Like most of the fibro studies, it has a small sample size. But the findings are statistically significant, which means that, hopefully, there will be more studies into this. If a medication could be created that would target the change in glutamate levels and fix that, then maybe more people with fibro would find relief. Or a cause for the condition could be determined and an accurate diagnostic test could be created.
And in non-scientific type comments, go U-M! I <3>
ScienceDaily (Mar. 10, 2008) — Researchers at the University of Michigan Health System have found a key linkage between pain and a specific brain molecule, a discovery that lends new insight into fibromyalgia, an often-baffling chronic pain condition.
In patients with fibromyalgia, researchers found, pain decreased when levels of the brain molecule called glutamate went down. The results of this study, which appears in the journal Arthritis and Rheumatism, could be useful to researchers looking for new drugs that treat fibromyalgia, the authors say.
"If these findings are replicated, investigators performing clinical treatment trials in fibromyalgia could potentially use glutamate as a 'surrogate' marker of disease response," says lead author Richard E. Harris, Ph.D., research assistant professor in the Division of Rheumatology at the U-M Medical School's Department of Internal Medicine and a researcher at the U-M Chronic Pain and Fatigue Research Center.
The molecule glutamate is a neurotransmitter, which means it conveys information between neurons in the nervous system. When glutamate is released from one neuron, it diffuses across the space between cells, and then binds to receptors on the next neuron in line and causes the cell to become excited, or to be more active.
This molecule was suspected to play a role in fibromyalgia because previous studies had shown that some brain regions in fibromyalgia patients appear to be highly excited. One such region is the insula.
In functional magnetic resonance imaging (fMRI) studies, researchers at U-M had previously shown that the insula displays augmented activity in fibromyalgia, which means neurons in these patients are more active in this part of the brain. The U-M team hypothesized, Harris notes, that more activity among these neurons might be related to the level of glutamate in this region.
To gauge the linkage between pain and glutamate, the researchers used a non-invasive brain imaging techinique called proton magnetic resonance spectroscopy (H-MRS). H-MRS was performed once before and once following a four-week course of acupuncture or "sham" acupuncture.
Researchers used either acupuncture or sham acupuncture to reduce pain symptoms. The sham procedure involved using a sharp device to prick the skin in order to mimic real acupuncture sensations.
Following the four weeks of treatment, both clinical and experimental pain reported were reduced significantly. More importantly the reduction in both pain outcomes was linked with reductions in glutamate levels in the insula: patients with greater reductions in pain showed greater reductions in glutamate. This suggests that glutamate may play a role in this disease and that it could potentially be used as a biomarker of disease severity.
Because of the small number of participants in this study, further research should be conducted to verify the role of glutamate in fibromyalgia, Harris says.
The senior author of the study was Daniel J. Clauw, M.D., director of the U-M Chronic Pain and Fatigue Research Center. Other authors were Richard H. Gracely, Ph.D., and Seong-Ho Kim, M.D., of the U-M Department of Internal Medicine; Pia C. Sundgren, M.D., Ph.D., Yuxi Pang, Ph.D., and Myria Petrou, M.D., of the U-M Department of Radiology; Michael Hsu, M.D., of the U-M Department of Physical Medicine and Rehabilitation; and Samuel A. McLean, M.D., of the U-M Department of Emergency Medicine.
Funding came from a Department of Army grant, the National Institutes of Health, and the NIH National Center for Complementary and Alternative Medicine.
Reference: Arthritis and Rheumatism, March 2008, Volume 58, Issue 3, "Dynamic Levels of Glutamate within the Insula are Associated with Improvements in Multiple Pain Domains in Fibromyalgia."
Adapted from materials provided by University of Michigan Health System, via EurekAlert!, a service of AAAS.
Source
Monday, March 10, 2008
Tuesday, February 26, 2008
A Regular Dip In The Pool Could Benefit Fibromyalgia Sufferers
This is a small sample size (n = 33), but it shows promise that researchers are looking into potential treatments for fibromyalgia. Even more promising, these researchers plan to compare aquatic exercise with other forms of gentle exercise like tai chi.
ScienceDaily (Feb. 25, 2008) — Patients
suffering from fibromyalgia could benefit significantly from regular exercise in
a heated swimming pool, a new study shows. The findings suggest a cost effective
way of improving quality of life for patients with this often-debilitating
disorder.
