Pay it Forward For ME

I hope everyone had an alright day, or is about to have a good day!

I took a long test today, and I’m pretty much knocked out. My mind is burned out, and I need to rest for a bit! 

So, yeah. 

Oh, and I’m thinking I should invest in some new comfy clothing since hanging out in dresses all the time like I used to is just not quite as practical. I’m thinking some cute yoga pants, and comfy oversized t-shirts. 

Mhmmmmm.

rebecca-radin replied to your post: Online Therapy allegedly effective treatment for adolescents with ME/CFS

I hate doctors so much, it is so clearly a real disorder, I dont make my self pass out from the dizzy spells, or vomit from the nausea, or fall asleep in class on purpose. It is so clear, when will they open their eyes? This isn’t in our heads.

I agree completely. Money shouldn’t be spent on trying to make this seem like it’s a psychological illness. Money should be spent to find the root PHYSICAL cause. 

I feel like we can really relate to the koala. 

“The sleepiest animal in the world is the koala, who sleeps 22 hours a day.”

Well, no one else picked a mascot, so I guess I just did. They’re so cute! 

Click here for the study!

Okay… where do I even begin with my commentary on this study… First of all the name of this program made me laugh: Fatigue in Teenagers on the interNET (FITNET) 

That is the lamest name. Off the bat I knew I wasn’t going to enjoy this.  

WE’RE JUST A BUNCH OF TIRED TEENS ON THE INTERWEBZ. LOLOL.

No… no no no! If this group or program was really trying to help out those with ME/CFS, you’d think they’d pick a better name. 

“Typically, treatment involves (a) formulation of treatment goals, (b) establishing a sleep routine, (c) encouraging the participant to achieve a balance between activity and rest, (d) gradually increasing activities including home, social and school life, (e) addressing cognitions about fatigue, (f) gaining independence from surroundings and parents, (g) reducing the focus on fatigue, and (h) paying attention to relapse prevention.”

Why does this bother me? It bothers me that pediatricians are going to see this study and automatically shoo us away to cognitive behavioral therapy! As if we don’t get that enough as it is. 

“63% of adolescents reported having recovered after 6 months, almost 8 times as many as those given standard care.”

I’d love to talk to these adolescents, seriously. I know so many CFS/ME adolescents just on Tumblr that struggle beyond belief. Most if not all, have said that psychological treatment was not that helpful! I’m absolutely not saying that it’s wrong if this new online based therapy helps some sufferers cope with this illness, but I hate the fact that many doctors will see this study and jump to the conclusion that therapy is the cure-all for ME! It’s not.

Therapy is not the cure for most of the teens I’ve chatted with. Infact, the only kind of therapy that seems to be helpful for all of us is to talk to each other about how much we HATE doctors, and how much we wish the medical community would take this seriously as a neurological disorder. 

I’m probably going to receive some kind of backlash for this, but I felt like I needed to speak up for the adolescents here on tumblr with ME/CFS. This is the general feeling among us all. We want NEUROLOGICAL answers. 

-Lizzie

alittleanonymity-please:

I did not sleep a wink last night.
Oh and guess what? I am probably going to withdraw from all my classes for now (I’m in my second semester of 12th grade!!!) to focus on my health.
Do you know how much that sucks? To be so close to the finish line only to have to slow down?
Ugh. Seriously screw me/CFS. I’ll graduate eventually just not in May like I had planned. ): stupid brain fog ruined everything.

alittleanonymity-please:

I’m in pain from the physical therapy. I slept all day long and ate a bunch of junk food(not worth it). I feel like absolute shit and on top of all that I’m probably not going to graduate on time.

Just a lot of stuff is going on.

Le sigh.