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Ideas for Increasing Awareness
Success Stories, Brainstorms, and Full Chat
Transcript from March 28, 2003
Guests: Connie Van der Eb, PhD, of the Chicago
CFS Association and Sharon Squires, RN, Patient Services Director, National
Fibromyalgia Association
Highlights from the Chat:
Success Stories Shared
- Buddy Program in which trained volunteers (often students) make regular home visits to people with CFS. The purpose of the visits is to offer companionship and to provide some practical help around the home. Help for socialization for kids who are ill. - Connie Van der Eb,
Chicago CFS Association and DePaul University
- Another project was to make a presentation to the Chicago public school nurses
"Understanding CFS in Young People" and describing the kinds of accommodations needed. - Connie Van der Eb
- Something else my students did was create an insert for the CFIDS Assoc brochure on kids. The insert gave chiccago area resourses in both English and Spanish - Connie Van der Eb
- Our school nurse has been supportive and intersted in all we can give to her. - Mary Robinson,
The Pediatric Network for CFS, FM, and OI
- I think it is very important to provide practical information to the school nurses about accommodations (such as my daughter's bed in the nurse's office for rest etween classes) and to encourage the RNs to advocate for the kids - Connie Van der Eb
- We have given presentations to school nurses at their conventions and at the state teachers convention - Peg Walk,
New Jersey CFS Association
- We also do displays in libraries, hospitals etc. for awareness day - Peg Walk, NJCFSA
- The CFIDS Association of America and National Fibromyalgia Association have assisted people with awareness projects by providing materials to hand out, sample letters, press releases, etc. - Rebecca Moore,
The Pediatric Network for CFS, FM, and OI
- The National CFS Association also allowed us to duplicate their Guidelines for Schools to hand out - Connie Van der Eb
- One class project for my students was to create posters to disseminate in the public schools which would appeal to students. I have the basic forms but haven't been able to duplicate them - Connie Van der Eb
- NFA offers a Survivor's Kit: posters, brochures, magazine subscription forms, pins, and more - Sharon Squires, National Fibromyalgia Association
- NFA provides instructions and assistance for what we originally called the Mayor's Proclamation Progam.
It includes How to's for contacting the media, and samples for writing to the government. The materials are online at www.fmaware.org - Sharon Squires
- We have a project with the support groups called the FAME Support Connection and we are decorating boxes, jars etc and putting them in appropriate places such as pharmacies stores (health) collecting change for research Its called "Change For a Change" - Sharon Squires
- We have had information tables at Doctor conventions - Peg Walk
- The CFIDS Association of America has volunteers teaching physicians courses about CFS primary care all across the country. I don't know if they are highlighting this on Awareness Day. It happens year-round. - Rebecca Moore
- The NJCFSA conferences and NFA FAME Conferences offer continuing education credits to healthcare providers that attend - Peg Walk and Sharon Squires
- We are asking all who are intersted to contact their doctors and offer magazine and subscription forms for their offices - Sharon Squires, National Fibromyalgia Association (publishers of FM Aware)
- Karin Amour, our Board member who is in charge of Awareness Day Mayors Proclamations wanted me to make sure people knew that the most effective thing you can do is write to the government official for your district and ask for support - Sharon Squires
- NJCFSA has bumper stickers that say "Fighting for a cure- Chronic fatigue syndrome" - Peg Walk
- I used to have business-sized cards explaining CFS and Awareness Day. it was great to hand them out with blue ribbons - Rebecca Moore
- Sharon Walk made business-card sized magnets. One example: Pooh characters and "Kids get CFS too." Sharon used those magnets you get in the business stores. You can print business cards on your computer and then they just stick to the magnet. - Peg Walk
- Youth can DEFINITELY do awareness day projects. That is how I got started in this work, when I was 17! - Rebecca Moore (now age
26)
- We also have a couple of color posters that Sharon made up that I can send - Peg Walk
- How to explain this illness to others: I found that telling the no of active hours total each day made an impact - Ann Holcomb Dixon
- The main way we have found that people understand is to have repeated contacts with us so they can see the effects. That's why the buddy idea is so good - Norma Zuckerman
- I think in our interaction at school "seeing" our child helps alot. They explain their illness and how they feel missing out on everything. We try to give them a worst day scenario, not a typical. - Mary Robinson
- We are in the process of having all our literature translated into Spanish - Sharon Squires
- Last year we had Dr. Bell come to school and the entire staff got an inservice on CFS. - Mary Robinson
- When we tell them what to look for it helps. - Mary Robinson
- I found it necessary to be in almost daily contact with my daughter's teachers to let them know that her upbeart appearance at school upbeat appearance at school disappeared at home - Connie Van der Eb