Fibromyalgia is a common, painful
syndrome, with no known cause and no accepted cure. Symptoms usually involve
chronic and severe pain and tenderness in muscles, ligaments and tendons. Pain
in the neck and shoulders is common but sufferers also report problems with
sleep, anxiety and depression. More than 90 percent of sufferers are female.
Physicians usually prescribe painkillers together with exercise and relaxation
techniques, but they may also prescribe a low-dose antidepressant.
Now, Narcís Gusi of the Faculty of
Sports Sciences, at the University of Extremadura, in Cáceres, Spain and Pablo
Tomas-Carus of the Department of Sport and Health at the University of Évora,
Portugal have carried out a randomized controlled trial with a group of 33
female fibromyalgia patients to find an alternative approach. Seventeen of the
patients took part in supervised training exercises in warm water for an hour
three times a week over a period of 8 months while the remaining sixteen did no
aquatic training.
Gusi and Tomas-Carus found that this
long-term aquatic exercise program was effective in reducing symptoms and
improving the health-related quality of life of the participants. In an earlier
study, the researchers had shown that even a short-term exercise regime could
reduce symptoms but pain would return once the patients stopped the exercise
course.
"The addition of an aquatic exercise
programme to the usual care for fibromyalgia in women, is cost-effective in
terms of both health care costs and societal costs," the researchers conclude,
"appropriate aquatic exercise is a good health investment." The researchers are
yet to compare aquatic training with more accessible and cheaper forms of
exercise, such as low-impact aerobics, walking, and tai-chi.
Journal reference: Narcis Gusi and
Pablo Tomas-Carus. Cost-utility of an 8-month aquatic training for women with
fibromyalgia: a randomized controlled trial. Arthritis Research & Therapy
(in press).
Adapted from materials provided by BioMed Central/Arthritis Research
& Therapy, via EurekAlert!, a service of AAAS.
Tuesday, February 12, 2008
Food sensitivities
I'm struggling to find information on what is included in "citrus". There's a ton of information on wheat and wheat gluten out there. But there is nothing about citrus, that I have seen, except for "don't introduce your child to citrus foods until at least 12 months". In my definition of citrus, I've included strawberries, lemons, limes, pineapples, oranges, nectarines, grapefruits, and the other "typical" citrus fruits. I've also eliminated citric acid. Many times it is created from corn, but it's also made from pineapple. The source isn't specified on the label, so it's easier to cut it all out. Well, not easier, but it's definitely better on my body.
I haven't been able to find information on substitutions, either. Citrus (lemon & lime in particular) is used a lot in seafood recipes. I don't know what I can use instead of lemon juice or lime juice. Is there anything that can be substituted? Citrus breaks down the protein in the fish. I guess sugar does the same thing. I'm wondering if I can use a sugar water flavored with something instead of lemon or lime juice. Unfortunately, I think I'm going to have to go through a lot of trial and error to get this figured out.
I'm very depressed about having to eliminate wheat (citrus, too, but I'm getting over it). I know that I feel a million times better when I don't eat wheat. And I'm making progress on that front. Yesterday, I really wanted an Auntie Anne's pretzel. I figured that I could just restart my elimination today instead of yesterday. But I knew I would feel horrible, so I didn't get it. Go me.
I haven't been able to find information on substitutions, either. Citrus (lemon & lime in particular) is used a lot in seafood recipes. I don't know what I can use instead of lemon juice or lime juice. Is there anything that can be substituted? Citrus breaks down the protein in the fish. I guess sugar does the same thing. I'm wondering if I can use a sugar water flavored with something instead of lemon or lime juice. Unfortunately, I think I'm going to have to go through a lot of trial and error to get this figured out.
I'm very depressed about having to eliminate wheat (citrus, too, but I'm getting over it). I know that I feel a million times better when I don't eat wheat. And I'm making progress on that front. Yesterday, I really wanted an Auntie Anne's pretzel. I figured that I could just restart my elimination today instead of yesterday. But I knew I would feel horrible, so I didn't get it. Go me.
Friday, February 1, 2008
Wednesday, January 30, 2008
Deep Stimulation 'Boosts Memory'
I thought this was an interesting article. It shows potential promise for treating memory issues and could have positive ramifications in treating other diseases or syndromes with memory issues like fibromyalgia and CFIDS.
