tag:blogger.com,1999:blog-10786851162969218182024-03-13T10:11:52.677-04:00CFS CentralBeyond-the-headlines reporting on <br>Myalgic Encephalomyelitis/Chronic Fatigue SyndromeMindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.comBlogger125125tag:blogger.com,1999:blog-1078685116296921818.post-12180898783195274822015-02-10T11:03:00.001-05:002015-02-10T15:54:16.943-05:00IOM Report: Remarkably Positive for ME patients
The IOM report is in, and it’s remarkably positive for ME patients. The IOM committee has
proposed a new name for ME: Systemic Exertion Intolerance Disease or SEID. OK,
it’s a mouthful, and how do you pronounce the acronym? It’s possible that disbelievers will morph the
name into: You’re Just Too Lazy to
Exercise. Which no one would do had there not been the idiotic Chronic Fatigue
Mindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.com7tag:blogger.com,1999:blog-1078685116296921818.post-35829293403838400472015-02-10T10:54:00.001-05:002015-02-10T10:54:34.958-05:00Mindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.com0tag:blogger.com,1999:blog-1078685116296921818.post-83884475562991992252014-07-07T19:16:00.002-04:002022-10-21T23:42:37.165-04:00CDC AND PEM
CDC's head of CFS research Dr. Beth Unger said at last month's Chronic Fatigue Syndrome Advisory Committee meeting that she couldn't figure out how to measure post-exertional malaise (PEM)--the hallmark of ME--and thus believes problems would ensue if PEM is a mandatory symptom.
"My concern about making post-exertional malaise an absolute criteria for diagnosis is if you don't have a Mindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.com6tag:blogger.com,1999:blog-1078685116296921818.post-56977462646924214992014-05-11T11:52:00.000-04:002014-06-11T19:39:56.353-04:00Candid Conversation with Dr. Ian Lipkin
Ian
Lipkin, professor of epidemiology and neurology at Columbia, recognized for his work on SARS
and West Nile virus, science consultant to the film Contagion, has been at work on what he admits may be his toughest
project to date: research into ME. From the Chronic Fatigue Initiative, Lipkin received funding, and his work so far has shown cytokine activation in the disease. Mindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.com49tag:blogger.com,1999:blog-1078685116296921818.post-6068119718753429172014-05-10T14:50:00.001-04:002014-05-10T14:50:35.255-04:00Interview with Dr. Ian Lipkin
I had a candid conversation with Dr. Ian Lipkin this week in which he discussed his ME research, the government’s thinking when it comes to ME and how to get
more research funding dollars from the government. I'm working on a story, which will be published here soon.
Mindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.com0tag:blogger.com,1999:blog-1078685116296921818.post-25579239060194105992014-01-28T10:43:00.000-05:002014-02-01T11:05:53.464-05:00IOM Testimony
Below is my testimony from yesterday's conference at the Institute of Medicine. To watch it, click here.
My name is Mindy Kitei, and I’m
a journalist. I’ve been reporting on
myalgic encephalomyelitis for more than twenty years and started my blog, CFS
Central, in honor of my friend Nancy Kaiser, who died of the disease in 2008.
Fifty of the finest ME experts
believe that the Mindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.com15tag:blogger.com,1999:blog-1078685116296921818.post-21001620368508697842014-01-17T03:08:00.000-05:002014-01-17T03:08:20.698-05:00HealClick
Thirty-year-old Joey Tuan can pinpoint
the exact moment he got sick in 2005. It
was mile three of a 17-mile hike at Half Dome in Yosemite. Before he reached
that pivotal instant that would change his life, he says he was in the best
shape of his life—and having the time of his life. “I was an adrenalin junkie,
a classic type A pusher, working 60 hour weeks as a dispute investigations Mindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.com0tag:blogger.com,1999:blog-1078685116296921818.post-21197308106125185752013-10-31T18:25:00.000-04:002013-10-31T18:25:01.375-04:00CFSAC Nomination: Jeannette Burmeister
Wouldn't it be great to have patient advocate Jeannette Burmeister on the Chronic Fatigue Syndrome Advisory Committee? On her blog, she's been a fierce advocate and takes no prisoners when it comes to the government's mishandling of ME. She's been nominated already by patient advocates John Herd and Eileen Holderman. Holderman fought the good fight on CFSAC; her tenure expires in Mindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.com2tag:blogger.com,1999:blog-1078685116296921818.post-89058075278437918602013-10-22T15:40:00.000-04:002013-10-22T15:40:19.453-04:00New ME Film: Canary in a Coal Mine
Jennifer Brea and Kiran Chitanvis have just launched their Kickstarter campaign to raise $50,000 to make Canary in a Coal Mine, their documentary about ME. Brea, a journalist, came down with ME three years ago. An interview with Brea will follow shortly on this blog. You can share their campaign with others and view two terrific clips from their film here. When you click to get to Mindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.com0tag:blogger.com,1999:blog-1078685116296921818.post-16282914049561595702013-09-24T15:09:00.002-04:002022-10-21T23:49:06.446-04:00CDC's Two-Day Exercise Test: Not Negotiable
Center for Disease Control's head of CFS research Dr. Beth Unger is slated to do a
problematic one-day ME exercise study called the Cardiopulmonary-Exercise Testing, instead of the two-day test favored by
most patients and ME-educated researchers. What’s wrong with Unger's
study?