- We have half a dozen or so videotapes available from our organization - Sharon Squires
Ideas Brainstormed
- I think what teachers need is not to understand all the ins and outs of the illnesses, but the very basics and how it affects our kids re school. They need to know what they need to do to help and provide their education. - Mary Robinson
- IF you have a good tutor having them talk to the school about what they see can help. - Mary Robinson
- That's a great idea to have doctor or even advocates speak at teachers conferences! We will be happy to help with that! - Sharon Squires
- I think doing a little at school can be a great help to start, and with family too if they don't understand. - Mary Robinson
- One of our forum members often does presentations to special educators (Shanon McQuown). It would be great if materials were available for that talk and one for school nurses, so others could print them and use them to give speeches in their area. - Rebecca Moore
- Youth can organize a letter writing campaign from other teens to a government official (that's how I got started) - Rebecca Moore
- You can share the Fibromyalgia Aware February 2003 issue on juvenile FM with their schools and friends. It's great - Rebecca Moore
- Just sending an email to your family and friends is raising awareness. I think we need to think in terms of our energy levels and time and then see what we can do. - Mary Robinson
- I like the idea of simply sending an e-mail introducing your experience and linking to resources to family and friends - Rebecca Moore
- E-mail seems good and attach a brochure--less money. Maybe ask for permission to send it to the PTA e-mail list - Ann Holcomb Dixon
- EJ has her online store at CafePress.com with proceeds going to research. We're planning to advertise that - Norma Zuckerman
- Healthy siblings can organize a group of friends to hand out materials about these illnesses on Awareness Day at school, make an announcement on the loud speaker, wear ribbons or buttons in honor of Awareness Day, etc. Organizing a group of teens to do the project helps make it more popular and fun, and you reach more peers and teachers this way. - Rebecca Moore
- You can offer to do an interview for a local paper. - Mary Robinson
- Wear the blue ribbon: symbol of CFS Awareness. By wearing a blue ribbon you need not do
anything more, unless asked. It raises awareness when asked what the ribbon is and you
can explain it or hand out the brochure. - Mary Robinson
- Another thing a youth could do would be to recruit healthy adults that they know and ask them to distribute brochures on Awareness Day at their workplace. - Rebecca Moore
- What about showing the film I Remember Me and having a handout and maybe question and answers - Ann Holcomb Dixon
- Another project youth could do would be to mail an article or brochure about pediatric CFS, FM, or OI to the school nurses or pediatricians in their town. This is something you can do even if you can't leave the house much - Rebecca Moore
- We have a Pediatric Network brochure, and you can print out anything from our website and share it - Rebecca Moore
- Our website has a section about May 12/Awareness
Day. We link to free materials from other organizations. See www.pediatricnetwork.org/advocacy and the May 12 section. - Rebecca Moore
- Brochures could be sent to pediatricians, pediatric nurse practitioners, or school nurses - Ann Holcomb Dixon and Rebecca Moore
- I wonder if we could think of a way to reach out to the African American and Latino community with information about pediatric CFS. Maybe there are organizations of healthcare providers and educators with an interest in that area? - Rebecca Moore
- The video idea is good too--if it isn't to amateur maybe Sam would like to tape Dr. Rowe answering questions by, say, rebecca - Ann Holcomb Dixon
- We will be doing "Webcasting" in the near future That would be a way to get the word out - Sharon Squires
Live chat transcript: March 28, 2003
rmooreny:: Hi Connie! Everyone, cwvandereb is Connie Van der Eb, one of our guests
meggieliz42:: geez! we got a big chat going now! biggest one this year!
And77dc:: Andrea 20
meggieliz42:: oh hi!
dazzlnstrz77:: hi Connie, nice to meet you
meggieliz42:: hi I'm Megan...i am 12
MaryZ:: Welcome Connie
rmooreny:: Connie, we are waiting for Sharon Squires from the National Fibromyalgia Association, and then we will get started
dr mom 2579:: joanne, mom of Cassandra(16)
pegwalk joined
meggieliz42:: hi
dazzlnstrz77:: hi
cwvandereb:: Hi folks, I'm new to this forum and look forward to meeting you
MaryZ:: Peg welcome
rmooreny:: Hi Peg, we are waiting for one of our guests and then we will get started on
the Awareness Day topics
MaryZ:: Glad you could make it
pegwalk:: Hi, I don't know how long I can stay
rmooreny:: Do you want to tell us a few things about your Awareness work now, Peg, while you are able to be here?
meggieliz42:: thats okay..at least your here!
pegwalk:: Betty can't make it. it is her birthday
cwvandereb:: Thanks for the welcome(s)
MaryZ:: Connie,we are so glad that you could join us. I am Mary Robinson
rmooreny:: Everyone, Peg lives in New Jersey and has done a lot of pediatric CFS work there
dazzlnstrz77:: great:) Hi Peg, I'm Lauren
cwvandereb:: Mary, I remember sitting with you at dinner at the AACFS conference before this past one
MaryZ:: I remember that too!
MaryZ:: It is so neat to be "together" again
And77dc:: That's so cool!