Electrical stimulation of areas deep within the brain could improve memory, early research suggests.
A team of doctors in Canada stumbled upon the finding while attempting to treat a morbidly obese man through deep brain stimulation (DBS).
The electrical stimulation caused the patient to experience vivid memories.
The findings, reported in the Annals of Neurology, potentially pave the way for electrical stimulation to treat disorders such as Alzheimer's disease.
"We hope it might provide benefit to patients with memory disorders," Andres Lozano Toronto Western Hospital
Lead researcher Professor Andres Lozano, of the Toronto Western Hospital, said: "This is a single case that was totally unexpected.
"We knew immediately this was important. We are sufficiently intrigued to see if this could help people with memory disorders."
The team had been trying to help a 50-year-old obese man with type 2 diabetes and sleeping disorders who had failed to respond to diet, medications and psychological help.
He had refused gastric surgery, and doctors decided deep brain stimulation, although experimental, was his best option.
DEEP BRAIN STIMULATION
Electrodes are implanted in the brain under local anaesthesia, with the patient awake so their responses can be monitored
The electrodes are stimulated by a "pacemaker" stitched into the chest
It has been used for more than a decade to treat tremor, and more recently to treat Parkinson's disease, chronic pain and depression
Side effects can include apathy, hallucinations, depression, and even compulsive gambling - but often they are temporary
It has been found to have an impact on appetite in animal tests, but has not been widely tested as a treatment for obesity in humans.
However, it has been used to treat Parkinson's disease, chronic pain, severe cluster headaches and even depression with some success.
The technique involves implanting electrodes into the brain: in this case into an area in the limbic system called the hypothalamus, which is thought to control the appetite.
When the electrodes were stimulated by electrical impulses the patient began to experience feelings of deja vu.
He then had a sudden perception of being in a park with friends. He felt younger, thought he was around 20-years-old, and his girlfriend of the time was there. He was an observer, and saw the scene in colour. As the intensity of the stimulation increased, details in the scene became more vivid.
Memory tests
Following surgery, the patient recovered for two months. But later when the electrodes were stimulated for a second time, he experienced a similar effect.
After three weeks of constant electrical stimulation the patient performed better in memory tests than he had previously done.
A year later he again performed well in memory tests when the electrodes were stimulated, but less well when they were switched off.
The results suggest it might be possible to use deep brain stimulation directly to boost memory. "We hopefully have found a circuit in the brain which can be modulated by stimulation, and which might provide benefit to patients with memory disorders," said Professor Lozano.
Professor Lozano is now leading a pilot study into whether deep brain stimulation can help people with early Alzheimer's disease. They are initially testing six patients.
Susanne Sorensen, of the Alzheimer's Society, said: "As it is difficult to experiment on the living human brain, big leaps in understanding have occasionally been made from unexpected results when treating something unrelated or observations from rare genetic diseases and unusual lesions.
"The observations of memories recovery made during this attempt to treat extreme obesity, could be just such a 'stroke of luck'."
Rebecca Wood, Chief Executive of the Alzheimer's Research Trust, welcomed the move but said further work was clearly needed.
She said: "It will be interesting to see whether this method offers any benefit to people with Alzheimer's.
"With the number of people with Alzheimer's forecast to double within a generation, we urgently need to find ways to tackle this awful disease, but research is hugely under-funded."
Story from BBC NEWS
Published: 2008/01/30 07:13:17 GMT© BBC MMVIII
Electrical stimulation of areas deep within the brain could improve memory, early research suggests.
A team of doctors in Canada stumbled upon the finding while attempting to treat a morbidly obese man through deep brain stimulation (DBS).
The electrical stimulation caused the patient to experience vivid memories.
The findings, reported in the Annals of Neurology, potentially pave the way for electrical stimulation to treat disorders such as Alzheimer's disease.
"We hope it might provide benefit to patients with memory disorders," Andres Lozano Toronto Western Hospital
Lead researcher Professor Andres Lozano, of the Toronto Western Hospital, said: "This is a single case that was totally unexpected.
"We knew immediately this was important. We are sufficiently intrigued to see if this could help people with memory disorders."
The team had been trying to help a 50-year-old obese man with type 2 diabetes and sleeping disorders who had failed to respond to diet, medications and psychological help.
