice yearly, and consists of clinicians who specialize in the treatment of CFS/ME, as well as federal government entities, such as the Centers for Disease Control and Prevention (CDC), the National Institutes of Health (NIH), the Social Security Administration (SSA), the Food and Drug Administration (FDA), etc.

My testimony detailed the impact that CFS/ME has had on my life since I first became ill with mononucleosis at the age of 15, the difficulties of living with the illness for over 13 years, as well as the ongoing struggles that I continue to experience as a result of the disease. Although my "story" is quite personal, my intent was to put a young, healthy-looking, male face to CFS.

Category:

Nonprofits & Activism

Tags:

• CFS
• Chronic
• Fatigue
• Syndrome
• ME/CFS
• CFIDS
• Association
• of
• America
• Fibromyalgia
• myalgic
• encephalomyelitis

[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.

[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".

[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.