MJP123 left
NormaZ joined
dazzlnstrz77:: hi norma
MaryZ:: Hi norma
pegwalk:: Hi Norma
dr mom 2579:: hi norma
dazzlnstrz77:: lol
meggieliz42:: hi norma!
rmooreny:: Sharon Squires should be here soon. In the interim, why don't we begin with
Connie? Connie, would you tell us about yourself and some of the work you have done in
Chicago? For simplicitity's sake, let's let Connie type and not interrupt with too many responses at once.
meggieliz42:: (everybody else was saying it so i had to)
NormaZ:: Hi
And77dc:: So how many of you have been to Awareness Day?
meggieliz42:: i havn't
rmooreny:: Let's start with Connie and then we will talk about our experiences in a bit
dr mom 2579:: what is "Awareness day"?
dr mom 2579:: I'm new here.
NFASharon joined
meggieliz42:: hi
dazzlnstrz77:: lets let out guests talk for a bit
dazzlnstrz77:: *our
NFASharon:: Hi Everyone
dazzlnstrz77:: hi there
MaryZ:: Welcome Sharon
NFASharon:: Thank you for inviting me
MaryZ:: We are so glad you could be with us tonight
rmooreny:: YAY. Sharon is here! YAY. :) Sharon, I've just asked Connie van der Eb to introduce herself and talk a bit about her CFS work in Chicago
NFASharon:: Great Hi Connie
MJP123 joined
dr mom 2579:: Does anyone know of any CFS groups in Michigan?
rmooreny:: Connie is a psychologist and researcher from Chicago, whose daughter has CFS. She is part of Leonard Jason's research team at DePaul University and volunteers for the Chicago CFS Association. She has a special interest in pediatric CFS and education issues.
dazzlnstrz77:: wow
rmooreny:: dr mom, I will make a note to e-mail you later on the Michigan topic. Rebecca
NFASharon:: I can check my resource list for you Send me your email address at tuckspal@attbi.com
rmooreny:: Connie, you're there, right?
MJP123 left
cwvandereb:: I've been involved with Dr Lenny Jason's CFS research team since January 1999. Out of that has come a course I teach at DePaul called "Coping with Invisible Illness: CFS". In addition I have slowly pursued development of the Buddy Program in which trained volunteers (often students) make regular home visits to people with CFS. The purpose of the visits is to offer companionship and to provide some practicl help around the home. Another project was to make a presentation to the Chicago publice school nurses "Understanding CFS in Young People" and describing the kinds of accommodations needed.
cwvandereb:: I'm a bit long winded in my intro
MaryZ:: That's good.
dazzlnstrz77:: wow that sounds great
rmooreny:: It's great information! Would you tell us about how you did the presentation for school nurses? How did you set it up, get them to attend, and decide what to talk about? Maybe this is something we can replicate...
NFASharon:: What an incredible need there is for this kind of program!
dr mom 2579:: absolutely
NormaZ:: EJ and I have have had a buddy from Connie's class and it was an excellent experience.
MaryZ:: I love the buddy system that you set up. What a great way to spend your time.
pegwalk:: That buddy system sounds great
dazzlnstrz77:: sure does
NFASharon:: Especially for the kids where socializaion is so critical
rmooreny:: One of our forum members often does presentations to special educators. It would be great if materials were available for that talk and one for school nurses, so others could print them and use them to give speeches in their area.
MaryZ:: Our school nurse has been supportive and intersted in all we can give to her.
meggieliz42:: yeah she has been!
dazzlnstrz77:: Wow, you are very lucky
dr mom 2579:: Wish I could say the same for our school system
dazzlnstrz77:: same
MaryZ:: What information do you share with the school Connie, or Sharon.
pegwalk:: We have given presentations to school nurses at their conventions and at the state teachers convention
rmooreny:: This is why the theme of awareness in schools is important to me. It's an area where increased understanding makes a HUGE impact on daily life.
MaryZ:: Peg is there anything you have used that could go on the site for others?
NFASharon:: This is a program that should be funded by the powers that be in Washington!
MaryZ:: Agreed!
rmooreny:: We could offer a printable packet of materials for people to share with schools for Awareness Day.
dazzlnstrz77:: i'm sorry, but when exactly is awareness day
NFASharon:: Excellent idea Rebecca
rmooreny:: May 12, each year
NFASharon:: May 12
dazzlnstrz77:: ok great
NormaZ:: That would be very good.
cwvandereb:: for the school nurses program, a fellow board member of the Chicago CFS Assoc. happened to attend a Healthy Schools conference, met the medical director of the school system, did some fast talking. We were invited to speak.
dazzlnstrz77:: and this isn't the same as lobby day, correct?
pegwalk:: Probably mary. I'll look into it. I have a whole packet of stuff but most of it came from the CFIDS Assoc or NJCFSA
MJP123 joined
rmooreny:: Ah, so the way to reach school nurses might be through medical directors for the region's schools
MaryZ:: I don't think most schools really have a medical director.