He had refused gastric surgery, and doctors decided deep brain stimulation, although experimental, was his best option.
DEEP BRAIN STIMULATION
Electrodes are implanted in the brain under local anaesthesia, with the patient awake so their responses can be monitored
The electrodes are stimulated by a "pacemaker" stitched into the chest
It has been used for more than a decade to treat tremor, and more recently to treat Parkinson's disease, chronic pain and depression
Side effects can include apathy, hallucinations, depression, and even compulsive gambling - but often they are temporary
It has been found to have an impact on appetite in animal tests, but has not been widely tested as a treatment for obesity in humans.
However, it has been used to treat Parkinson's disease, chronic pain, severe cluster headaches and even depression with some success.
The technique involves implanting electrodes into the brain: in this case into an area in the limbic system called the hypothalamus, which is thought to control the appetite.
When the electrodes were stimulated by electrical impulses the patient began to experience feelings of deja vu.
He then had a sudden perception of being in a park with friends. He felt younger, thought he was around 20-years-old, and his girlfriend of the time was there. He was an observer, and saw the scene in colour. As the intensity of the stimulation increased, details in the scene became more vivid.
Memory tests
Following surgery, the patient recovered for two months. But later when the electrodes were stimulated for a second time, he experienced a similar effect.
After three weeks of constant electrical stimulation the patient performed better in memory tests than he had previously done.
A year later he again performed well in memory tests when the electrodes were stimulated, but less well when they were switched off.
The results suggest it might be possible to use deep brain stimulation directly to boost memory. "We hopefully have found a circuit in the brain which can be modulated by stimulation, and which might provide benefit to patients with memory disorders," said Professor Lozano.
Professor Lozano is now leading a pilot study into whether deep brain stimulation can help people with early Alzheimer's disease. They are initially testing six patients.
Susanne Sorensen, of the Alzheimer's Society, said: "As it is difficult to experiment on the living human brain, big leaps in understanding have occasionally been made from unexpected results when treating something unrelated or observations from rare genetic diseases and unusual lesions.
"The observations of memories recovery made during this attempt to treat extreme obesity, could be just such a 'stroke of luck'."
Rebecca Wood, Chief Executive of the Alzheimer's Research Trust, welcomed the move but said further work was clearly needed.
She said: "It will be interesting to see whether this method offers any benefit to people with Alzheimer's.
"With the number of people with Alzheimer's forecast to double within a generation, we urgently need to find ways to tackle this awful disease, but research is hugely under-funded."
Story from BBC NEWS
Published: 2008/01/30 07:13:17 GMT© BBC MMVIII
Thursday, January 24, 2008
Life has been crazy. I've been a bit stressed at work (putting it mildly!), and I've had to completely change my diet. I'm checking for food sensitivities - corn, citrus, eggs, wheat, and milk. So far corn is fine. I added citrus back in (with a vengeance, too), and I felt like crap. I was very achy and exhausted. I didn't notice an appreciable difference in finger/toe pain, but I felt worse overall. So citrus is back out, which makes me very sad. I've seen a lot of gluten-free sites, but I haven't seen anything devoted to citrus yet. What I'm looking for are substitutions. Making fish is exceptionally difficult if I can't use citrus. So. What can I use instead? Pray to whichever god/dess/being you choose that I'm not allergic to egg! I have a feeling that wheat will be another issue causer. I know that cow milk can make me sick sometimes, so I'm saving that one for last. The plan now is to add in eggs either tomorrow or Saturday. I'll give myself a few days to see how that one goes. Then I add in wheat, which I have been craving so incredibly much!
When the spouse doesn't drive me to the train, I take two trains to get to work. When I do that, I pass by an Auntie Anne's stand morning and night. When the spouse doesn't drive me, I only smell those ooey gooey delicious pretzels at night. I am dying to have one. Which means that wheat is probably right out. From what I've been reading, the foods you crave are typically the ones you are allergic to. For me that's candy (the fruity citrusy kind), strawberries, and bread in all its glorious shapes and forms.
My dad found out that he's allergic/has sensitivities to wheat and milk the end of last week. Sometimes these things can be hereditary, so I'm not exactly hopeful for adding wheat or milk back in, which means no Auntie Anne's for me. :( Unless I get it without butter, which I just don't think is possible.
