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Jump to the date (TOC) you'd like to view: 5/13/05 Well, we got through the Million Letter Campaign—a tiny bit late but better late than never I suppose. The bracelets from the NFRA came, were distributed, and turned out to be really cool looking - a wonderful blend of pink and crimson with each one being unique. May 12 Awareness Day came and went; numerous online vigils were held. Tomorrow (Saturday, May 14), we have a HealthFair for this month's meeting. Be sure to welcome Carla Arledge as our new volunteer for the Meeting/Speaker Coordinator. Carla's gonna do her best to keep the meetings going, however, don't be surprised if they change somewhat! Don't forget about the upcoming FMily Fibromyalgia Conference on May 27th-29th in Arlington. They're looking for day delegates from our group. If anyone is interested, please contact Tigi Higgins. Volunteers are still needed. If you would like to contribute to our group by volunteering, please talk with Carla or Carvi with what you'd like to do to help. 4/12/05 (was 4/07/05; minor changes) Check out this exciting news!
4/02/05 So, happy April everyone! Our current news is as follows:
3/20/05 Hello again! So you've all heard the news by now! Dr. Cheney is coming to talk to us in June! He has big news for the CFS/CFIDS community regarding CFS & Cardiomyopathy. You can read more about his theories in the upcoming April newsletter and the same article will be available online too (asap). I've been a little slow this month updating this information & for that, I apologize. Things are often slow in the CFIDS/FM world aren't they... kinda like sludging through waist-deep mud in the middle of a cold, wet, foggy night. We have some more wonderful members coming forward to volunteer for our support group. We are still in need of a support group leader and a meeting coordinator along with meeting facilitators. Take a look at our updated Volunteer Positions page to see if there's some job that fits with your talents, abilities, and energy level. May 12 Awareness Day is coming quickly! If you have Awareness Day activities you're aware of (!), please share them with me and I'll get them onto our Awareness Day page. Don't forget you can always check with your local library to see if they'll allow brochures be put out about CFIDS/FM. That's one, relatively easy thing you can do from home (by calling them & mailing them brochures—assuming they'll receive them and put them out—be sure to ask) If you'd like to order one of the NFRA's pink & purple FM Awareness Bracelets (wristbands) with us, you can read about how to do that on our yahoogroup or by contacting me directly. If you wish to order it directly through the NFRA, just go to their website and order it directly (by snailmail or by creditcard). Take care all! 3/01/05 Well, Happy March everyone! The Grand Challenge is over. I have no clue how much was raised, however, if I hear an answer for that, I'll pass it on to ya'll! The website is being updated so be sure to check out the section on research info and advocacy & awareness. May 12th is coming up quickly so don't forget to get your letters ready for the May 12th Million Letter Campaign. For other Awareness Day ideas, please go to the Awareness Day section of the website. 2/25/05 Help Dr. Natelson find a CFS biomarker—donate now, even if it is just a small amount! There's only a couple days left (end date: 02/27/05) to donate to the "Grand Challenge (Natelson Research - proteomics)." Dr. Natelson has found evidence of inflammation in the spinal fluid in 30% of his CFS patients. He concludes that this study supports the hypothesis that some CFS patients have a brain disease. Find out why we care about this research!