NFASharon:: It ended up all being on May 12 because originally Flo Nightengale was supposed to be the first notorious victim of this illness
rmooreny:: It may vary from state to state. I would think a large city school district would have a medical director, for example
And77dc:: wow
cwvandereb:: CFIDS Assoc. provided us packets of information to hand out.
pegwalk:: We have had a doctor, a retired school principal with CFS and a young person with CFS speak at the teachers convention workshop. There were almost 200 people this year
MaryZ:: Connie or Sharon would you like to tell everyone what exactly awareness day is?
rmooreny:: Yes, when I helped run the CFIDS Assoc youth program, we had a special packet for schools and one for pediatricians
rmooreny:: Good idea, Mary. Let's start at the begining.
dazzlnstrz77:: yes, im sort of confused
NFASharon:: Do you want me to take it Connie
cwvandereb:: The National CFS Association also allowed us to duplicate their Guidelines for Schools to hand out
MaryZ:: Please do Sharon.
pegwalk:: We also do displays in libraries, hospitals etc. for awareness day
rmooreny:: Go for it Sharon. Why don't you introduce yourself now, too, and tell us a bit about your work.
pegwalk:: Gudielines for schools is great I use it too
NFASharon:: Awareness Day was started by Tom Hennessy of RECIND and designated for the reason above so that communies could come to gether to learn about CFIDS/FMS
cwvandereb:: I think it is very important to provide practical information to the school nurses about accommodations (such as my daughter's bed in the nurse's office for rest etween classes) and to encourage the RNs to advocate for the kids
pegwalk:: Yes we need more education for schools
NFASharon:: My Name is Sharon Squires. I am a RN on the Board of Directors for the National Fibromyalgia Association Director of Patient Services. I have been with the organization since the beginning and WOW!!
MaryZ:: Sharon, I am Mary Robinson, cofounder to this venture with Rebecca.
MaryZ:: Is it correct to say that Awareness Day is a day set aside for all to raise awareness about CFS, and FM
NFASharon:: Yes, Mary We know one another from the old days on CompUServe I believe
rmooreny:: Sharon, we are so glad you can be here. What kind of patient services and awareness efforts do you organize through NFA? Can you tell us a bit about NFA's packets and other materials for Awareness Day?
MaryZ:: Oh boy that was a long time ago.
MaryZ:: I agree Connie. The more specific the better when discussing our kids needs.
NFASharon:: Yes. It is especially important, we have found for the smaller communities throughout the country because they often don't have the resources we have in the larger metropolitan areas
MaryZ:: Do find the nurses will advocate for these kids.
NFASharon:: Well, first of all, let me describe out Survivor Kit
cwvandereb:: One class project for my students was to create posters to disseminate in the public schools which would appeal to students. I have the basic forms but haven't been able to duplicate them
NormaZ:: That's a great idea connie
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MaryZ:: Connie, are you going to copy the posters? That would be great!
NormaZ:: Do you need help duplicating
dr mom 2579:: What is a "Survivor Kit"?
NFASharon:: Hang on a secI have to go to my note 'cause I always forget all of waht we put in them. For example, off the top of my head, I know we send some posters, brochures, magazine subscription forms pins Things like that You can go to our web site and get a better description of what is in them
cwvandereb:: I sure hope to duplicate them. I've a bit of editing to do first
MJP123 joined
NFASharon:: We also [rovide instructions and assistance for what we originally called the Mayor's Proclamation Progam
pegwalk:: Sharon what is your web address
dr mom 2579:: What is your website address?
And77dc:: This is wonderful information, and thank you so much! But I probably need to go lay down for now
And77dc left
NFASharon:: How to's for contacting the media, and samples for writing to the government. Our web addres is www.fmaware.org
rmooreny:: Thanks, Sharon. It is such a help in planning Awareness Day projects, particularly media and government work, if there are materials and forms to help one get started!
dazzlnstrz77:: sorry to interrupt, but it sounds like most of this stuff is for adults to do...is there anything that us youth with CFS can do?
MaryZ:: You have some good information in your packets, Sharon. It will get some of our members "thinking" I hope.
rmooreny:: Youth can DEFINITELY do awareness day projects Lauren. That is how I got started in this work, when I was 17!
MJP123 left
dazzlnstrz77:: oh ok
MaryZ:: Megan did a presentation to her class when she was in 5th grade
rmooreny:: This is such an important question Lauren. I am glad you brought it up!
rmooreny:: Let's brainstorm some things youth can do
NFASharon:: How many of you know about our magazine and have seen the last issue on juvenile FM?
pegwalk:: not me
MaryZ:: It was wonderful, Sharon
rmooreny:: You can share the issue on juvenile FM with their schools and friends. It's great
Ann Holcomb Dixon joined
rmooreny:: Youth can organize a letter writing campaign from other teens to a government official (that's how I got started)
dazzlnstrz77:: especially us youth who have enough trouble just functioning on a daily basis, its not like we can contact the media and be SO active
cwvandereb:: not me
dazzlnstrz77:: oh okay
rmooreny:: Welcome Ann, we are brainstorming awareness day projects that youth can do
NFASharon:: Anyone here tonight who hasn't seen it may email me at tuckspal@attbi.com weith their address and I will send you a complimentary issue
MaryZ:: Lauren, just sending an email to your family and friends is raising awareness.
dazzlnstrz77:: right
MaryZ:: I think we need to think in terms of our energy levels and time and then see what we can do.