I miss my Edy's strawberry popsicles. Those were my bedtime snacks for a long, long time. The spouse would eat his ice cream, and I would have a popsicle because I can't eat ice cream. Now I have, well, nothing when he eats ice cream. I think that I'll start having applesauce. I need to buy a big ole jug. The little cups are quite convenient, but four ounces of applesauce is singularly unsatisfying.
Anyway. This is quite disjointed. I'm here. I'm muddling through. And something I had to eat today is not agreeing with my digestive system. I think it was the chips. :(
When the spouse doesn't drive me to the train, I take two trains to get to work. When I do that, I pass by an Auntie Anne's stand morning and night. When the spouse doesn't drive me, I only smell those ooey gooey delicious pretzels at night. I am dying to have one. Which means that wheat is probably right out. From what I've been reading, the foods you crave are typically the ones you are allergic to. For me that's candy (the fruity citrusy kind), strawberries, and bread in all its glorious shapes and forms.
My dad found out that he's allergic/has sensitivities to wheat and milk the end of last week. Sometimes these things can be hereditary, so I'm not exactly hopeful for adding wheat or milk back in, which means no Auntie Anne's for me. :( Unless I get it without butter, which I just don't think is possible.
I miss my Edy's strawberry popsicles. Those were my bedtime snacks for a long, long time. The spouse would eat his ice cream, and I would have a popsicle because I can't eat ice cream. Now I have, well, nothing when he eats ice cream. I think that I'll start having applesauce. I need to buy a big ole jug. The little cups are quite convenient, but four ounces of applesauce is singularly unsatisfying.
Anyway. This is quite disjointed. I'm here. I'm muddling through. And something I had to eat today is not agreeing with my digestive system. I think it was the chips. :(
Friday, January 4, 2008
Bitch, bitch, bitch
I hurt. The weather is changing, and I feel it all over. Plus the moon is waning. I feel better during the full moon for whatever reason.
Monday, December 3, 2007
FDA Considers Easing Curbs on Drug Makers
The Washington Post ran an article Saturday about research on off-label uses for prescription drugs. Of all the medications that I take, only one is used for its intended purpose - my thyroid medication. I had to have my doctor work with my insurance company so I could have one of those medications covered (out of pocket, it's about $300 for a two month supply; with insurance, it's $57). Off-label uses of medications are, as you can imagine, important to me.
So, I think I'm in favor of drug companies giving doctors information on research they've done regarding off label uses. There are many medications out there, and doctors may not realize that they can help a patient if they just had more knowledge about off-label usage.
Here's the link to the article:
Research on Off-Label Use Could Be Sent to Doctors
By Christopher LeeWashington Post Staff WriterSaturday, December 1, 2007; A04
The Food and Drug Administration is considering allowing pharmaceutical makers to provide doctors with medical journal studies of unapproved uses for drugs, a move critics say would undermine long-standing restrictions on marketing medicines for "off-label" purposes.
Under a draft "guidance" prepared by the FDA, drug and medical device manufacturers could distribute unabridged reprints of peer-reviewed research from reputable medical journals as long as the articles were not written, edited or otherwise "significantly influenced" by the manufacturers or people with financial ties to them. No other promotional materials could be attached to the reprints, which would have to be labeled as describing uses for the products that have not been approved by the FDA.
The proposal would be a break with the FDA's prohibition on the marketing of drugs and medical devices for unapproved purposes, which dates to 1938. It is legal for doctors to prescribe approved drugs for off-label uses, however, and the practice is common for some types of drugs.
In 1997, Congress created a temporary exception allowing companies to distribute reprints so long as they submitted them to the FDA for advance review and had formally asked the FDA to approve the new use. That exception expired in 2006. In recent years, the marketing restrictions have been the subject of legal challenges on free speech grounds.
Rep. Henry A. Waxman (D-Calif.), chairman of the House Committee on Oversight and Government Reform, said creating a new path to promote off-label uses could improperly influence doctors' prescribing habits. In a letter yesterday, Waxman urged FDA Commissioner Andrew C. von Eschenbach to suspend drafting of the new guidance and cooperate with a committee inquiry into the issue.
The draft guidance "would open the door to abusive marketing practices that will jeopardize safety, undermine public health, and lead to an increase in unapproved uses of powerful drugs," Waxman wrote.