The problem is that studies show that defects in ME patients' exercise capacity aren't evident until Mindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.com7tag:blogger.com,1999:blog-1078685116296921818.post-46600008514314627822013-07-07T19:26:00.000-04:002013-07-08T10:58:16.653-04:00Interview with Ryan Prior and Nicole Castillo of The Blue Ribbon
Journalist Ryan
Prior and filmmaker Nicole Castillo didn’t have an aha moment that prompted
them to make the documentary, The Blue
Ribbon, about ME. Their interest, which marinated over a period of months, began when Prior, who’s had ME since October
2006, wrote his first piece on the subject for the USA Today College blog in
October 2012, “two weeks after Ian Lipkin’s nail-in-the-coffin Mindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.com7tag:blogger.com,1999:blog-1078685116296921818.post-43910106155229352732013-06-06T17:43:00.001-04:002013-06-06T17:47:08.358-04:00Ampligen Up for Approval--in Argentina
Hemispherx, the company that makes the experimental ME drug Ampligen, applied for approval in Argentina in July of 2012. ANMAT (Administracion Nacional de Medicamentos, Alimentos y Tecnologia Medica), Argentina’s version of the FDA, generally renders decisions in one year. The company already received approval for a form of interferon called Alferon in Latin American countries (it's Mindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.com3tag:blogger.com,1999:blog-1078685116296921818.post-17929760471937159532013-04-24T16:22:00.000-04:002013-04-24T16:22:49.615-04:00GONE TO THE FDA
I'm going to the FDA tomorrow and Friday. If Internet connections and my Kindle cooperate, I'll try to post on Twitter in real or semi-real time. If not, I'll post when I return.
Mindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.com3tag:blogger.com,1999:blog-1078685116296921818.post-7726523912609957602013-02-04T19:50:00.000-05:002013-02-04T19:51:00.120-05:00Ampligen: It's a NO
From the GlobeNewswire:
Hemispherx Biopharma, Inc.(NYSE MKT:HEB) (the "Company" or "Hemispherx"), announced that it received a Complete Response Letter from the US Food and Drug Administration ("FDA") declining to approve its new drug application ("NDA") for Ampligen® for Chronic Fatigue Syndrome ("CFS"). The FDA said Hemispherx should conduct at least one additional clinical trial, Mindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.com1tag:blogger.com,1999:blog-1078685116296921818.post-63659834805488275652013-02-03T18:23:00.000-05:002013-02-03T18:23:54.877-05:00Hamlet Without Hamlet
Patient advocate Bob Miller, who's on the experimental drug Ampligen, has been urging FDA to approve the medication for ME by going on a hunger strike. He's been fasting since January 29th: six days. Healthy people fasting for six days would be weak. But someone with ME?
Last month another patient advocate suggested to me that ME patients or their loved ones go on such a strike. &Mindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.com2tag:blogger.com,1999:blog-1078685116296921818.post-83156926253083656562013-02-01T16:49:00.000-05:002013-02-01T17:30:28.962-05:00BOB MILLER'S HUNGER STRIKE
Advocate Bob Miller has been on a hunger strike to try to convince FDA to approve the experimental drug Ampligen for ME. He and fellow patient Dr. Janet Smith got a terrific piece of local news coverage in Reno, Nevada. FDA is scheduled to make a decision on Ampligen's fate by tomorrow. Given that the FDA committee voted no to Ampligen on December 20, odds are slim that the FDA willMindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.com2tag:blogger.com,1999:blog-1078685116296921818.post-44012092930287960812013-01-10T05:19:00.000-05:002013-01-10T12:37:07.756-05:00FDA'S DOUBLE STANDARD
A mad-as-hell Sid Wolfe of the watchdog group Public Citizen sued FDA about the agency's refusal to ban the highest dose of the Pfizer Alzheimer's drug Aricept--and lost. Studies don't show increased efficacy of the 23-milligram pill compared with the lower doses of 5 and 10 milligrams. However, the higher dose does show increased toxicity, including, Wolfe said, increased mortality.
Mindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.com9tag:blogger.com,1999:blog-1078685116296921818.post-26831897234225749612012-12-26T14:15:00.002-05:002023-12-04T13:41:23.390-05:00An Inappropriate Script
For me, the most problematic thing about the FDA Ampligen committee meeting wasn't Ampligen's nonapproval. It was a sick ME patient leaning on a cane who showed me the prescription a neurologist had given her—after admonishing her for using a cane. Gazing at the script for several seconds, I first felt confusion and then the patient's humiliation. The prescription read:
TaiMindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.com9tag:blogger.com,1999:blog-1078685116296921818.post-35051541142320473492012-12-22T02:34:00.002-05:002021-09-19T12:26:02.478-04:00The Oxford Definition It's Baaack
I asked CDC's Unger via email why is CDC using the antiquated
Oxford* definition in its partnership with HRSA (Health Resources and Services
Administration), along with Fukuda** and Canadian Consensus Criteria*** in its continuing education courses? The Oxford definition
requires only fatigue, unlike the other definitions of ME, which require
immune, neurologic and autonomic symptoms.
I also Mindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.com18tag:blogger.com,1999:blog-1078685116296921818.post-19821352314230437012012-10-27T21:50:00.000-04:002012-11-01T05:03:55.002-04:00CDC Toolkit: Despite Its Inaccuracies, CDC Won't Remove It
Last spring, members of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) ruled that they wanted the CDC Toolkit about "CFS" removed from the CDC website because it’s inaccurate and because it’s giving false information to millions of doctors about ME. For instance, the Toolkit endorses Cognitive Behavioral Therapy and Graduated Exercise Therapy (GET), which have been shown not onlyMindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.com13tag:blogger.com,1999:blog-1078685116296921818.post-47627702196725114882012-09-25T13:59:00.000-04:002012-09-29T18:13:31.043-04:00TELL THE FDA: What Have Your Experiences Been on Ampligen?
The Food and Drug Administration (FDA) will once again
decide this winter whether the experimental drug Ampligen, which has helped
many ME patients recover or improve, should be approved. Should the drug be approved, it will be
an ME game-changer.
Oddly, little has been discussed on the boards about
Ampligen this time around—perhaps because the drug’s been up for approval
Mindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.com20tag:blogger.com,1999:blog-1078685116296921818.post-11198333488742218202012-09-04T13:36:00.000-04:002012-09-05T11:21:27.331-04:00Team Science
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font-size:Mindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.com5tag:blogger.com,1999:blog-1078685116296921818.post-78408860611466462312012-08-23T01:19:00.001-04:002012-08-24T12:06:19.622-04:00The Blood Became Sick
A disease discovered about eight years ago is spreading in Asia and parts of the United States. Its victims, most of whom are Asian, are HIV-negative. Their immune systems are paralyzed due to the body churning out autoantibodies that inhibit gamma interferon, which fights infections. For more: click here.
Mindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.com6tag:blogger.com,1999:blog-1078685116296921818.post-61781819729721158782012-08-15T21:59:00.000-04:002012-08-16T10:39:10.826-04:00The Secret Files
Slogging through the sealed U.K. ME files that have finally been released isn't exactly like combing through Girl with the Dragon Tattoo material. But a few of the many entries--most of which concern disability eligibility--may prove illuminating, despite the
fact that the patronizing author of what may be the most problematic entry is unknown: The
beginning of the letter and signature are Mindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.com7tag:blogger.com,1999:blog-1078685116296921818.post-83388180723154619872012-05-17T18:02:00.001-04:002012-05-19T13:29:38.640-04:00PLAY IT AGAIN, AND AGAIN AND AGAIN
A New ME Outbreak?
A group of mostly female students aged 12 to 19 in San
Antonio, Texas, have come down with a constellation of symptoms physicians are
terming unusual. Those symptoms
include chronic fatigue, headaches, nausea, vertigo, stomach problems and
seizure-like activity. In a recent news segment by San Antonio reporter Sarah
Lucero, a mother of one of the girls said that oneMindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.com19