NormaZ:: EJ has her online store at CafePress.com with proceeds going to research. We're planning to advertise that
dazzlnstrz77:: i agree
NormaZ:: Hi ann
MaryZ:: That is a great idea Norma.
MaryZ:: Welcome Ann
MaryZ:: What are other ways youth can reach out?
cwvandereb:: something else my students did was create an insert for the CFIDS Assoc brochure on kids. The insert gave chiccago area resourses in both English and Spanish
rmooreny:: Here is something my sister did when she was in high school: She organized a group of friends for an Awareness Day project. They wore blue ribbons in honor of the day, passed out brochures from the CFIDS Association to kids in their classes, and got an announcement about CFS made on the loud speaker in the morning. The cool thing is all of them were HEALTHY, so they had the energy to do this. They wanted to show their support and it meant so much to me. The power of the group is key in high school, so having a group of them do this project made it cool and somewhat popular, which helped.
MaryZ:: You can offer to do an interview for a local paper.
Ann Holcomb Dixon:: Hi eerybody! I am just figuring out how to do this.
MaryZ:: Connie that is a great idea!
dazzlnstrz77:: oh that sounds great rebecca
rmooreny:: The nice thing about a project where you pass out one or two materials is that you don't have to do any writing. <g> Everything is prepared -- you just distribute it.
MaryZ:: And by wearing a blue ribbon you need not do anything more, unless asked. It raises awareness when asked what the ribbon is and you can explain it or hand out the brochure.
rmooreny:: Another thing a youth could do would be to recruit healthy adults that they know and ask them to distribute brochures on Awareness Day at their workplace.
NFASharon:: We have a project with the support groups (which is my "baby") called the FAME Support Connection and we are decorating boxes, jars etc and putting them in appropriate places such as pharmacies stores (health) collecting change for research Its called "Change For a Change"
rmooreny:: My theme is delegating tasks to the healthy ones with energy
Ann Holcomb Dixon:: What about showing the film I Remember Me and having a handout and maybe question and answers
MaryZ:: Thanks Rebecca.
rmooreny:: Sure, that could be done at a community organization, school, synogog, etc.
MaryZ:: Good idea Ann
rmooreny:: Another project youth could do would be to mail an article or brochure about pediatric CFS, FM, or OI to the school nurses or pediatricians in their town. This is something you can do even if you can't leave the house much
Ann Holcomb Dixon:: Is there a way to view what I've missed?
MaryZ:: I think doing a little at school can be a great help to start, and with family too if they don't understand.
rmooreny:: Yes, Ann, I will post a chat transcript later
dazzlnstrz77:: this all sounds great, where would i go about looking for the CFS brouchers?
Ann Holcomb Dixon:: Are the quest speakers with us?
rmooreny:: True! I like the idea of simply sending an e-mail introducing your experience and linking to resources to family and friends
cwvandereb:: Recruiting healthy adults is a big concern for Chicago CFS Association. The healthy moms (I'm one) have the insight and experience +health needed to advocate
NFASharon:: Yess Ann We're both here
NormaZ:: That's good to now connie
rmooreny:: Lauren, if you look on our website we have a section about May 12/Awareness Day. NFA and the CFIDS Assoc offer free packets of material to people doing awareness day projects, and brochures are also for sale. I will check to see if the National Dysautonomia Research Foundation also offers brochures.
MaryZ:: Our new brochure will soon be up on the site, and we can post links to others, that are being mentioned.
rmooreny:: Lauren, we have a Pediatric Network brochure, and you can print out anything from our website and share it
NormaZ:: Are there activities aimed at the medical community
Ann Holcomb Dixon:: Yeah e-mail seems good and attach the brochure--less money. maybe ask for permission to send it to the PTA e-mail list
rmooreny:: Great idea Ann
MaryZ:: Ann, connie is cwvandereb, and sharon is NFASharon
NFASharon:: We are getting great response with the magazine Next issue circulation looks like it ewill go over 50,000!
Ann Holcomb Dixon:: Thanks for being with us!
pegwalk:: We have had information tables at Doctor conventions
NFASharon:: <G>
rmooreny:: I know that the CFIDS Assoc has volunteers teaching physicians courses about CFS primary care all across the country. I don't know if they are highlighting this on Awareness Day. it happens year-round.
MaryZ:: Congrats, Sharon!
Ann Holcomb Dixon:: Maybe the brochures could go to pediatricians
pegwalk:: When i say "we" I mean the NJ CFS Assoc.
