tag:blogger.com,1999:blog-1345573145957924958.post4549097689689521795..comments2024-03-13T09:08:55.969-07:00Comments on Slightly Alive: Testimony to CFSAC - May 2013Mary Schweitzerhttp://www.blogger.com/profile/11583106682242141031noreply@blogger.comBlogger19125tag:blogger.com,1999:blog-1345573145957924958.post-52649084556982978882021-08-19T15:24:27.517-07:002021-08-19T15:24:27.517-07:00I was diagnosed as HEPATITIS B carrier in 2013 wit...I was diagnosed as HEPATITIS B carrier in 2013 with fibrosis of the<br />liver already present. I started on antiviral medications which<br />reduced the viral load initially. After a couple of years the virus<br />became resistant. I started on HEPATITIS B Herbal treatment from<br />ULTIMATE LIFE CLINIC (www.ultimatelifeclinic.com) in March, 2020. Their<br />treatment totally reversed the virus. I did another blood test after<br />the 6 months long treatment and tested negative to the virus. Amazing<br />treatment! This treatment is a breakthrough for all HBV carriers.MATINAhttps://www.blogger.com/profile/11827922186910353142noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-39629032150461181942013-10-25T20:59:17.450-07:002013-10-25T20:59:17.450-07:00Very impressive testimony. Kudos to you for your ...Very impressive testimony. Kudos to you for your testimony, I did that once, to help pass the anti-stalking/domestic violence law in my state-very empowering-particularly looking up and seeing rap attention while I spoke. Thank You so much for speaking for us...I don't even go to specialists anymore, they are not worth the effort it takes to go see them. I see a GP who is caring and will order whatever I wish and insurance deems important enough to pay for..and I pray a lot, and will never, EVER, give up my hope. Thank you again!!cannvanhttps://www.blogger.com/profile/12866340446252437629noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-87297769044373775482013-10-24T16:47:54.367-07:002013-10-24T16:47:54.367-07:00Another Thank you Mary, I can be feeling almost hu...Another Thank you Mary, I can be feeling almost human and the next minute I am in bed. I too am wondering what is happening to all those folks, cuz I am always just one day away, one Bureaucratic decision, one INSURANCE decision away from homeless. I am so greatful I am not, I believe this disease is much more prevalent because accounting abilities are hard to make when no one is accounting. If only I had the money, the strength, to help these people, it is not enough that some scholars and doctors are truly caring and interested, we need action at the lowest levels. I wanted to start a support group, (I can get crazy when I am able to get out of bed) well I had to realise, it would take guessing 4 folks to be able to take over while the rest of us are in bed for whatever. I don't SEE that even being an option. I don't drive anymore, the safety factor is just too dangerous, however, if I am accompanied I feel just fine, I just turn the driving to them when any number of disabling factors happen. I have an extremely hard time just going to the dr. its EXHAUSTING...some days I just call off "appts" sorta like calling off work, that is what this is like, bonecrushing work to step out of bed, then recuperate for 2-3 days. We don't want to be labeled non-compliant do we? If you have any suggestions on how to help those homeless folks, please let me know--so outrageous, it really is happening.cannvanhttps://www.blogger.com/profile/12866340446252437629noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-84003412062742012792013-10-24T16:24:24.726-07:002013-10-24T16:24:24.726-07:00Hi Flo, how about Post Exertional Syndrome? Since ...Hi Flo, how about Post Exertional Syndrome? Since they love attaching syndromes to us! At least it would be SOMETHING....but alas WE are not permitted to give our input. I better stop right there, before I get myself in a rant and have to stay in bed for a week...cannvanhttps://www.blogger.com/profile/12866340446252437629noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-20205035576854796352013-06-22T15:56:45.453-07:002013-06-22T15:56:45.453-07:00Great testimony! Thank you for speaking so eloque...Great testimony! Thank you for speaking so eloquently to represent so many of us. Anonymoushttps://www.blogger.com/profile/05323976497461523528noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-25859459488283926492013-06-22T15:51:34.544-07:002013-06-22T15:51:34.544-07:00I like that. Post - exertional disease progressi...I like that. Post - exertional disease progression. Anonymoushttps://www.blogger.com/profile/05323976497461523528noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-36455269359806115832013-06-22T05:40:59.968-07:002013-06-22T05:40:59.968-07:00'Fatigue' and 'Malaise' are such i...'Fatigue' and 'Malaise' are such inadequate terms when it comes to this illness as those without experience of it interpret them to mean we feel tired especially after exercise and doesn't everyone feel tired after exercise? No wonder the illness is so derided and misunderstood.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-32749392703232585802013-05-29T22:17:21.691-07:002013-05-29T22:17:21.691-07:00I love this post. Thank you.I love this post. Thank you.hkdhttps://www.blogger.com/profile/03606859927429573387noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-40657368846462680682013-05-29T04:30:05.254-07:002013-05-29T04:30:05.254-07:00Thank you Mary. Great testimony and 'right to ...Thank you Mary. Great testimony and 'right to the point' as ever. xLilpinkhttps://www.blogger.com/profile/11480603897401811321noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-63746283270224529012013-05-26T12:16:22.273-07:002013-05-26T12:16:22.273-07:00Mary, you are so appreciated for doing this year i...Mary, you are so appreciated for doing this year in and year out. PEM or PED, it defines the contours of possibilities for me in the "world". My world is the dim light of my bedroom and some very strategic activities to hang onto this body.