Wednesday, October 19, 2011

Testimony: A Glimpse into Severe ME/CFS

The upcoming CFS Advisory Committee (CFSAC) meeting will be held in Washington on November 8th and 9th. For those who may not be aware, the CFSAC exists to provide recommendations to the Secretary of Health on what directions to take in terms of research, science, care and broader health issues related to ME/CFS.

I had hoped to make another video testimony for presentation at this meeting; however, my health simply did not allow for it at this time. My testimony was therefore submitted in writing. You can find it below.

My goal was to show the faces and tell the stories of some of the more severely ill -- stories about this disease that are not often told. I wanted to do this not to evoke sympathy, but to create awareness and incite action.

Regretfully, I was told the testimony would not be accepted with the inclusion of photographs. I therefore had to resubmit it, excluding the pictures of the patients. However, I am posting my testimony here as it was originally submitted (including the photos) because I think it's so important for people to see our faces.

Much thanks to all those who granted me permission to share their stories and photographs. I am in awe of their strength and spirit.
~~~


Dear ME/CFS Advisory Committee,

Myalgic Encephalomyelitis (ME), often inappropriately referred to as chronic fatigue syndrome (CFS) in the U.S., is a serious and debilitating neuro-immune disease. While cases vary from mild to severe, studies have shown that many patients experience a level of disability equal to that of heart failure or late-stage AIDS.

It has been estimated that 25% of ME/CFS patients are fully disabled --often housebound or bedridden for years on end.

Yet, not many know the full spectrum of the illness because much of the suffering occurs behind closed doors. Patients are often too sick to tell their story. Some are living in darkness, some in silence and some in both. Some have not been able to leave their bed in years. Some struggle to eat, drink, speak and even breathe.

The following are just a few of those patients' stories.

~~~

My name is Laurel. I was 24 years old when I came down with ME/CFS following an infection with mononucleosis. I was active, ambitious, successful and well-educated. I loved travel, adventure and spending time with friends and family.

I never expected, at the prime of my life, to spend over a decade bedridden -- stricken with a horrible disease that has a trivial name and no effective treatments.

I am unable to stand, walk, speak above a whisper or fully bathe and care for myself. I have lost 15 years of my young adult life -- 15 years which can never be retrieved.

~~~


My fiance, Jim, was a former athlete in high school and college who earned a PhD from Carnegie Mellon.

Jim fell suddenly ill at age 19 after developing mononucleosis. He's been sick for almost three decades - more than half his life.

His dreams and ambitions cut short, he's been housebound and unable to work for years. He requires a wheelchair because he can no longer walk. He longs for the day he can run again.


~~~

Nina was struck down with ME/CFS at age 27 following a flu-like illness.

A young woman with many hopes and dreams, her life was suddenly turned upside down. She used to love to dance. Now she is unable to leave her bed and needs constant care.

At one point, Nina became so sick that she was struggling to eat, drink, talk and even breathe. She has been hospitalized several times. Her biggest wish is to be strong enough to sit in a wheelchair again, if only for a couple of minutes.

~~~



Alexis before ME/CFS



Alexis -- an ambitious, successful and energetic young woman -- also fell suddenly ill in her late 20s. She has been sick and housebound for many years now. As a result, Alexis' hopes for her future have all been forced on hold.

Alexis recently suffered a severe setback, rendering her essentially deaf and blind due to the neurological problems imposed on her by severe ME/CFS. She must now live in darkness and silence 24 hours a day/7 days a week.

Her family currently communicates with her using Tactile Fingerspelling – a form of sign language for the deaf and blind. She cannot even tolerate the sound of whispers.


~~~


Ben was a healthy, active 18 year-old when he became suddenly ill following an infection with mononucleosis, which later led to a diagnosis of ME/CFS.

Now 23, Ben is essentially completely bedridden. On a good day, he can take a few steps with a cane. At 6'2 he weighs just 118 pounds. He needs others to wash his hair and cut his food.