NormaZ:: good idea ann
rmooreny:: Another idea is pediatric nurse practitioners, who might be even more open to the information
NFASharon:: We are asking all who are intersted to contact their doctors and offer magazine and subscription forms for their offices
cwvandereb:: I'm confused . Does the NJ CFS Assoc. have it's own brochures for kids?
rmooreny:: Sharon that is a great idea!
pegwalk:: The NJCFSA conferences offer continuing education credits to doctors who attend.
NFASharon:: So do the NFA FAME Conferences
pegwalk:: No but we have several articles that others may not have
rmooreny:: Here is a link on our site for those interested in awareness and advocacy resources:
rmooreny:: http://pediatricnetwork.org/advocacy/
pegwalk:: Our materials are mostly borrowed from other sources.
rmooreny:: It links to our May 12 page
NFASharon:: I have been receiving a lot of requests for bumper stickers lately I think NFA will have something avalable soon
pegwalk:: NJCFSA has bumper stickers that say "Fighting for a cure- Chronic fatigue syndrome"
MaryZ:: People like bumper stickers
MaryZ:: I liked the magnets you had Peg, with Pooh characters and "Kids get CFS too."
rmooreny:: Bumper stickers are a neat idea. I think having something concise is helpful. I used to have business-sized cards explaining CFS and Awareness Day. it was great to hand them out with blue ribbons
rmooreny:: Peg, you had magnets? Cool!!
MaryZ:: Yes little cards are nice.
NFASharon:: Karin Amour, our Board member who is in charge of Awareness Day Mayors Proclamations wanted me to make sure people knew that the most effective thing you can do is write to the government official for your district and ask for support
NormaZ:: The NJCFSA has done terrific things
pegwalk:: Yes Sharon made up magnets on business cards. We have several designs
rmooreny:: We've got to link to these resources on our May 12 page. Anyone that comes across resources you think we should list there, please send me the info at rebecca@pediatricnetwork.org and I will add it ot the site
MaryZ:: Sharon that is a great idea. What is most important to say?
NFASharon:: The web site for finding that information is www.findlaw.com
MaryZ:: Great!
rmooreny:: Sometimes the most important thing to let law makers know is that you care about these illnesses and are affected by them. Then, when NFA, CFIDS Assoc, and other groups lobby on our behalf, the lawmakers think that this is relevant to their constituents and are more likely to be helpful
MaryZ:: The magnets are something anyone can do. Sharon used those magnets you get in the business stores. You can print business cards on your computer and then they just stick to the magnet.
cwvandereb:: Is there a way to share some of our respective brochures, cards etc?
NormaZ:: Good point Rebecca
rmooreny:: Just writing to say what CFS/FM/OI is and how it affects your life is helpful
NFASharon:: Explain the nature of the illness (we will be glad to send you brochures and a fact sheet) and explain that it is an"invisible illness" but truly debilitating to many people and we need research dollars
pegwalk:: I can email copies to anyone who wants. Email me at pegwalk@aol.com
rmooreny:: Connie, anyone can send me their files for brochures, cards, etc., or the Internet links, etc. I will review them and put the most relevant ones on our website so all can use them.
MaryZ:: That is a great idea Connie. Rebecca and I will put the resources mentioned together to share.
cwvandereb:: Thanks, Rebecca
MaryZ:: Thanks, Peg
Ann Holcomb Dixon:: WOW A great network getting even better!
MaryZ:: Great Idea Rebecca
rmooreny:: Can anyone else share stories of how they helped someone begin to understand and learn about these conditions in kids? What ways of sharing information have worked for you...with the people you see in daily life
NFASharon:: There should be resources available in every community. What is so tragic is that when there is no understanding of it and the kids, as you will see in our magazine, especially, have had to endure tremendour obstacles to get what they neede
cwvandereb:: I'd like to send the edited posters to Pediatric Network
pegwalk:: We also have a couple of color posters that Sharon made up that I can send when I learn how to use my scanner
rmooreny:: Connie and Peg, please send me anything you can. It would be great to pool our resources in this way.
pegwalk:: Or i can get Sharon to do it for me.
Ann Holcomb Dixon:: I found that telling the no of active hours total each day made an impact
cwvandereb:: I wonder about CFS among Hispanic and African American young people. The prevalence among adults is higher than thought
MaryZ:: Yes Ann, that always hits people
MaryZ:: We have one african american in our group.
NormaZ:: The main way we have found that people understand is to have repeated contacts with us so they can see the effects. That's why the buddy idea is so good
pegwalk:: I'll try to get back. Have to get dessert for Alisa. Sharon is putting the opther 2 to bed so I can be here
NFASharon:: Here in California that is a big problem due to the large Latino community
Ann Holcomb Dixon:: I think it very likely some groups with limited access are missing diagnosis
cwvandereb:: Norma and all, my students and other volunteers have been deeply affected by their interactions with PWCs
MaryZ:: Definitely ann
NFASharon:: We are in the process of having all our literature translated into Spanish but it is a slow process because everything cost $!