<br /><br />Thank you Mary, Beautifully said!<br /><br /> Katyayanihttps://www.blogger.com/profile/15521478976312410664noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-49213842940897645532013-05-25T20:06:46.287-07:002013-05-25T20:06:46.287-07:00I've also wondered what happens to them, where...I've also wondered what happens to them, where they go, and even if it wouldn't be such a bad idea to start a commune or something. Half can't work but, half (myself included) still have a limited amount of normal functioning. I can barely hold myself up at my desk but, I could water plants and cook meals (given the right accommodation), give meds, ect to someone who couldn't do that themselves and rest up myself in between. Not ideal, but better than people ending up on the street or worse.Sara Murrayhttps://www.blogger.com/profile/02562076050636755811noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-72930763924038684052013-05-25T19:34:30.535-07:002013-05-25T19:34:30.535-07:00Beautifully said! Thank you! Beautifully said! Thank you! Sara Murrayhttps://www.blogger.com/profile/02562076050636755811noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-57769381925265167962013-05-25T11:05:11.615-07:002013-05-25T11:05:11.615-07:00I forgot to thank you so much for your post. It m...I forgot to thank you so much for your post. It means so much for me and my family, all you have done as advocate.bludgers2https://www.blogger.com/profile/08932172299012331307noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-25377092452636837492013-05-25T11:01:23.988-07:002013-05-25T11:01:23.988-07:00Just went through a PE-Dysfunction this week. Bec...Just went through a PE-Dysfunction this week. Because on Sunday I took a shower, got ready for niece's bday party and was there for 2 hours. My husband took care of my kids. I just got to talk to relatives. Well, severly crashed Monday night, bedridden, couldn't think, difficulty responding to questions, had this for 24 years the last 4 so debilitating. This disease changes so much over the years... i think researchers miss this.. escpecially only wanting to study those with no comorbidities....that rules out the really sick. this disease damages the body allowing for comorbidty conditions, (lymphoma, ibs, migraines,hypothyroidism, etc...) --- Traceybludgers2https://www.blogger.com/profile/08932172299012331307noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-80640381308916180822013-05-25T00:03:58.691-07:002013-05-25T00:03:58.691-07:00Brilliant post. I just wish more doctors would ta...Brilliant post. I just wish more doctors would take the time to read and understand about PEM. <br /><br />Six years ago I was doing relatively well - up and dressed most days and able to drive to visit friends now and again. It had taken 11 years to get to that point, very slowly increasing what I was able to do without slipping backwards. <br /><br />My doctor at the time told me that she felt I should now undertake very gentle exercise (Graded Exercise Therapy) at the local gym and explained that they would know exactly what I could and couldn't do and it would make me feel better. I attended three times and it was a disaster. After several months back in bed I even sold my car as I was unable to drive. Six years later and I am nowhere near as well as I was before GET.<br /><br />This PEM must be made a headliner where our illness is concerned. Tishahttps://www.blogger.com/profile/02215701072378117812noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-45549889645839673392013-05-24T19:52:57.921-07:002013-05-24T19:52:57.921-07:00I hope they listened.
I think people with CFS sho...I hope they listened.<br /><br />I think people with CFS should do AS MUCH AS THEY CAN SAFELY - and you come at it from ZERO.<br /><br />I increase my capability for anything by a tiny percentage - and watch myself carefully. I might try the same increase for a couple of weeks - always ready to back down.<br /><br />I will be happy when I can walk around the block.<br />ABEAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-4066841328084028922013-05-24T19:31:36.747-07:002013-05-24T19:31:36.747-07:00Thank you so much Mary. That was great.Thank you so much Mary. That was great.Anonymoushttps://www.blogger.com/profile/14810990628209830134noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-34526510429158765052013-05-24T17:56:50.439-07:002013-05-24T17:56:50.439-07:00Great testimony, Mary! Thank you for all of your t...Great testimony, Mary! Thank you for all of your testimonies through the years.<br /><br />I hate the term Post Exertional Malaise (PEM), for the reasons you gave. I love your term (your daughter's term?) Post Exertional Dysfunction. <br /><br />I think Post Exertional Relapse is pretty good, but the term suggests that the relapse will be followed by a remission. What if the relapse is permanent? Is it still a relapse? <br /><br />If a person never returns to his/her pre-exertion baseline, wouldn't it be more accurate to use the term post-exertional disease progression?Flohttps://www.blogger.com/profile/00565087657214691714noreply@blogger.comtag:blogger.com,1999:blog-1345573145957924958.post-87668763288806115712013-05-24T14:16:32.620-07:002013-05-24T14:16:32.620-07:00Post exertional dysfunction!
Sounds about right...Post exertional dysfunction! <br /><br />Sounds about right.... I was thinking of this yesterday and my best was Post Exertional Problems... my imagination was not taking me much further. Dysfunction is a much better word. :)<br /><br />Your right however - it is not the fatigue that is the main problem (at least not for me) it is the after effects of doing more than my invisible ceiling allows...... Sally Burchhttps://www.blogger.com/profile/09581869564363992356noreply@blogger.com