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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Support teenagers new advocacy video channel! Thanks

Messages
10
Location
Atlanta Metro
Hello. Newbie here. I have a 17 year old daughter that has been sick with CFS for over one year. She also has POTS and maybe EDS. She's started a video channel to educate her friends about CFS/ME.

It started out when she got tired of explaining to her classmates why she was absent a lot. So she made a video and posted it on her facebook.
It was her very first video. http://www.youtube.com/watch?v=_TXRidx-gXQ

http://www.youtube.com/watch?v=iuFOmJ7RZco

This link is to a video that is a promo for her next video on the Epstein Barr Virus. 26 seconds
http://www.youtube.com/watch?v=gLhoS3W_fi8

Then her report on Epstein Barr will be posted this week.

Please support her. She wants to major in neuroscience. She often gets questioned about her illness because she doesn't look sick. She's trying to get the word out . She wants to get rid of the stigma of CFS/ME.

Thanks for listening. Feel free to share her reports and email her with any information, corrections or ideas through youtube.

Astrea





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Messages
10
Location
Atlanta Metro
Hello. Thank you for you support.

Lizzie will be uploading more video's very soon.She's started a video channel to educate her friends about CFS/ME.

Her story starts out like this...
It started out when she got tired of explaining to her classmates why she was absent a lot. So she made a video and posted it on her facebook.

It was her very first video. http://www.youtube.com/watch?v=_TXRidx-gXQ

http://www.youtube.com/watch?v=iuFOmJ7RZco

This link is to a video that is a promo for her next video on the Epstein Barr Virus. 26 seconds
http://www.youtube.com/watch?v=gLhoS3W_fi8

Then her report on Epstein Barr will be posted this week.

Please support her. She wants to major in neuroscience. She often gets questioned about her illness because she doesn't look sick. She's trying to get the word out . She wants to get rid of the stigma of CFS/ME.

Thanks for listening. Feel free to share her reports and email her with any information, corrections or ideas through youtube.

Astrea
 
Messages
71
Thanks for posting this and thanks to her for making these videos! I'm also a teen and close to her age (I'm a college freshman) and can relate to how she feels about CSF/ME being "invisible" and having to explain to friends, or even function as a student. It's difficult... no doubt about that. The quote I live by is "Success is to be measured not so much by the position one has reached in life as by the obstacles which he/she has overcome" - Booker T. Washington

So true, and it helps me get through those hard moments. I wish her the best... I'm actually a Neuropsychology and Anthropology double major and a science and psychology nerd... neuroscience is a very neat area of study.

Keep up the great work! :thumbsup:

All the best!
-Lilac
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
I remember seeing this a while back. She/you should consider going to a CFSAC meeting. She puts a good face/articulate/intelligent on this disease and could probably help herself and many others with her advocacy!

GG
 
Messages
10
Location
Atlanta Metro
Dear GG,
What a honor that would be for her. If you have any information on the organizer of the CFSAC meeting, private message me. Please feel free to comment on her youtube page and make that suggestion to her personally. (I'm pretty sure you can email her through youtube. Since I am her mother, she feels I am bias and my opinion doesn't hold much weight. Thanks!
 

Denise

Senior Member
Messages
1,095
I am planning the spring Speak Up About ME event - hopefully to coincide with CFSAC in Washington DC - and I welcome help, participants, etc.
We again plan to attend CFSAC, have lunch together (bonding in person with others with ME/CFS is a novel experience for many) and who knows what else we might do.....
Participation by early onset patients and families is especially welcome as we want to empower young people and their families so that we get the treatments and services we all deserve.
Participation in person is especially powerful, public comment to the CFSAC by DVD or telephone are also very powerful.
PM me or contact me at speakupaboutme@gmail.com. Speak Up About ME! Let's do it!



Please note that the Speak Up About ME website is way out of date. Our webmaster has been too sick to work on it. We are trying to find a way around this.... Please bear with us.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Dear GG,
What a honor that would be for her. If you have any information on the organizer of the CFSAC meeting, private message me. Please feel free to comment on her youtube page and make that suggestion to her personally. (I'm pretty sure you can email her through youtube. Since I am her mother, she feels I am bias and my opinion doesn't hold much weight. Thanks!

Looks like you recieved a response. I am willing to donate money and perhaps even travel and would read a persons testimony?

GG