Ann Holcomb Dixon:: what type of interactions?
NormaZ:: EJ has written to Oprah several times since she is in Chicago but no response
rmooreny:: I wonder if we could think of a way to reach out to the African American and Latino community with information about pediatric CFS. Maybe there are organizations of healthcare providers and educators with an interest in that area?
MaryZ:: I think in our interaction at school "seeing" our child helps alot. They explain their illness and how they feel missing out on everything. We try to give them a worst day scenario, not a typical.
dr mom 2579:: It took my daughter over a year to get her diagnosis because the doctors didn't believe it was a disease children could have
rmooreny:: I agree that having somebody see me and talk with me on a bad day can help them really understand.
MaryZ:: That is not so uncommon.
cwvandereb:: Ann, that's why reaching out to school nurses is so important and to alert them about Hispanic parents who may be undiagnosed and seeemingly not
there for their kids
NFASharon:: We have tried that approach with Oprah, telling her about the kids, but no response as yet
Ann Holcomb Dixon:: One of out members in Germany is having that difficulty right now
rmooreny:: Maybe this can help us think about our communications strategy for increasing Awareness. If we had a flier or brochure that stresses how kids look (often normal, but not always) and act, feel, are affected, etc., it could help
MaryZ:: Last year we had Dr. Bell come to school and the entire staff got an inservice on CFS.
rmooreny:: Wow Mary, that's great
Ann Holcomb Dixon:: Incredibile!
dr mom 2579:: We need that for our school system!
MaryZ:: When we tell them
MaryZ:: what to look for it helps.
NormaZ:: Having doctors speak for in-service at schools is a good idea
Ann Holcomb Dixon:: I wonder if Dr Rowe would speak at a teacher's conference?
NFASharon:: Our second issue of the magazine had as the cover "Funny you don't look sick!"
Ann Holcomb Dixon:: Or maybe Diana
MaryZ:: The eyes say alot. That is what all Meg's teachers tell us. But we need to sort of teach them what to look for.
dr mom 2579:: Who are Dr. Rowe and Dr. Bell
dazzlnstrz77:: dr. rowe! my saving grace!
cwvandereb:: How about Dr Bell making a videotape to share at school presentations?
pegwalk:: Night all I have to go now
NFASharon:: Ann, that's a great idea to have doctor or even advocates speak at teachers conferences! We will be happy to help with that!
dazzlnstrz77:: he's a doctor who researches CFS, NMH, etc
MaryZ:: IF you have a good tutor having them talk to the school about what they see can help. They can explain how Meg can be so on top of the lesson and all of a sudden it is like the shade goes down , or the light goes out.
dazzlnstrz77:: He works at Johns Hopkins in Maryland
pegwalk left
dr mom 2579:: too far for us.
MaryZ:: Connie, I never thought to tape it last year. If he does another I will do that.
dr mom 2579:: we're from michigan
MaryZ:: Dr. Bell is in Western NY
Ann Holcomb Dixon:: The video idea is good too--if it isn't to amateur maybe Sam would like to tape Dr. Rowe answering questions by, say, rebecca
NFASharon:: We will be doing "Webcasting" in the near future That would be a way to get the word out
rmooreny:: Sure! I love to do interviews.
rmooreny:: I would love to put together an interview with several pediatric clinicians on diagnosis and treatment. That is a project for later, though. I have my hands full with the website and forum lately. A single interview is do-able, though.
MaryZ:: Maybe it is something we could get funded to do it more professionally.
cwvandereb:: I found it necessary to be in almost daily contact with my daughter's teachers to let them know that her upbeart appearance at school upbeat appearance at school disappeared at home
rmooreny:: A grant <g>
MaryZ:: Definitely later...
NFASharon:: We have half a dozen or so tapes available from our organization
rmooreny:: Good point, Connie
rmooreny:: Sharon, what topics do the tapes address?
MaryZ:: Yes Connie, me too!!
rmooreny:: Gosh, a video on pediatric CFS, FM, and OI would be so helpful.
MaryZ:: That would be great!
NFASharon:: I really empathize with the kids because I had a "CFIDS like episode" when I was in 7th grade and spent the entire year out of school.
dr mom 2579:: I think it would help us out a lot, our school system is giving us a hard time right now
cwvandereb:: I also found it necessary to educate college administrations and sometimes health services about my daughter's special needs
MaryZ:: I think what teachers need is not to understand all the ins and outs of the illnesses, but the very basics and how it affects our kids re school. They need to know what they need to do to help and provide their education.
dr mom 2579:: showing them a video would help them "see"
rmooreny:: You know, even if a video by Sam might seem amateur, it would be an interesting way for him to tell his peers about what CFS is and what he wants them to know about his experience
NFASharon:: Yes, I think colleges need to be included. Many of our kids are at their sickest just at the time they enter college
cwvandereb:: Mary, so true. I focused on those points when I spoke to RNs
Ann Holcomb Dixon:: Even more I think somehow they need to get the idea that what the doctors say is true and it is not up to them to second quess or decide the extent of the illness on a daily basis
rmooreny:: dr mom, you might want to talk with other parents about school issues in the forum. We have some great advocates there who know a lot about special education issues and educational advocacy
Ann Holcomb Dixon:: Did you hear there is legislation a foot which could severly limit the IEP process?