Companies would be less likely to conduct definitive scientific studies and seek formal FDA approval for alternative uses of drugs and devices if they could promote and profit from off-label uses anyway, Waxman contended. He said the proposal could grant undue influence to incomplete or distorted studies, some of them industry-funded. And he pointed to several high-profile cases in which drugs such as Vioxx and Celebrex were trumpeted in flawed journal articles that either underreported dangers or overstated benefits.
"While there may need to be a balance between First Amendment and protection of the public health," Waxman wrote, "the answer is not to open the door to unrestricted dissemination of potentially questionable information about drug safety and effectiveness."
FDA spokeswoman Rita Chappelle said the agency does not comment on letters from Congress.
Ken Johnson, senior vice president of the Pharmaceutical Research and Manufacturers of America, said it is "premature" to comment specifically on the FDA draft, but that providing the articles to doctors could help them make better prescribing decisions.
"These off-label uses or treatment regimens may be important and may even constitute a medically recognized standard of care," the guidance says.
Some people depend on off-label uses of drugs, said Diane Dorman, vice president for public policy at the National Organization for Rare Disorders.
"There are nearly 30 million people in the United States affected by almost 7,000 known rare diseases," Dorman said. "Consequently, most of those disease states are treated off-label because there is no therapy specific for their disease. So getting that information to physicians, I would consider to be very, very important for the patient."
So, I think I'm in favor of drug companies giving doctors information on research they've done regarding off label uses. There are many medications out there, and doctors may not realize that they can help a patient if they just had more knowledge about off-label usage.
Here's the link to the article:
And here's the text of the article (I don't know how to do cuts like I do on LJ):
FDA Considers Easing Curbs on Drug MakersResearch on Off-Label Use Could Be Sent to Doctors
By Christopher LeeWashington Post Staff WriterSaturday, December 1, 2007; A04
The Food and Drug Administration is considering allowing pharmaceutical makers to provide doctors with medical journal studies of unapproved uses for drugs, a move critics say would undermine long-standing restrictions on marketing medicines for "off-label" purposes.
Under a draft "guidance" prepared by the FDA, drug and medical device manufacturers could distribute unabridged reprints of peer-reviewed research from reputable medical journals as long as the articles were not written, edited or otherwise "significantly influenced" by the manufacturers or people with financial ties to them. No other promotional materials could be attached to the reprints, which would have to be labeled as describing uses for the products that have not been approved by the FDA.
The proposal would be a break with the FDA's prohibition on the marketing of drugs and medical devices for unapproved purposes, which dates to 1938. It is legal for doctors to prescribe approved drugs for off-label uses, however, and the practice is common for some types of drugs.
In 1997, Congress created a temporary exception allowing companies to distribute reprints so long as they submitted them to the FDA for advance review and had formally asked the FDA to approve the new use. That exception expired in 2006. In recent years, the marketing restrictions have been the subject of legal challenges on free speech grounds.
Rep. Henry A. Waxman (D-Calif.), chairman of the House Committee on Oversight and Government Reform, said creating a new path to promote off-label uses could improperly influence doctors' prescribing habits. In a letter yesterday, Waxman urged FDA Commissioner Andrew C. von Eschenbach to suspend drafting of the new guidance and cooperate with a committee inquiry into the issue.
The draft guidance "would open the door to abusive marketing practices that will jeopardize safety, undermine public health, and lead to an increase in unapproved uses of powerful drugs," Waxman wrote.
Companies would be less likely to conduct definitive scientific studies and seek formal FDA approval for alternative uses of drugs and devices if they could promote and profit from off-label uses anyway, Waxman contended. He said the proposal could grant undue influence to incomplete or distorted studies, some of them industry-funded. And he pointed to several high-profile cases in which drugs such as Vioxx and Celebrex were trumpeted in flawed journal articles that either underreported dangers or overstated benefits.
"While there may need to be a balance between First Amendment and protection of the public health," Waxman wrote, "the answer is not to open the door to unrestricted dissemination of potentially questionable information about drug safety and effectiveness."
FDA spokeswoman Rita Chappelle said the agency does not comment on letters from Congress.
Ken Johnson, senior vice president of the Pharmaceutical Research and Manufacturers of America, said it is "premature" to comment specifically on the FDA draft, but that providing the articles to doctors could help them make better prescribing decisions.
