"Through my heart's work of writing, I share with you my complex journey a top the mountain, sliding down, crawling up, & living through the realms of Autoimmune Arthritic Illnesses. Taming "The Wolf" Thru each Day... One Step at a Time … Together We Are Learning to Survive. Please follow along, to New Beginnings - looking Thru the Window Pane of Pain in life where we shall find our journey leading us to - New Perspectives
I appreciate your thoughts and prayers so much. It is difficult for me to be this far away. They live about 30 out of Corpus, so they are ove 6 hours away from me. When I find out more, I will post and let you know...
Hugs to All, Rhia
Hello to everyone! By now, me mentioning that we have wrangled our first "stump" and jumped over it on the health care reform bill, is probably "old news". :)
But, I still want to express my feelings, emotions, faith in us as a nation, and try and look at the positive side of this history making bill, since this past week has been such a tragic one.
I have written in my blog a bit about the events of this past week. Ft. Hood TX is only about 50 miles from me. Most people in this nation are familiar with Waco Texas, due to the fact about the "Branch Davidians" and David Karesh. The horrific events that took place in February 2003. Just in case you don't remember the nightmare that took place there here is a link that gives details of him, as well as the events that unfolded on the "Davidian Ranch" in 1993.
http://en.wikipedia.org/wiki/David_Koresh
Like many other states, Texas has had their share of horrific events, man caused and nature caused. We can look at Galveston Tx, that has now suffered two massive hurricanes that totally destroyed the city. One in 1900 and again in 1915, plus the most recent one "Ike" in 2008, that once again obliterated the entire community.
We have also had several "man made" issues, from the woman in Houston that drowned her 5 children due to post pardum severe depression/psychosis, Andrea Yates. That story rocked not only Texas, but our entire nation, leaving us totally shocked and confused.
Then their was the "Texas Cadet" murder by Diane Zamora and her boyfriend David Graham. Both of the in the Texas Cadet program, yet due to whom Diane considered a "rival" to her relationship, they both killed Andrea Jones in December 1995. This act of jealousy and violence took place again not far from where I live, in the Mansfield Tx area.
Here is a link to more information on this:
http://en.wikipedia.org/wiki/Diane_Zamora
OF course in 1966, there was the young man who climbed atop the University of Texas' Bell Tower. Charles Whitman then opened fire and mass murdered a number of people, along with wounding many more.
Here is a link to that story:
http://en.wikipedia.org/wiki/Charles_Whitman
Now we add to that "limited list" of outrageous and shocking horrors, what went on at Ft. Hood TX. Our state and our nation, plus around the world are still in shock and disbelief this one man, who has not only been in the Army serving for many years, but also a psychiatrist, could do something as evil as murder in cold blood his peers right their on the largest Army Base in the World.
Of course, now we have the monumental House vote that approved the first step of health care reform for our nation. Now it moves onto the Senate to pass their view of the bill, then comes to combining both, to go back to the House and Senate for final approval, and onto President Obama, for him to sign and make it officially law! Lots of steps to go, but this first one was extremely important.
Other good news this week, includes the breakthrough in the first ever of it's kind Lupus medication. After succesfully passing through all of it's clinical trials and being very positive on all counts, it is almost ready to go in front of the FDA for final approval, and then THANK GOODNESS ONTO US WITH LUPUS AS PATIENTS!
There are also a couple of other Lupus drug trials going on, some in Great Britan, along with a few more from what I have read here in the United States. I am so thrilled about these one of a kind, breakthrough medications, for it has been over 5 decades since any kind of clinical trial, medication, or much research has been done for SLE-Lupus patients.
There have also been many articles about more research and positive outcomes in the fight against Fibromylagia and Chronic Fatigue Syndrome! Our nation, along with others are really moving ahead on these syndromes, and since I am also a sufferer of FM and CFS, along with Lupus, Sjogren's, and Raynauds, it is music to my ears to hear this incredible news.
Other than that, we have had almost near perfect weather this past week. It has been sunny, with highs in the upper 70's, and the lows at night in the mid to upper 50's, which makes for pleasant conditions as far as sleeping.
Not too hot during the day, and not too cold either... today we do have another cool front moving in and it is cloudy, as we expect some rain with this one.