MaryZ:: I think quite often parents are intimidated by the school
rmooreny:: I think it is so important for youth to learn how to speak up for themselves, do awareness work, ask for what they need, etc., because when they get to college they have to explain CFS/FM/OI for themselves.
MaryZ:: Yes, I have heard.
NFASharon:: Ann, forgive my ignorance, what is IEP?
MaryZ:: YEs REbecca
rmooreny:: Yes, the government agency I volunteer for, National Council on Disaiblity, is working on the IDEA/IEP issue. This is not an easy year for us in Congress.
Ann Holcomb Dixon:: Individualized Ecucation Plan under the Individualized Education Act
rmooreny:: Individuals with Disabilities Education Act (IDEA)
NFASharon:: AH, thank you yes I had read about that as well
Ann Holcomb Dixon:: oh sorry I always do that!
rmooreny:: IDEA mandates a free, appropriate education for all kids with disabilities that meet its criteria, including transition planning for independence and adulthood
NFASharon:: <G> Me too only its medical acronyms!
NormaZ:: I need to sign off. This has been an excellent chat.
rmooreny:: Everyone, we've reached one hour of chatting and I need to go lie down. We will keep the chat room open, though, and I'll leave my window open so I can copy and save the chat text later for a transcript. Have fun talking! Thank you so much, Connie and Sharon, for sharing so much wonderful info with us.
NormaZ left
Ann Holcomb Dixon:: Good bye Norma, when are you moving in next door?
NFASharon:: Yes, and it's like pulling hair to get the school boards to acknowledge that these kids are disabled
rmooreny:: We really appreciate that all of you came and shared so many tips, experiences, and resources.
rmooreny:: We are going to have a great bunch of resources on the web when we finish!
meggieliz42 left
MaryZ:: I too want to say Thanks for coming everybody. This has been great and has offered so much information!
NFASharon:: Thank you so much for including me I have joined the network so I hope to chat with you all again soon
dr mom 2579:: Our administration is giving us a hard time. They don't believe my daughter is sick
Ann Holcomb Dixon:: Our school seems to say that Sam needs a learning disability in addition to the CFS and if that is so what is the necessity of having the other health impaired category
rmooreny:: Sharon, we will look forward to hearing from you. Please post any time!
MaryZ:: We'll look forward to seeing you, sharon.
rmooreny:: Bye
MaryZ:: Bye
Ann Holcomb Dixon:: Bye
MaryZ:: Bye Anne
MaryZ:: Oh, sorry
NFASharon:: Bye all and don't forget if you want a magazine email me at tuckspal@attbi.com
MaryZ:: Thanks Sharon. It was so nice to have you and hear all your doing
MaryZ:: We really appreciate you and connie taking the time to be with us tonight.
cwvandereb:: Thank you all . I apprecaiate being include for the stimulating discussion!
MaryZ:: It was nice to "see " you again Connie.
NFASharon:: <G>
NFASharon left
MaryZ:: Lots of great ideas shared here.
Ann Holcomb Dixon:: I'm sorry I missed the beginning but I just realized I can read the top of the discussion.
cwvandereb:: And you, too. Mary. Please say "Hi" to Dr Bell for me. I'd be happy to give him an update on Marya (who he saw in Cambridge in 1994). Let me know. Her story is an interesting one
Ann Holcomb Dixon:: Thank you all for organizing this.
MaryZ:: I will Connie. I must get down to see him soon.
MaryZ:: You can send an update to me at mary@pediatricnetwork.org and I can share it for you.
MaryZ:: Thanks for coming Ann.
cwvandereb:: Thanks, Mary. How will I get a summary/transcript of this discussion...I don't want to lose some of the ideas?
MaryZ:: Rebecca will have that and I will make sure it is forwarded to you.
cwvandereb:: Thanks again. Take care. Bye.
MaryZ:: I hope you can stop by the forum sometime and share some of your great ideas on education etc in the forums. You have so many good ideas.
cwvandereb left
Ann Holcomb Dixon:: Hey, it looks like some of us are reluctant to go home.
swimgirl16 joined
swimgirl16:: Hey
MaryZ:: Well folks, I am off. My head is pounding tonight and the computer isn't helping. You can keep talking and Rebecca or I will shut this down when everyone is done. Have a good night.
dr mom 2579:: Does anyone know of any "good" doctors in michigan?
Ann Holcomb Dixon:: Good night Mary I hope you feel better.
swimgirl16:: How is everbody?
MaryZ left
Ann Holcomb Dixon:: Goodnight Rebecca thank you for the invaluable service you provide.
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