"These off-label uses or treatment regimens may be important and may even constitute a medically recognized standard of care," the guidance says.
Some people depend on off-label uses of drugs, said Diane Dorman, vice president for public policy at the National Organization for Rare Disorders.
"There are nearly 30 million people in the United States affected by almost 7,000 known rare diseases," Dorman said. "Consequently, most of those disease states are treated off-label because there is no therapy specific for their disease. So getting that information to physicians, I would consider to be very, very important for the patient."
Sunday, December 2, 2007
Football
I love football. I love big hits. I love the violence. I love the brutality of it. This is funny because neither my high school nor my college had football. I knew nothing about football until I met the spouse. 2005 is when I learned about the game and how it works. 2006 is the season I went crazy for it. But what continually amazes me is how often people DON'T get hurt. I just saw Fred Taylor get somersaulted by Bob Sanders by the sideline. He landed on his hand and rolled. But he didn't get hurt. That always blows me away.
Even though I LOVE big hits (they make me giggle), I don't like seeing someone get hurt. I can't watch Theisman's leg get broken. It turns my stomach. But I love the sound of a really good hit. And watching it in slow motion when I can see how their bodies contort? Most excellent.
My favorite player is Dick Butkis. But I wear Nathan Vasher's jersey every Sunday. It was a Christmas gift last year and was not easy to find. Even after he returned a missed field goal for 108 yards in 2005, not many people like him or want to wear his jersey.
Even though I LOVE big hits (they make me giggle), I don't like seeing someone get hurt. I can't watch Theisman's leg get broken. It turns my stomach. But I love the sound of a really good hit. And watching it in slow motion when I can see how their bodies contort? Most excellent.
My favorite player is Dick Butkis. But I wear Nathan Vasher's jersey every Sunday. It was a Christmas gift last year and was not easy to find. Even after he returned a missed field goal for 108 yards in 2005, not many people like him or want to wear his jersey.
Tuesday, November 27, 2007
Updation Nation
I am a bit behind on the whole posting thing. I've neglected ElJay, Facebook, and Blogspot. :(
Life is plugging along. We spent a great Thanksgiving weekend in Michigan with my family - saw my baby sister's house and my baby brother's girlfriend. The house is cute - it's a ranch house with a garage that got converted into a family room, so they're planning on adding a dining room table to that room and putting an island in the kitchen. The house is heated by a wood burning stove, which is cool. It's nice standing by the stove when your feets are cold. Their property is great - about five acres. The dogs LOVED it. They had things to sniff, things to bark at (still haven't figured out what they were barking at...), and places to pee. What else do you need? The girlfriend is nice. She's tall. I felt short. I am officially The Shortest Person in my family. By at least six inches. She dwarfs the sister also, making her The Second Shortest Person.
The weekend was nice and provided the inspiration for our gift to my parents. Shhh. It's a secret. It'll blow them away and create many tears in their eyes, which is always the goal. It'll be a lot of work for us, and, quite frankly, I'm dreading that. It'll be worth it. I hope. It better be. It's going to be Not Cheap. But that's ok. They deserve it.
We put up Christmas lights on the outside of our house Sunday. I was WORN OUT the rest of the day. I almost fell asleep during the bad bits of the Bears game. I stayed awake during most of it. When we moved upstairs to watch the Patriots almost lose to the Eagles, I could not keep my eyes open. The going to bed late and doing stuff outside things just caught right up to me and knocked me out. The spouse says it's because I'm getting a cold. I know it's the exercise intolerance inherent in fibro. The whole getting sick thing doesn't help, but colds don't wipe me out like that. Bronchitis doesn't wipe me out like that. I just used up all my spoons and had to pay for it.
Physically, I'm doing ok. It's kind of funny. I see people on Thanksgiving that I see only every other year. One of my great aunts asked how I was feeling and what kind of symptoms I have. Another aunt asked about the symptoms. I totally drew a blank! I know they're just trying to understand what I feel like. But all the knowledge and research I've done completely deserted me. All I could come up with was "I'm constantly achy and tired". I forgot about the cognitive issues, the sensitivity to medication and chemicals, and all the other things I live with every day. I think that's a good thing because it means that I don't dwell on it. I can't avoid the fatigue, sometimes bone-wearying, or the pain because they are omnipresent. I guess I've accepted the changes that fibro has wrought in my life; they've become normal. I don't know if that's good or bad. I really don't. It just is, and it's probably neither good nor bad.