Ben spends every day in bed as his friends and peers move on with their lives, doing and experiencing all the things he longs to do but no longer can.

~~~

Marian was a former registered nurse (RN, MSN). She created a company called TrakMed, which provided trackside medical care for many auto racing teams. She partnered with General Motors Racing, providing innovative care for their drivers and teams.

Marian became suddenly ill in her 40s following a flu-like illness. She has been ill with ME/CFS for 10 years and is currently housebound and mostly bedridden. She often has trouble sitting up in bed, and she requires supplemental oxygen to breathe. Her sister, who also suffered from the illness, died of heart failure as a result of ME/CFS at age 49. Marian sometimes worries that she may meet the same fate.
~~~

Emily became ill with ME/CFS when she was just 6 years old. She's now 30. She's been sick for 24 years --almost her entire life.




She writes:"I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music - the list is long. ME has made my body an agonising prison."

Emily's daily life involves medicine/fluid being pumped into her stomach through a tube, various injections, diaper changes, transient paralysis and pain so severe she sometimes hallucinates.



"This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change."

~~~

Please listen carefully to the testimonies being presented today. Please see our faces, hear our stories and understand our desperate plight. Some of us are quite literally fighting for our lives.

In return, we are not asking for much.

We are simply asking for the basics of what should be expected with any illness:

  • a clear and accurate definition,
  • an appropriate name that doesn't belittle the disease,
  • adequate funding for serious biophysical research,
  • clinical trials of medications in search of treatments and a cure,
  • and increased awareness/education about the true nature of this horrible disease.

That's all. It's what is done for every other illness of equal severity. It's even what is done for illnesses of lesser severity. Why has it not been done for ME/CFS?

We've been waiting 30 years for the government to take action. We cannot wait any longer.

Thank you.

Note: Due to my health, it took me over three months to complete this testimony. All photos and stories are presented with permission.
_________________________________

To read this testimony translated into German (thanks to Nina!), click here.
To read this testimony translated into Dutch (thanks to Zuiderzon!) click here.

March 2012 Update: Tragically, Emily, one of the young women mentioned in this testimony, passed away on March 18, 2012 due to complications from severe ME.


30 comments:

  1. Laurel
    Thank you for using your precious energy to write such a powerful testimony for the CFSAC meeting. It is so powerful, I don't know how it could be ignored.

    ReplyDelete
  2. Thank you Laurel and everyone who contributed to this important testimony.

    ReplyDelete
  3. well done! thankyou for all your wonderful work.
    cheryl x

    ReplyDelete
  4. This is really well done Laurel... I'm praying this year's meeting brings some action... for all of us.

    ReplyDelete
  5. Thanks Laurel and to those who have also contributed. These stories even shock me and I am housebound myself. When will they listen??!!

    ReplyDelete
  6. Hey laurel. I know how much this must have taken out of you, 3months to prepare this and yet you still persevered. I love your strength & determination that despite how long this took you, you are still making sure your voice is heard. We all owe you a huge debt of gratitude. Despite your own battle with your health you continue to raise awareness, you are as always an inspiration.
    All my love Vikki x

    ReplyDelete
  7. What a shame the photos couldn't be included. They tell so much of the story. Thanks for your hard work, Laurel. You're an inspiration.

    ReplyDelete
  8. Wonderful letter Laurel! Thank you for speaking out for those that are unable.

    ReplyDelete
  9. Beautifully done, short and to the point. Thanks Laurel.

    Hearing how bad it can get, makes me grateful for what precious health I have.

    xx Hope you have some good days soon.

    ReplyDelete
  10. Thank you thank you thank you THANK YOU.

    It is shameful how many lives are being lost to this illness and what little is being done. Thanks to all who contributed these powerful stories. I hope our government and medical community finally listen. And DO something.

    ReplyDelete
  11. Fantastic testimony, Laurel! Thank you! And thanks to everyone who shared their stories. :)

