Sunday, October 16, 2011

New Online Groups for Teens and Parents!

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 Related Illnesses (members are between ages 11 and mid-20's).

Click here for Parents of Kids and Teens with ME/CFS and Related Illnesses (open to parents of dependent adults, too, and the range of illnesses includes tick infections, EDS, POTS, and more).

Note that the Teens group is JUST for young people, and the Parents' group is ONLY for parents or other adult caregivers of young people.

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. Our local/regional group, #MEAction Delaware, also has a Facebook group (at the link) and covers the whole region: DE, PA, NJ, MD.

A couple of weeks ago, when our older son 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 him, 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 our son 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, our son 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 my mind 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
If only 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 Related Illnesses (members are between ages 11 and mid-20's).

Click here for Parents of Kids and Teens with ME/CFS and Related Illnesses (open to parents of dependent adults, too, and the range of illnesses includes tick infections, EDS, POTS, and more).

Note that the Teens group is JUST for young people, and the Parents' group is ONLY for parents or other adult caregivers of young people.

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 our youngest 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 ME/CFS for Young Adults (most members are ages 16 - 35) and the #MEAction page includes a group for #MEAction - 25 and Under.

The two new groups encompass not just those officially diagnosed with ME/CFS but also kids, teens, and young adults 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:
  • 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)
  • ME/CFS - Pacing with a Heart Monitor, 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. There is sometimes a wait list to get in.
  • The #MEAction Network lists over 100 groups on its page! There are groups by location, by occupation, by age, and all sorts of others - you can find a group that fits your needs, too.
  • Myalgic Encephalomyelitis Global is a general information & support group for all ME/CFS patients, with a large, international membership.
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! And you can follow THIS blog on Facebook - my Live with ME/CFS Facebook page has an active and supportive community on it.


Sue Jackson said...

Oh wow - looks like my fonts went crazy in this post! Too much cutting and pasting, I guess. I hope it doesn't bother anyone too much - no energy left to fix it!


Sarah Dawneé said...

Hey Sue!

I thanked you in an email, but I just wanted to thank you again for setting all of this up!!!
I'm excited about it.

I'm so, so, so sorry that things have been so very hard lately. But, I am VERY happy that you have such wonderful support around you!

Goodness, my heart aches for Jamie. I can understand what he felt when he wrote that.
For me poetry has become a powerful form of expression and way for me to work through the good and the bad of life.
I hope that writing is therapeutic for him too.

I'm praying for you both.


Kim Draghi said...

Hi Sue - thank you so much for creating these Facebook groups. Your timing is perfect as we have been totally stressed out here with our daughter and her illness. I know what you have been going through because we are just as devastated here. You know you have to do something different but just don't know what because it seems like everything makes her worse. So, anyway, it will be so nice to really be able to connect with others that get it! I do use other fb groups but mostly for POTS and fibromyalgia. Thank you for everything!!!!! Kim Draghi

Sue said...

Hi, Sue

The link to the Facebook HR monitor group goes to some kind of "page not found" type page... Typo? Or do you have to join the group first, or??


David said...

you didn't mention -- it's a full social networking site for "young" people (40 y/o or younger) with neuroimmune diseases (Lyme, CFS, etc).

Annie said...

Thanks Sue. I actually started setting up a Facebook page too but got sidetracked...and I'm not even ill myself and only have one sick kid! So thanks and I'm off to check it out...

Sue Jackson said...

Hi, Sue - Here is the link again:!/groups/ME.CFS.HRM/

but maybe because it is a "Secret" group (i.e. doesn't show up in searches) it won't work. I thought it would, but please let me know if it doesn't, and we'll try it from a different route.

Thanks -


Sue Jackson said...

David -

Thanks for the tip! Since I'm not a "young person", even by that definition, I didn't know about I did think there was another sort of online spot for young people with CFS but didn't remember what it was.

Thanks for sharing that!


CalicoZ said...

I had the same problem with the ME Mums and Dads page as Sue had with the Pacing with a Heart Rate Monitor group
Alice Zacarias

Sue said...

Hi, Sue

That link you posted redirects here:

Which has a title of "Content not found" and this printed on the page:

This content is currently unavailable
The page you requested cannot be displayed right now. It may be temporarily unavailable, the link you clicked on may have expired, or you may not have permission to view this page.

Sue Jackson said...

Thanks for letting me know the links aren't working for you. I have no idea why, but I have contacted the administrators of both groups for some help. I will post new links here (and correct the original post) as soon as I hear back from them. Sorry about the extra trouble - I was trying to keep things simple!


Sue Jackson said...

OK, I may have figured out the problem with the links. I use a secure connection for Facebook, so those links I posted start with https.

Try dropping the "s", so ME Mums and Dads would be:

And ME/CFS-Pacing with a Heart Rate Monitor would be:

Can someone try one of those and let me know if it works so I can correct the links in the post?

Sorry for the problems - hope this does the trick -


Sue said...

Same problem, at least for the HR monitor group. :(