Sophia3

This is an excellent site for information in order to gain or maintain disability issues. http://groups.yahoo.com/group/Disinissues/?yguid=61216808 Here is an example from their link on filling out the Daily Living Activities Questionnaire ~~~~~~~~~ Answer in terms of your worst days, not your good days. Use word processing rather than trying to answer in the spaces provided. Restate the question, with the section and number of the question, and then give your answer. Explain that you are using the computer because it is easier for you. It IS easier, because you can copy and paste, for one thing, since several forms have similar questions! And if, as is likely for unlisted impairments, you are denied on initial claim, you will be very happy you have the answers already typed, needing only an update, for your recon and hearing, if it gets to that stage. Remember not to say how you have adapted, but what functions you have lost. Ask for help on this - it is easy for us to forget how we have worked around our problems. For each section, give specific examples of what you can't do. Don't give your adaptation, but what you can't do. Here are some examples, to give you some ideas for describing the facts in your own case: Do not say "I must sit to prepare meals." Do say: "I can no longer stand at the kitchen counter to prepare meals." Do say: "I can no longer make cookies." Do not say: " I bake cake because it is easier than making cookies." Do not say: "I shop for myself." Do say: " I buy only a few items at a time. I can't carry a lot of bags, and, more important, I can't put away a lot of groceries when I get home. I can't spend a lot of time in the store, either, so I make short trips for just a few things at a time." Do not say: "I do laundry." Do say: " I can do only one load of laundry at a time, although I used to do all my laundry at once. I cannot put away the clean clothes the same day as I do the laundry. That is now a task for another day. I no longer keep up with the laundry, since I have to wait for a day I feel up to the task, and those good days are not necessarily when I need clean clothes." Do not say: "I make my own meals." Do say: " I no longer make complete meals and no longer invite guests for dinner. I eat simpler foods so that I don't need to spend as much time preparing meals. Sometimes, I need to rest before I can finish making something to eat. Occasionally, I have fallen asleep and not gone back to eat what I was preparing. I lose track of what I was doing very easily and have often forgotten that I put water up to boil." The answer to "do you watch TV" is NOT yes. The answer is something like this: I can no longer watch shows as long as an hour because I can no longer maintain attention that long. Even when I try to watch what used to be favorite shows, I now fall asleep, or else, if I manage to stay awake, I lose track of the plot. Loud commercials bother me physically now, exacerbating my pain. Another advantage of using word processing is that you should give specific examples of your loss of functioning, not just the answers to the questions as written. The spaces the forms have for answers are ok for yes or no answers, but you need to explain why you can't work!!!

The reason I posted this older article from around 1996, is because it was the FIRST TO SHOW A LINK with autonomic problems and CFS or CFIDS (outside of the CFIDS Chronicle and Johns Hopkins study) It was PROOF there was documentation for many with CFS/CFID (via tilt table testing) Also, Dr. Streeten didn't realize he was studying CFS pts and that he and Bell were on similar pages, for years. Sadly, Streeten came out of retirement to try and tie the autonomic and CFS connections together since he had written books on autonomic problems YEARS ago. He was a great autonomic doc and is sadly missed. I enjoyed his speech in the NDRF conference tapes...what a sweet old guy....I loved how he mentioned "if you can't stand in line, it's tough to get around in this world" or something to that affect. He really GOT the O.I. They didn't call him the father of dysautonomia for nothing!!! Also, it was easier for people not into technical medical jargon to read and understand and for family members. I had kept it bookmarked for years but it got taken off it's original site years ago. I also always loved the title for it really is a unique "invisible" illness. Thanks S