I'm starting my two weeks of Feeling Not Good. It coincides with my hormones nicely, so I can predict it. It's backwards from what my doctor predicted (feel good after getting your period, feel bad before), but it coincides with what someone else I know experiences.
I'm trying to work out more. Everything I have been reading tells me that I'll feel better within about six weeks of starting to work out. The problem is starting. I feel good after I work out. I (kind of) feel good while I'm working out. But I feel so awful beforehand that it's hard to just start. I know that I lack motivation and all that, but, seriously, when's the last time you worked out when you had the flu? See? Not so fun. And I don't have the luxury of waiting until I feel better. I'm not going to all of a sudden get better one day. This is kinda how it's going to be until some serious advances happen regarding medicine and treatment options. Which is why I don't think about it.
On that note.....I am signing off. I'm glad my drafts get autosaved. :) It took me about three hours to write this!
Life is plugging along. We spent a great Thanksgiving weekend in Michigan with my family - saw my baby sister's house and my baby brother's girlfriend. The house is cute - it's a ranch house with a garage that got converted into a family room, so they're planning on adding a dining room table to that room and putting an island in the kitchen. The house is heated by a wood burning stove, which is cool. It's nice standing by the stove when your feets are cold. Their property is great - about five acres. The dogs LOVED it. They had things to sniff, things to bark at (still haven't figured out what they were barking at...), and places to pee. What else do you need? The girlfriend is nice. She's tall. I felt short. I am officially The Shortest Person in my family. By at least six inches. She dwarfs the sister also, making her The Second Shortest Person.
The weekend was nice and provided the inspiration for our gift to my parents. Shhh. It's a secret. It'll blow them away and create many tears in their eyes, which is always the goal. It'll be a lot of work for us, and, quite frankly, I'm dreading that. It'll be worth it. I hope. It better be. It's going to be Not Cheap. But that's ok. They deserve it.
We put up Christmas lights on the outside of our house Sunday. I was WORN OUT the rest of the day. I almost fell asleep during the bad bits of the Bears game. I stayed awake during most of it. When we moved upstairs to watch the Patriots almost lose to the Eagles, I could not keep my eyes open. The going to bed late and doing stuff outside things just caught right up to me and knocked me out. The spouse says it's because I'm getting a cold. I know it's the exercise intolerance inherent in fibro. The whole getting sick thing doesn't help, but colds don't wipe me out like that. Bronchitis doesn't wipe me out like that. I just used up all my spoons and had to pay for it.
Physically, I'm doing ok. It's kind of funny. I see people on Thanksgiving that I see only every other year. One of my great aunts asked how I was feeling and what kind of symptoms I have. Another aunt asked about the symptoms. I totally drew a blank! I know they're just trying to understand what I feel like. But all the knowledge and research I've done completely deserted me. All I could come up with was "I'm constantly achy and tired". I forgot about the cognitive issues, the sensitivity to medication and chemicals, and all the other things I live with every day. I think that's a good thing because it means that I don't dwell on it. I can't avoid the fatigue, sometimes bone-wearying, or the pain because they are omnipresent. I guess I've accepted the changes that fibro has wrought in my life; they've become normal. I don't know if that's good or bad. I really don't. It just is, and it's probably neither good nor bad.
I'm starting my two weeks of Feeling Not Good. It coincides with my hormones nicely, so I can predict it. It's backwards from what my doctor predicted (feel good after getting your period, feel bad before), but it coincides with what someone else I know experiences.
I'm trying to work out more. Everything I have been reading tells me that I'll feel better within about six weeks of starting to work out. The problem is starting. I feel good after I work out. I (kind of) feel good while I'm working out. But I feel so awful beforehand that it's hard to just start. I know that I lack motivation and all that, but, seriously, when's the last time you worked out when you had the flu? See? Not so fun. And I don't have the luxury of waiting until I feel better. I'm not going to all of a sudden get better one day. This is kinda how it's going to be until some serious advances happen regarding medicine and treatment options. Which is why I don't think about it.
On that note.....I am signing off. I'm glad my drafts get autosaved. :) It took me about three hours to write this!
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