tag:blogger.com,1999:blog-2962097063569112990.post5595952045634657810..comments2023-06-26T04:01:30.623-05:00Comments on Alysons CFIDS Blog: All Sorts of Updatesalysonhttp://www.blogger.com/profile/12965588211524276512noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-2962097063569112990.post-6799540652657118452009-09-13T12:41:20.225-05:002009-09-13T12:41:20.225-05:00Hi upnorth – Thanks! I’m waiting on tenterhooks be...Hi upnorth – Thanks! I’m waiting on tenterhooks because I really think that research that involves bodily fluids is the best and most useful kind of research for CFS. Surveys are interesting in that they can reach larger numbers at a cheaper cost and show trends; however, when it comes down to it, I think researchers really need to be looking at ways to give us some relief by dealing with biological data (not tell us more of what we already know based on not-as-scientific and subjective survey results).<br /><br />Yes, my job is full time, and they know I’m ill to a certain extent. They are really great about letting me go to countless doctor appointments without using any sick/vacation time. They’ve also made some accommodations from time to time about my work schedule. <br /><br />Hi Janis – I don’t think you’re a cynic. I think you're a realist. I completely agree with you about so many of the CFS studies out there, including surveys. (See my response to upnorth). <br /><br />I googled the test you mentioned, and it looks really interesting! I had a blood test to check for celiac disease not too long ago which came back, but I didn’t realize that I could still be sensitive to gluten. There was a lot of info on that website, so I’ll have to take a look at again when I’ve got a clear head for new information. <br /><br />Thank you, annie’s mom. <br /><br />Hi cinderkeys – Good point. I try to be careful not to push myself too much (beyond working with a low-grade fever) because I have been unable to work before (for two years). I am lucky enough that I have been able to work for the past four-plus years at my current job, so they have come to respect my level of professionalism and productivity...I think. :) I have no doubt that my supervisors would work with me if I did need to take a short leave for my health.alysonhttps://www.blogger.com/profile/12965588211524276512noreply@blogger.comtag:blogger.com,1999:blog-2962097063569112990.post-43132772868901504822009-09-13T02:43:36.260-05:002009-09-13T02:43:36.260-05:00I second upnorth's question. Is there any way ...I second upnorth's question. Is there any way you can work out accommodations with unpaid sick time? If you exert too much effort, you may find yourself unable to work at all.cinderkeyshttps://www.blogger.com/profile/01578961959712679966noreply@blogger.comtag:blogger.com,1999:blog-2962097063569112990.post-31752067604955319282009-09-12T10:54:41.865-05:002009-09-12T10:54:41.865-05:00Thinking of you, Alyson....
~ALThinking of you, Alyson....<br /><br />~ALannie's momhttps://www.blogger.com/profile/08799331382775213812noreply@blogger.comtag:blogger.com,1999:blog-2962097063569112990.post-33222528220986088462009-09-11T19:43:29.006-05:002009-09-11T19:43:29.006-05:00I hate to be a cynic, but too many of the CFS stud...I hate to be a cynic, but too many of the CFS studies are a waste of time because they are poorly defined and include people who don't have ME-CFS but who are just tired as well as some in the controls who do have CFS and haven't been diagnosed.<br /><br />Re your ferritin. If I were you, I'd do the fecal anti-gliadin and the genetic test through enterolab.com unless your low iron is due to excessive menstrual bleeding.Janishttps://www.blogger.com/profile/16006277875518001830noreply@blogger.comtag:blogger.com,1999:blog-2962097063569112990.post-83060939342689072812009-09-11T08:39:53.708-05:002009-09-11T08:39:53.708-05:00Hey Alyson, I hope you end up getting in one of th...Hey Alyson, I hope you end up getting in one of those studies...that would be excellent. As for the treatments, I DO hope something works...I tried a few month of anti-viral treatment once and was really disapointed when it didn't work, but it felt good at the time to at least be trying something...<br /><br />Is your job full-time? Do they know you're ill?upnorthhttps://www.blogger.com/profile/04283010424792189579noreply@blogger.com