Laurel's October 2009 ME/CFS Testimony to the CFSAC

This is a video testimony of my experiences living with severe ME/CFS. It was presented to the CFS Advisory Committee's meeting in Washington D.C. in October 2009.

I am unable to speak more than a few words above a whisper, so my sister-in-law very graciously reads my testimony for me. It is her voice that you hear. Many thanks to her (and all others) who helped me put this together.

Thanks also to PANDORA, who helped make it possible for my video to be viewed at the meeting. Please visit the PANDORA website at:
http://www.pandoranet.info/

To view my blog where I write about my experiences with severe ME/CFS, visit:
http://dreamsatstake.blogspot.com

For those asking about what treatments I've tried, please see my partial list here:
http://dreamsatstake.blogspot.com/2010/02/treatments.html

**PLEASE NOTE: I am generally unable to respond to comments or to email messages.**
Thank you for your understanding.

Category:

Nonprofits & Activism

Tags:

• CFSAC October 2009
• chronic fatigue syndrome
• CFSAC
• ME/CFS
• CFS
• CFIDS
• me cfs
• me/cfs
• myalgic encephalomyelitis
• mecfs

[babybunnies]

can you please mention what CDC and NIH stands for??

[ellebee4]

@babybunnies CDC = Centers for Disease Control. NIH = National Institute of Health

[beitinjan]

Thank you for this very clear, honest and real account of life with M.E/CFS. People with this illness are not asking for 'special treatment', we are just asking for treatment. We are not asking to be put at the front of the queue, we are just asking to be part of the queue, afforded the same integrity, patience and respect as anyone else who is ill. Thank you for this very valuable contribution to spreading awareness and for sharing your strength with us. Thank you x

[lilbit0078]

Thank you so much for sharing your story. You said everything that we all feel and would like to also say. Thank you for speaking out and being our voice. Your video really touched my heart. Awareness is key. Love and hugs from someone with these illnesses.

[DadsBlueAngel]

ME Is not CFS? In Great Britain people with ME get a added sum and in order to save the stipend by putting the patent in the proverbial Procrustes bed. Roger Burns was pushing CFS to aggrandize status and not considering the impact on the lives of patients.

[DadsBlueAngel]

Back later--my eyes are fuzzing out.

[DadsBlueAngel]

Actually, FM survived as a diagnosis because they were related and since the FM people were largely functioning at some level, the buyers club could raise more money by keeping the FM adults and and children grouped together grouped together.

There was also little sense in throwing away the credibility gained by Kennedy's doctor. This is where Celeste Cox came in. She worked with Kennedy's doctor's nurse until she died in her nineties. The book'll last but the patient has gotten worse.

[reddolphin65]

ME is not CFS - Check out AHummingbirdsGuide to learn the differences. They are two distinctly different illnesses that have been lumped together. I wish everything you do, for you and other suffers.

[littlebobbie11]

Some people have trouble converting t4 into t3 the more active form of thyroid hormone in case you haven't already looked into that... I think it was in dr brownsteins book, im not sure...its hard to keep track of where I read what...

[CFSDemo]

i just re-watched this. this is a powerful video and laurel is an amazing wonder woman. -- rivka

[MrBlueVeins]

Thank you for sharing. I too had completed a degree and was outgoing and loved traveling. I came down with ME nine years ago after contracting malaria. I have struggled on and pushed myself due to ignorant Drs and misunderstanding family and friends - I now am able to do something one or two times a week and have to make sure I spend the rest of my time resting at home.

[Tenortone21]

Keep on fighting!! I've had CFS for 6 years now, and I am recovering. I feel stronger and I feel my mental faculties returning. Most of all, I see my health returning slowly. I also got CFS after a bout with mono (EBV), but hear me when I say this. ALL THE MEDICAL LITERATURE SAYS THAT EBV RUNS ITS COURSE. Hang on to that. It will go away. You should look into Co Enzyme A and Co Q 10. Honestly, my healing began on Coenzyme A. I got rid of the "Full Body" tension most of us have because of it.