In our local news, we still need a volunteer or team of volunteers to be Support Group Leader. We also need some people to work on meetings—getting speakers, scheduling the rooms, setting up (and closing down) for the meetings, facilitating. If you would like to help work on the newsletter or the website, there are various "to-dos" you can be involved in—even in just small ways. Let me know. 2/23/05 We have some new volunteers. These are all members who also have CFIDS &/or FMS. Be sure to notice the new Donations page under Advocacy & Awareness. Carvi Shamsid-Deen is our Newsletter Distribution Manager. If you would like to volunteer to help her with this newsletter distribution process, please contact Carol. Debbie Hart has volunteered to be our Referral List Manager. If you would like to help her with that or be backup for either positions, please contact Carol. Changes to the referral list are currently being made; the updated version will soon appear on the group, however, if you have changes to the list, you may send them to Debbie. Please be sure to thank both of these ladies for their generosity. I believe we also may have a person who has volunteered for the List Manager job but I don't want to speak too soon! Don't forget—we still need a new Support Group Leader! If this job sounds too daunting for ya'll, there are always alternatives. An option used by some support groups is to have a team of members fill this position. This option reduces the amount of stress and workload on any one person. It also helps provide a backup in case one of the team members is sick. If any of you think you would be interested in this sort of system instead and think that, under that option, you could get involved, please contact Carol. This same option could be used for our Meeting Planner position and Meeting Facilitator positions. For these teams to work best, we would probably need 5 people per team. Hope you are all doing "okay"! Feel free to contact me with other news that should be on here! 2/17/05 Many thanks to Carvi for volunteering to be our new Newsletter Distribution Manager. We are still looking for volunteers to help Carvi with this Newsletter Distribution process. If you are willing to help her get this job done or maybe be her backup for those times she's unable to take this on, please contact Carol. Editors and researchers are still needed for the newsletter. If you would like to help out with the newsletter, please contact Carol. Volunteers are still needed for Support Group Leader, meeting facilitators, and for meeting planning positions. Go here for job details. Contact Carol if you are interested. One other interesting note: see our archives for the We Are FMily '05 Conference brochure. This conference will happen May 27 - 29 in Arlington. Speakers include Dr. Sharp and Frankie Burget amongst others. It should be a good conference. While it is a Fibromyalgia conference, all are welcome and remember that many things that apply for FM also apply for CFIDS. For more information or to view their brochure, go to their website (wearefmily.com/Conference.htm). 2/12/05 Well, it looks like we may end up having the hardcopy version of the newsletter continue! Someone has volunteered to head up the Newsletter Distribution Team! We are currently working to find more volunteers for that team and things are looking good! If you'd like to contribute to this effort, please contact Carol! We do not have a volunteer for support group leader yet. It's an intimidating position for sure! Carol has done such a super job for so very long, it's hard to imagine that anyone could even hope to fill her shoes! But, take heart! No single person will have to do that! We're working to divide up the jobs she's been doing so that the support group is more manageable without being such a huge responsibility for any one person. For meetings to continue, we still need a meeting planner or a group of folks willing to work together to do this job! This entails getting the speakers, planning the meetings times, dates, and locations! The time, date, & location should be able to continue as it has been if somone simply takes over making the arrangements. We will also need meeting facilitators. This can be a single person who is able to make every single meeting or a group of people who are able to make meetings. Look at our Volunteer Opportunities page to read the details of these jobs. Many of you may be afraid to make any commitment to volunteering; that's understandable. This illness makes planning anything difficult, if not impossible. But remember that we only get anywhere one step at a time... even if that small step is just rolling over in bed! Look at our current list of volunteer opportunities here to find a job your size; we'll update it as often as required. If you have doubts, talk to Carol; maybe we can help you find the right space for your talents and abilities! Take care of yourself by participating in the "Gentle R & R Activities." Help increase awareness by joining in the Awareness Day (May 12th) Activities. If you're looking for a small thing you can do, The Million Letter Campaign is a small step. It's really important we do what we're able to so others can begin to understand these horrid illnesses. If you know of other Awareness activities, useful links, helpful books, or practical ideas to simplify daily living, please send them to me & I'll do my best to get them on the site asap—mind you, I don't move fast and am doing battle with some "bug" right now! <g> 2/02/05: Thanks to each of you currently considering donating your time, energy, and unique gifts to the support group. It's fantastic to see people willing to do what they can to help keep our group going! There are, however, still many jobs to be filled to keep the support group running in its current form with the monthly meetings, annual seminars, and hardcopy versions of the newsletter. Many jobs can be broken down into smaller jobs, such as a "job-sharing" arrangement! Consider your talents and your energy levels. If there's a particular position you believe you could do if you had another person working with you, let us know. You never know—there could be another person out there thinking exactly the same thing! To view the latest from Carol <VBG>, go here now! Take good care! 1/09/05: You might notice that there are some changes happening here. Nothing big on the website; just getting things updated. However, do be sure to note the "Gentle R & R Activities" and the Awareness Day (May 12th) Activities. If you know of other Awareness activities, useful links, helpful books, or practical ideas to simplify daily living, please send them to me & I'll do my best to get them on the site asap—mind you, I don't move fast! <g> The big Support Group News is that Carol Sieverling is resigning. Old Notes (pre-1/8/05): For those of you with brainfog out there, I apologize in advance because I do understand how brain fog can really complicate comprehension! That said, in an effort to help avoid spam, this site uses the "spelled-out" format for emails whenever possible (and I remember <g>): emailusername (at) emailprovider (dot) emailproviderextension (for example: "dfwlighthouse (at) hotmail (dot) com").
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