tag:blogger.com,1999:blog-56134489524983381082012-01-28T03:21:24.724-08:00The newest research about living with Chronic Fatigue Syndrome (CFS)/XMRV/HGRAD/fibromyalgia, with personal observations (the most pertinent parts of long articles will be highlighted for the reader)CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.comBlogger29681100tag:blogger.com,1999:blog-5613448952498338108.post-54456315244913909972012-01-28T03:21:00.001-08:002012-01-28T03:21:24.798-08:00

*Please repost*I'm so excited, the 'Tinkerbell and Hummingbird M.E. Blog' is now live!This blog is the brainchild of severe M.E. patient Alison Bell (from theUK), and she kindly invited me along for the ride. The blog aims to talkabout all sorts of issues surrounding M.E. and how it affects our livesand what living with M.E. is like - rather than just giving the medicaland political facts

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-65572827299188709282012-01-27T20:13:00.001-08:002012-01-27T20:13:36.519-08:00

Fibromyalgia: What to Eat, What Not to Eat - Fibromyalgia Center - Everyday Health

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-63715974832013884732012-01-26T07:57:00.001-08:002012-01-26T07:57:41.888-08:00

Bunmi Sobowale, British Woman, Blinded, Paralyzed By Food Intolerance   To anyone who thinks those of us with food allergies should just suck it up and eat what everyone else is eating, don't be so overdramatic -- here's why I INSIST on knowing what's in that casserole before I dig in!    

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-12959766602885588462012-01-26T05:55:00.001-08:002012-01-26T05:55:26.569-08:00

How to Help Your Doctor Understand ME/CFS Disability  

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-61648712391147145192012-01-25T13:33:00.001-08:002012-01-25T13:33:40.685-08:00

Get Well From ME » 7. What To Do When Your Friend Has An Invisible Illness   "People with ME are usually the most conscientious and highly motivated people I've ever met. We honestly, desperately want to do stuff. It's not like when your back is turned, we stop "pretending to be ill" and just get on with fun things and enjoy an easy life! No, it's the complete opposite. When you

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-87806079162375993702012-01-25T13:21:00.001-08:002012-01-25T13:21:39.281-08:00

X Rx Blog - X Rx   Dr. Jamie has changed blog hosting for her blog, so click here to get to it.

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-10104185988287001772012-01-23T04:13:00.001-08:002012-01-23T04:13:29.211-08:00

The Kafka Pandemic: Three things people don't know   "If you cannot explain the facts of late-stage disease, then you cannot explain the disease.  If your explanation does not fit the facts, then it fails"   Good points!  One of my doctors, after I presented him all the symptoms that proved it wasn't depression, told me "nothing you said made sense".  Of course not.  He was trying to

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-71801734131330283942012-01-18T08:04:00.001-08:002012-01-18T08:04:46.409-08:00

Why you can't sleep when you're in pain – - CNN.com Blogs

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-77471711734944680302012-01-16T12:20:00.001-08:002012-01-16T12:20:52.083-08:00

It's only ME, it's not my mind.: Seven Blind Men, an Elephant and a Weasel

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com1tag:blogger.com,1999:blog-5613448952498338108.post-10490398254780148602012-01-15T04:43:00.001-08:002012-01-15T04:43:35.910-08:00

The creative struggle of Brian Wilson - CNN.com     "For creativity is not just defined by untethered, high-flying talent that flashes like lightning then fades into the darkness. It requires sustainability. It includes, to overlapping degrees, risk taking, genre-mixing skill, an aptitude for improvising and -- above all -- passion. Experts make a distinction between everyday creativity

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-33439319675532673122012-01-15T03:07:00.001-08:002012-01-15T03:07:30.688-08:00

The minutes of the November 8-9, 2011 (US) CFS Advisory Committee(CFSAC) meeting are now available:November 8, 2011 (PDF):http://1.usa.gov/yrAQMe  i.e.http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac_min-11082011.pdfNovember 9, 2011 (PDF):http://1.usa.gov/xZdUwS  i.e.http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac_min-11092011.pdf

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-58600895061205224792012-01-14T17:55:00.001-08:002012-01-14T17:55:42.331-08:00

