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New Online Groups for Teens and Parents!

Posted Oct 16 2011 12:57pm
For weeks now, I've been meaning to set up a couple of new Facebook groups: one for teens with ME/CFS (and similar illnesses) and another for their parents.  I have really benefited from participating in other ME/CFS-related Facebook groups, but there didn't seem to be anything available for these two groups.  I finally did it this morning, after recent events made it feel urgent.

So, first the links and then some details
Click here for teens with ME/CFS and other similar illnesses

For  parents of kids and teens with ME/CFS and other similar illnesses .

I get e-mails and blog comments every single week from teens and from parents who are desperate to connect with others in the same situation, but they don't know anyone else in their local area.  In the past, I have addressed these notes individually, corresponding with people and trying to set them up so they can correspond with others.  But I can't do it all, and with Facebook groups, it is easy to find lots of other people in your same situation.

Many of you will remember that I set up a local group here in Delaware last year for kids and teens with ME/CFS and their families .  This local group (with families from NJ, PA, MD, DE, and even NY) has been a huge success, and we have all benefited by getting to know each other and having our own little support network.  Our families get together for casual picnics and gatherings, the kids have all become great friends, and the moms often get together for lunch .

A couple of weeks ago, when Jamie was doing really badly, I sort of hit bottom emotionally and just felt like I couldn't take this any longer.  I was sitting in a medical facility with Jamie, waiting (hours) for his IV, and I was ready to burst into tears.  I opened my laptop and thought, "Who can I talk to who will understand?" I didn't want to burden any of my healthy friends or family - it just makes them feel bad.  Then I realized I could reach out to our local group of moms.  I sent an e-mail, explaining how bad things had been and how I felt like I was losing it.  Within moments (literally), the nurse popped her head into our room and said, "Someone is here to see you - can I bring her back?"  It was one of the moms I'd just e-mailed!  She'd been in the grocery store next door when she saw my note on her phone and immediately came over to see us.  She brought me into the hall, gave me a big hug and let me cry, then ran back to the store to get Jamie some Gatorade.  In addition, within 10 minutes, I had e-mails from all the other moms, telling me they understood and offering all kinds of support.  I was totally blown away.  I want other parents to have this same kind of support.

As for teens, Jamie went to his Homecoming Dance last night at school.  He lasted only 2 hours and came home in tears.  He wrote this poem this morning and posted it on his regular Facebook page

"How many times can I break till I shatter."-O.A.R
Trying to scream out the frustration swirling through mymind but I lack the energy.
My last high School Homecoming and
I'm trapped in my own body.
Oh how I wish to be free,
... the things I'd do
the person I'd be
Ifonly I were free.

 And I realized that he needed the same kind of support, even when he's not able to get together physically with our local group.

SO!  I set up two new Facebook groups this morning, one for teens and one for parents.  Turns out it's pretty easy.  If you're not familiar with how these work, here's a quick overview:

You do have to join Facebook to participate, but most teens and many parents are already on there anyway.  Both new groups are Closed groups, which means that no one can read what's posted in the groups unless they are a member, postings will not appear in search engines, and I will approve the members.  Once you join a group, you can post on the wall, upload photos, share links - all the stuff you would normally do on Facebook, except that no one will see it except the members of the group.  You do not have to be "friends" with everyone else in the group - just being members of the same group allows you to participate.  This has been great for me because I limit my Facebook friends and my regular page to just family and close friends (otherwise, it's too much for me to keep up with), but I love to interact with other people with ME/CFS in various groups (see below).

So, once again, here are the new groups:

Click here for teens with ME/CFS and other similar illnesses

For  parents of kids and teens with ME/CFS and other similar illnesses .

I specifically used the term Teens, but younger kids are OK (Facebook's official guidelines say you have to be 13 to join, but I know younger kids sometimes do - we let Craig join at 12).  And slightly older is OK, too, especially for those still living at home who may feel younger than their actual age (I know how CFS can affect kids!)  

There is already an existing page on Facebook for Young Adult Patients with ME CFS, Lyme, Fibromyalgia etc . and also a page for the Association for Young People with ME .  

The two new groups encompass not just those officially diagnosed with ME/CFS but also kids and teens with related and similar illnesses, like OI, POTS, Lyme disease, fibromyalgia, and EDS.

There are other ME/CFS groups on Facebook that I joined and participate in regularly, including:
  • Low Dose Naltrexone (LDN) for Fibromyalgia and (CFS) Fatigue .
  • ME Mums and Dads (that's for people who have ME/CFS and are parents to children of any age, even grown children, focused on the challenges of being a parent when sick)
  • , a very valuable group for those using a heart rate monitor to try to avoid crashes; many members are also trying various OI treatments to reduce heart rate.
  •  And not on Facebook...there's a group website for young adults with ME/CFS and related illnesses ("young" is defined as less than 40 years old) that is very active:  HealKick (thanks for the tip, David!)
So, please use the links above to join our new groups or some of the other groups on Facebook.  It's a great way to interact with other people who totally "get it."  Of course, please continue to read and comment on blogs, too!
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