As far as my health and ongoing medical issues, I have been fighting another Lupus flare, off and on now for weeks. This one seems to be milder, but it just seems it is lingering longer. I do feel either a combination of meds are working, or the Methotrexate is working. I have an appt. with my PCP on the 30th. I want a consultation as to a game plan for my conditions. Keep me in mind over the next weeks, as I gather concerns, questions, & hope for my PCP to support a plan for me to get better.
Philadelphia, October 20, 2009—Drug company Human Genome Sciences (HGS) and GlaxoSmithKline (GSK) today reported details of the first of their two crucial Phase 3 trials of belimumab (Benlysta™) in people with systemic lupus erythematosus at the American College of Rheumatology’s (ACR) annual scientific meeting in Philadelphia.
“There is a lot of encouraging information in here for the 1.5 million Americans with lupus,” said Lupus Research Institute (LRI) President Margaret G. Dowd at the meeting.
HGS first reported on the clinical trial (BLISS-52) results this summer. If findings from the longer “BLISS-76” trial due in November are positive as well, the company can apply to the Food and Drug Administration (FDA) for drug approval in 2010—possibly the first drug approval for lupus in more than 50 years.
“The BLISS-52 Phase 3 results presented at ACR demonstrated that the efficacy of treatment with belimumab plus standard of care was superior to that of placebo [dummy drug] plus standard of care," explained David C. Stump, MD, executive vice president of research and development at HGS in a statement. “These data were statistically significant and were strongly supported across multiple measures of clinical effect and multiple time-points.”
The company shared these and other trial details on belimumab’s ability to significantly reduce lupus disease activity and the rate of lupus flares, as well as to lower the rate of flares and significantly delay the length of time to the first flare.
“Belimumab’s apparent capacity to lower the use of the dreaded corticosteroid, prednisone, is also notable,” said Dowd, who has heard from the thousands of LRI members that lessening the dosage of this often lifesaving but complication-ridden medicine is a priority. In the trial, a greater percentage of participants taking belimumab were able to reduce their prednisone use than those taking the placebo.
LRI Program Director Catherine Anastasia noted that the significant reductions in fatigue with belimumab would also come as particularly welcome news. “The fatigue of lupus can be draining and debilitating. A route out of the exhaustion would make a big difference in quality of life for so many.”
The company additionally reported that people taking belimumab generally tolerated the drug well.
“This is the first drug shown to be effective in ameliorating the signs and symptoms of lupus in decades,” said Daniel J. Wallace, MD, clinical professor of medicine at the David Geffen School of Medicine at UCLA. “It represents a breakthrough for finally utilizing a methodology that enables researchers to demonstrate disease improvement. This will benefit lupus patients and their doctors.”
BLISS-52 and BLISS-76 are the largest clinical trials ever conducted in people with lupus.
Dowd and other LRI representatives are among the thousands of attendees—physicians, health professionals, and scientists—at the Philadelphia meeting designed to advance rheumatology through programs of education, research, advocacy and practice support.
The new details of the trial are available here.
EARLIER this month, a study published in the journal Science answered a question that medical scientists had been asking since 2006, when they learned of a novel virus found in prostate tumors called xenotropic murine leukemia virus-related virus, or XMRV: Was it a human infection?
XMRV is a gammaretrovirus, one of a family of viruses long-studied in animals but not known to infect people. In animals, these retroviruses can cause horrendous neurological problems, immune deficiency, lymphoma and leukemia. The new study provided overwhelming evidence that XMRV is a human gammaretrovirus — the third human retrovirus (after H.I.V. and human lymphotropic viruses, which cause leukemia and lymphoma). Infection is permanent and, yes, it can spread from person to person (though it is not yet known how the virus is transmitted).
That would have been news enough, but there was more. XMRV had been discovered in people suffering from chronic fatigue syndrome, a malady whose very existence has been a subject of debate for 25 years. For sufferers of this disease, the news has offered enormous hope. Being seriously ill for years, even decades, is nightmarish enough, but patients are also the targets of ridicule and hostility that stem from the perception that it is all in their heads. In the study, 67 percent of the 101 patients with the disease were found to have XMRV in their cells. If further study finds that XMRV actually causes their condition, it may open the door to useful treatments. At least, it will be time to jettison the stigmatizing name chronic fatigue syndrome.