The Sleeping Sickness • Damn Interesting   Beginning as early as 1916, and continuing well into the 1920s, an unusual and disturbing illness devastated millions of people throughout the world. It arrived in the shadow of the 1918 Spanish Flu epidemic– which killed an estimated fifty million people worldwide– so it has been largely overlooked by history despite the fact that it took the

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com1tag:blogger.com,1999:blog-5613448952498338108.post-59652082644784260872012-01-14T17:45:00.000-08:002012-01-14T17:46:01.026-08:00

Awakenings - based on a true story [Archive] - NeuroTalk Support Groups   We realised we must be onto something Dr Andrew Church The first clue was that many of the patients had had a sore throat before they were struck down with the illness. So the two doctors started looking for evidence of bacterial infection - and particularly streptococcus bacteria which is a common cause of sore

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-5735092439518779502012-01-14T15:52:00.001-08:002012-01-14T15:52:55.669-08:00

  Awakenings (1990) - IMDb   "The victims of an encephalitis epidemic many years ago have been catatonic ever since, but now a new drug offers the prospect of reviving them." Several people have commented on the similarities to Myalgic Encephalomyelitis.  Watching it on TV now.      

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-88106476704201722352012-01-13T08:41:00.001-08:002012-01-13T08:41:51.420-08:00

A Tale of Two Viruses: Why AIDS Was Pinned to HIV, but Chronic Fatigue Remains a Mystery   http://blogs.discovermagazine.com/crux/2012/01/12/hiv-in-xmrv-out-how-scientists-deduce-what-does-and-doesnt-cause-a-disease/

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-83190483531755308182012-01-10T15:01:00.001-08:002012-01-10T15:01:15.864-08:00

PERMISSION TO FORWARD AND RE-POST ON OTHER FORUMS, SOCIAL NETWORKINGSITES AND USE IN NEWSLETTERS. PLEASE TWEET AND RE-TWEET ON TWITTER.For anyone who cannot see my comment on Ange's Blog (to which I urge asmany as can manage to contribute):[I hope that Ange and readers, here, will appreciate that my post is notwith any negative hostility to her conclusions but as a reaction to thepoints

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-60141493182922579142012-01-09T16:03:00.001-08:002012-01-09T16:03:42.856-08:00

http://www.health.com/health/gallery/0,,20436269,00.html?hpt=hp_bn12

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-45030296536489817072012-01-09T09:27:00.001-08:002012-01-09T09:27:26.624-08:00

How to take America back from 'Greedy Bastards' - books - TODAY.com    Although he could move in with his sister, he doesn't want to be a burden, and he knows that she can't afford to pay for his health care out of pocket any better than he can. So what choices does he have? He goes into the local bank and slips the teller a note. It demands $1—and health care. This is not a fantasy, and

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6 Ways to Look and Feel Better With Fibromyalgia - Fibromyalgia Center - Everyday Health

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-17790229391705408922012-01-06T04:39:00.001-08:002012-01-06T04:39:11.700-08:00

Please note that Suzy Chapman's blog, DSM-5 watch, has moved to http://dxrevisionwatch.wordpress.com/ . The reasons are Orwellian, Suzy says here http://www.psychologytoday.com/blog/dsm5-in-distress/201201/is-dsm-5-public-trust-or-apa-cash-cow"Until last week, my website published under the domain namehttp://dsm5watch.wordpress.com/ .On December 22, I was stunned to receive two emails from

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-18251823833683321002012-01-05T22:54:00.001-08:002012-01-05T22:54:41.587-08:00

Let Them Die Because It's About Money, Not Lives   Nearly 45,000 people die in the United States each year — one every 12 minutes — in large part because they lack health insurance and can not get good care, Harvard Medical School researchers found in an analysis released on Thursday. "We're losing more Americans every day because of inaction … than drunk driving and homicide

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-43192876636516377832012-01-04T11:28:00.001-08:002012-01-04T11:28:06.735-08:00

In Defense of Facebook | Psychology Today   a port in a storm for the chronically ill   Come join us at: Facebook | CFS Facts