By Dr. Bell Literature Review There were several lectures at the recent AACFS meetings that were so exciting they made my socks roll up and down. The CFS scientific community is maturing and beginning to put together the knowledge that has existed in a fragmentary way over the past twenty years. The first outstanding lecture was by the Centers for Disease Control and Prevention and delivered by Dr. J. Jones, called the Dubbo Infection Outcomes Study. Dubbo is a region of Australia where several illnesses that seem to initiate CFS are seen. It is a prospective study with 101 patients with EBV mononucleosis, 88 patients with Ross River virus, and 65 patients with Q fever followed over time to see who develops the symptom pattern of CFS. At 12 months, 6% of subjects met criteria for CFS. The most important predictor of developing CFS was the severity of initiating infection, and emotions were not a predictive factor. This outstanding study is formalizing the post-infective aspect of CFS. The study is not yet finished, and we will have to eagerly await full results: is there a difference between the CFS after EBV or the CFS after Ross River virus? What is the reason some people get CFS and others do not? What role does abnormal interferon or genetic markers play? Stay tuned. The second lecture that was outstanding in my opinion was about Hepatitis C. Dr. Charles Raison presented a study he and co-workers have been working on concerning the treatment of hepatitis C with interferon (IFN). All patients had active hepatitis C, and prior to treatment, 22% had moderate fatigue with 3% bad enough to qualify for the diagnosis of CFS. During interferon treatment, the fatigue had risen to 70% with 30% having the severity and associated symptoms of CFS. Therefore, IFN clearly causes fatigue, worsening fatigue, and/or CFS-like symptoms in this group of patients with a known active infection with hepatitis C. Well, we sort of knew that already, so it is not that big a deal. What is a big deal is what Dr. Raison said. The patients were monitored by measuring the viral load, and those patients with difficulty in clearing hepatitis C virus with interferon were the ones more likely to develop CFS type symptoms. If proven true in subsequent and follow-up studies, this is remarkable. It implies that hepatitis C is a CFS-causing infection like the ones seen in the Dubbo study. Moreover, there seems to be a link between post-infectious fatigue, interferon, and difficulty clearing the virus (immune difficulties) even with interferon treatment. I would hope that this group of researchers is continuing to look into these relationships. This study is also a great reason why we cannot have blinders on ? we need to look at experiences from illnesses causing the symptom of fatigue such as cancer and specific infections like hepatitis C. The third and fourth superb studies followed. The third was presented by Dr. Julian Stewart titled ?Regional blood volume and peripheral blood flow?. Dr. Stewart has been studying autonomic intolerance in young people with CFS. What he has shown with tilt-table testing is that there are regional changes in blood flow that are not normal. Among these is a marked reduction in thoracic blood volume related to inadequate cardiac venous return. I love it. Perhaps even those patients who measure a normal circulating blood volume may, in effect, be hypovolemic in the heart and lungs. Kazuhiro Yoshiuchi presented a paper shortly after Dr. Stewart showing a reduction in cerebral blood flow in CFS patients.

Titled, No Other Illness Like This One This article is several years old but I am happy to rediscover it online. It was too long to cut and paste and take up space here, but I must warn you. The text is white on a black background (NOT VIEWER FRIENDLY) So what I did was cut and pasted the article and EMAILED myself for easier viewing. Dr. Streeten-mentioned in the article-- has sinced passed away and was an autonomic specialist. He worked closely with the founder of NDRF. http://www.geocities.com/vitamvas/cfidsnews.html

Opus Glad the nutrition deal has helped you though, many of us have 'been there and done that' with all sorts of diet. I have been studying diet and nutrition since 1980 (prepots I had weight problems and NOW struggle to eat and maintain weight at the age of 48) Nutrition stuff used to help me CONTROL things greatly until all **** broke loose in the late 80's and I became disabled in 1990. Now the stricter health diets made me worse, and the POTS diet HELPS some days (high sodium, moderate carbs, fluids, gatorade, coffee in the AM (half caffeine) Though due to inner ear junk, I have to curtail sodium sometimes. Like Nina said, we are all different and you need to watch "natural supplements". If it's in pill form it ain't natural!! LOL. If an individualized diet helped all, we would all follow it. Though we all share MANY MANY SYMPTOMS, the unknown etiology often means we DON'T share the genetic trigger for our POTS or NCS, etc. On another note, you mentioned an Amish pracitioner. My late father used to see one in the late 70's or early 80's in Indiana. His name was Solomon Wicke. He sold Nature's Sunshine products and in those days, worked for 'free' or accepted donations and worked out of a barn. Base on iridology, he helped my father with painful sciatic problems and my mom with a gall bladder problem. Just wondered if you saw the same man. Thanks Sophia

No, I have not tried Ritalin but when I have to take Sudafed (Plain kind w/o antihistamine) it revs me up so much I have to take extra beta blocker and xanax to counteract the jitters. Ritalin passes the blood brain barrier (Unlike Midodrine as they are very much related) but since Midodrine does NOT pass the BBB, most of us do not get the jitters/worsening of tremors that Ritalin and a vast variety of stimulants can cause. This is way more than you wanted to know wasn't it?