The illness became famous after an outbreak in 1984 around Lake Tahoe, in Nevada. Several hundred patients developed flu-like symptoms like fever, sore throat and headaches that led to neurological problems, including severe memory loss and inability to understand conversation. Most of them were infected with several viruses at once, including cytomegalovirus, Epstein-Barr and human herpesvirus 6. Their doctors were stumped. The Centers for Disease Control and Prevention, the nation’s presumed bulwark against emerging infectious diseases, dismissed the epidemic and said the Tahoe doctors “had worked themselves into a frenzy.” The sufferers, a C.D.C. investigator told me at the time, were “not normal Americans.”
When, by 1987, the supposed hysteria failed to evaporate and indeed continued erupting in other parts the country, the health agency orchestrated a jocular referendum by mail among a handful of academics to come up with a name for it. The group settled on “chronic fatigue syndrome” — the use of “syndrome” rather than “disease” suggested a psychiatric rather than physical origin and would thus discourage public panic and prevent insurers from having to make “chronic disbursements,” as one of the academics joked.
An 11th-hour plea by a nascent patient organization to call the disease by the scientific name used in Britain, myalgic encephalomyelitis, was rejected by the C.D.C. as “overly complicated and too confusing for many nonmedical persons.”
Had the agency done nothing in response to this epidemic, patients would now be better off. The name functioned as a kind of social punishment. Patients were branded malingerers by families, friends, journalists and insurance companies, and were denied medical care. (It’s no coincidence that suicide is among the three leading causes of death among sufferers.) Soon the malady came to be widely considered a personality disorder or something that sufferers brought upon themselves. A recent study financed by the C.D.C. suggested that childhood trauma or sexual abuse, combined with a genetic inability to handle stress, is a key risk factor for chronic fatigue syndrome.
Many people don’t realize how severe this illness can be. It is marked by memory and cognition problems, and physical collapse after any mental or physical exertion. The various co-infections that occur only make matters worse. Many patients are bedridden. And recovery is rare. A significant number of patients have been ill for more than two decades.
XMRV is a gammaretrovirus, one of a family of viruses long-studied in animals but not known to infect people. In animals, these retroviruses can cause horrendous neurological problems, immune deficiency, lymphoma and leukemia. The new study provided overwhelming evidence that XMRV is a human gammaretrovirus — the third human retrovirus (after H.I.V. and human lymphotropic viruses, which cause leukemia and lymphoma). Infection is permanent and, yes, it can spread from person to person (though it is not yet known how the virus is transmitted).
That would have been news enough, but there was more. XMRV had been discovered in people suffering from chronic fatigue syndrome, a malady whose very existence has been a subject of debate for 25 years. For sufferers of this disease, the news has offered enormous hope. Being seriously ill for years, even decades, is nightmarish enough, but patients are also the targets of ridicule and hostility that stem from the perception that it is all in their heads. In the study, 67 percent of the 101 patients with the disease were found to have XMRV in their cells. If further study finds that XMRV actually causes their condition, it may open the door to useful treatments. At least, it will be time to jettison the stigmatizing name chronic fatigue syndrome.
The illness became famous after an outbreak in 1984 around Lake Tahoe, in Nevada. Several hundred patients developed flu-like symptoms like fever, sore throat and headaches that led to neurological problems, including severe memory loss and inability to understand conversation. Most of them were infected with several viruses at once, including cytomegalovirus, Epstein-Barr and human herpesvirus 6. Their doctors were stumped. The Centers for Disease Control and Prevention, the nation’s presumed bulwark against emerging infectious diseases, dismissed the epidemic and said the Tahoe doctors “had worked themselves into a frenzy.” The sufferers, a C.D.C. investigator told me at the time, were “not normal Americans.”
When, by 1987, the supposed hysteria failed to evaporate and indeed continued erupting in other parts the country, the health agency orchestrated a jocular referendum by mail among a handful of academics to come up with a name for it. The group settled on “chronic fatigue syndrome” — the use of “syndrome” rather than “disease” suggested a psychiatric rather than physical origin and would thus discourage public panic and prevent insurers from having to make “chronic disbursements,” as one of the academics joked.
An 11th-hour plea by a nascent patient organization to call the disease by the scientific name used in Britain, myalgic encephalomyelitis, was rejected by the C.D.C. as “overly complicated and too confusing for many nonmedical persons.”