    It's high time for the severely ill to become the public face of this disease!

    ReplyDelete
  12. Thank you so much Laurel and all other patients who contributed to this years' testimony. How many more testimony will you need to write before they hear? I want to hope we are getting there slowly but firmly. Take care.

    ReplyDelete
  13. Another wonderful achievement! Thanks, Laurel, and thanks to all others who told their stories. You may be hidden behind closed doors but you're bringing this illness out of the closet through your testimonies.

    ReplyDelete
  14. Beautifully done, Laurel. Thank you.

    ReplyDelete
  15. Well done, Laurel! I know this must have been very difficult for you to write and compile. Yet you did it and are providing a voice for all who are severely affected by this disease! Brava!

    ReplyDelete
  16. Bravo, Laurel. You are an inspiration to all of us who have plumbed the depths of this illness -- to see how much you can accomplish from bed.

    ReplyDelete
  17. Fantastic testimony Laurel. Thank you and everyone involved for sharing your stories. Thank you for keeping the fact of how severe this disease is for too many of us as part of the picture. And thank you for your succinct summary of what is needed. I will share this.

    ReplyDelete
  18. Of course, thank you very much Laurel.

    I'm wondering .. what is the purpose of these testimonies to the CFSAC? Perhaps I'll include a testimony one day.

    ReplyDelete
  19. Laurel, you show so beautifully that it doesn't matter how much (productive) time we are given, only what we make of it. With such limited energy, you accomplish more than many others in a long, healthy life. You are giving of yourself, even if it costs you so much. I hope with all my heart that one day something will be given back to you: The one thing that you long for the most.

    Thank you for being such an inspiration and a wonderful human being to share a planet with :)

    Nina

    ReplyDelete
  20. Thank you for being such an inspiration and a wonderful human being to share a planet with :)

    That's is wonderfully said by Nina and I totally agree. I shared your story in the Netherlands. The situation is not much different here.

    I wish you alle the best dear Laurel!

    ReplyDelete
  21. grazie delle testimonianze

    ReplyDelete
  22. Thank you SO MUCH for doing this for us all, Laurel- I am also afflicted with severe ME and would gladly contribute to any testimony now or in the future- I don't get on the computer regularly so I haven't investigated this kind of thing but I would love to contribute, as there i s a desperate need for us to be heard! Thanks again and best wishes for healing!

    ReplyDelete
  23. Yes, beautifully done, thank you so much for the work did. These stories need to be known.

    Not sure if this is the right place to do this but the ME documentary "Voices from the Shadows", which tells the stories of 5 ME patients, is available to watch free online until Oct. 30th in the US and Canada. It is at the bottom of the 4th page here or type the name into the search box.
    http://mubi.com/festivals/mill-valley

    Getting these stories out into the public is so important!

    ReplyDelete
  24. You truly ARE my hero, Laurel.

    ReplyDelete
  25. thank you for that.. it must have taken a great effort to write and i am passing it on in the hope that more people read it

    ReplyDelete
  26. Just caught up with this Laurel - thank you so much for using your limited energy to keep fighting for everyone with ME.

    ReplyDelete
  27. Hi Laurel,
    thanks for taking the time & energy to share these stories. Lets hope they are really heard!

    ReplyDelete
  28. Very touching Laurel, thank you taking the time to post these stories.

    ReplyDelete
  29. Thank you Laurel, for doing this. "WE" Know what u must of had to go thu to complete this,
    Huge...Blessing's to you...& " May the Angels bring you 'more'!...joy, to your life "
    Great Job !! marie

    ReplyDelete
  30. Hola Laurel.Te quiero transmitir mi mayor fuerza para ti.He utilizado tu imagen y tu testimonio para pedir el apoyo de cuantas mas firmas mejor a fin de poder pedir al Gobierno de España que la Fibromialgia y al Fatiga crónica, las considere invalidantes como la ORGANIZACION MUNDIAL DE LA SALUD. En mi país aún no está totalmente reconocida.
    Yo la sufro y estoy luchando por conseguir apoyos y llegar hasta ellos para cambiar la Ley de Sanidad.
    Espero no te moleste que te haya utilizado para que la gente conozca la enfermedad. Y pido tu apoyo en tu página para mi petición.
    Ojalá algún día podamos llegar a conocernos.GRACIAS.
    Fatima Diaz-Islas Canarias-España.

    ReplyDelete