Had the agency done nothing in response to this epidemic, patients would now be better off. The name functioned as a kind of social punishment. Patients were branded malingerers by families, friends, journalists and insurance companies, and were denied medical care. (It’s no coincidence that suicide is among the three leading causes of death among sufferers.) Soon the malady came to be widely considered a personality disorder or something that sufferers brought upon themselves. A recent study financed by the C.D.C. suggested that childhood trauma or sexual abuse, combined with a genetic inability to handle stress, is a key risk factor for chronic fatigue syndrome.
Many people don’t realize how severe this illness can be. It is marked by memory and cognition problems, and physical collapse after any mental or physical exertion. The various co-infections that occur only make matters worse. Many patients are bedridden. And recovery is rare. A significant number of patients have been ill for more than two decades.Dr. Nancy Klimas, an immunologist at the University of Miami School of Medicine who treats AIDS and chronic fatigue syndrome, remarked in The Times last week that if given the choice she would prefer to have AIDS: “My H.I.V. patients for the most part are hale and hearty,” she said, noting that billions of dollars have been spent on AIDS research. “Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.”
Congress has appropriated money for research on chronic fatigue syndrome, too, though in far smaller amounts, but the C.D.C. has seemed unwilling to spend it productively. A decade ago, investigations by the inspector general for the Department of Health and Human Services and what was then called the General Accounting Office revealed that for years government scientists had been funneling millions meant for research on this disease into other pet projects.
As public health officials focused on psychiatric explanations, the virus apparently spread widely. In the new study, active XMRV infections were found in 3.7 percent of the healthy controls tested. Roughly the same degree of infection in healthy people has been found in the prostate research. If this is representative of the United States as a whole, then as many as 10 million Americans may carry the retrovirus.
It is estimated that more than a million Americans are seriously ill with the disease. (Not everyone infected with XMRV will necessarily get chronic fatigue syndrome — in the same way that not all of the 1.1 million Americans infected with H.I.V. will get AIDS.)
Hints that a retroviral infection might play a role in chronic fatigue syndrome have been present from the beginning. In 1991, Dr. Elaine DeFreitas, a virologist at the Wistar Institute in Philadelphia, found retroviral DNA in 80 percent of 30 chronic fatigue patients. The C.D.C. went so far as to try to replicate her effort, but refused to follow her exacting methods for finding the virus. In addition, the centers’ blood samples became contaminated, and some people at the agency said that administrators ended the research prematurely. Rather than admit any such failure, the C.D.C. publicly criticized Dr. DeFreitas’s findings.
That episode had a chilling effect on other researchers in the field, and the search for the cause was largely abandoned for 20 years.
Now, Judy Mikovits, the retrovirus expert at the Whittemore Peterson Institute, in Reno, Nev., who led the recent study, has revisited the cold case. Not surprisingly, the institute is private, created by the parents of a woman who suffers from chronic fatigue syndrome. But Dr. Mikovits collaborated with scientists at the National Cancer Institute and the Cleveland Clinic.
When she began her work on this disease in 2006, Dr. Mikovits, a 22-year veteran of the National Cancer Institute, knew little about chronic fatigue syndrome. But she was intrigued that an unusually high number of patients being followed by a Nevada doctor were suffering rare lymphomas and leukemias; at least one had died. And she was also impressed that the doctor, Dan Peterson, had built an extraordinary repository of more than 8,000 chronic fatigue syndrome tissue samples going back as far as 1984.
“My hypothesis was, ‘This is a retrovirus,’ and I was going to use that repository to find it,” Dr. Mikovits told me.
What she found was live, or replicating, XMRV in both frozen and fresh blood and plasma, as well as saliva. She has found the virus in samples going back to 1984 and in nearly all the patients who developed cancer. She expects the positivity rate will be close to 100 percent in the disease.
“It’s amazing to me that anyone could look at these patients and not see that this is an infectious disease that has ruined lives,” Dr. Mikovits said. She has also given the disease a properly scientific new name: X-associated neuroimmune disease.
For patients who have been abandoned to quackish theories and harsh ideologies about their illness for 25 years, the dismantling of “chronic fatigue syndrome” can’t come soon enough.
Hillary Johnson is the author of “Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic.”