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-88436184635329182382012-01-03T11:05:00.001-08:002012-01-03T11:05:02.799-08:00

Pregnancy and nutrition - The Hummingbirds' Foundation for M.E.   To the best of my knowledge, no actual research studies have been done on the effects of pregnancy on CFS (or vice versa).  Anecdotal evidence goes both ways -- my doctor told me to avoid it because some patients become permanently bedridden from the stress on their already-fragile bodies, other patients have reported

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-37181182628300759822012-01-03T08:19:00.001-08:002012-01-03T08:19:27.377-08:00

ME, CFS, ME/CFS or not? Argument by Tom Hennessy | The Health Matters Show With Cinda Crawford   "I believe that these are cases of Multiple CHRONIC IMMUNOLOGICAL AND NEUROLOGICAL DISEASES aka CIND. that is where the name RESCIND, INC. comes from, some 20 years ago."

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-87365955736038908312012-01-03T07:33:00.001-08:002012-01-03T07:33:26.241-08:00

Coping With HIV Medicine Side Effects - HIV Center - EverydayHealth.com   "as many as 1 in 10 people with HIV will experience serious side effects from an HIV medicine."   As more ME/CFS patients are being prescribed anti-retrovirals, it's important to know how they may affect you.  For just two examples:   "Liver failure. This is most likely with the HIV medicine nevirapine, though other

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-61279981204087905292012-01-03T05:32:00.001-08:002012-01-03T05:32:17.323-08:00

Stem Cell Scheme: FBI Arrests Three Men Allegedly Peddling Miracle Cure To Terminal Diseases   Wonder when they're going to crackdown on all the people peddling miracle cures to desperate CFS patients?    One doctor I was pointed to by someone who was trying to help, had on his website that his cure rate was less than 20%, and when I called the office to inquire whether I could even take

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-17282566355381150492012-01-02T22:47:00.001-08:002012-01-02T22:47:37.031-08:00

CommonKindness - Welcome!   Save money and help others -- check website for coupons

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-79758227627950145132012-01-02T22:43:00.001-08:002012-01-02T22:43:35.487-08:00

Sparked.com Microvolunteering. Skilled Online Volunteering.   If you are stagnating at home and can spare a few minutes or an hour of energy now and again, check these offsite volunteering opportunities.  Stuff -- like writing and brainstorming -- that you can do from bed.

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com1tag:blogger.com,1999:blog-5613448952498338108.post-64583910376725535382012-01-02T18:44:00.001-08:002012-01-02T18:44:11.770-08:00

 Into 2012 without Cure or Care http://open.salon.com/blog/llewellyn_king/2012/01/02/mecfs_into_2012_without_cure_or_careJANUARY 2, 2012 2:18PMME/CFS: Into 2012 without Cure or CareBy Llewellyn KingIt's an indecent disease, shrouded in mystery, endless in suffering,in stigma and in despair. It's a life sentence and many of those whoare afflicted take their own lives, according to patient

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-21158715329271657592012-01-02T08:31:00.001-08:002012-01-02T08:31:11.891-08:00

CFIDS as a Disease "for women" by Mary Schweitzer   "The point is not so much that it really is "female" (it isn't) --but that it is perceived as "female things" are perceived, or have been perceived, in our culture. That is, Not Important, not serious, not worthy of respect by busy doctors who have important and serious matters to deal with every day."    

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-75288851144580471122012-01-02T03:11:00.001-08:002012-01-02T03:11:15.667-08:00

If A Scientific Finding Was Retracted, They Know it Must Be True « The Reality-Based Community   Christopher Wanjeck lists the five biggest retractions of science in 2011. Some were honest errors, others were likely fraud. Here are the inaccurate findings that were later retracted: (a) Closing medical marijuana dispensaries increases crime(b) Butterflies once accidentally mated

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-18550890098843085302011-12-31T08:41:00.001-08:002011-12-31T08:41:32.639-08:00

Corporate Control of People with Disabilities | #Occupy at Home    When I first became disabled, I had multiple chemical sensitivity (MCS) and myaglic encephalitis/chronic fatigue immune dysfunction syndrome (ME/CFIDS).   * * * Good article for those who think that we just get handed government assistance by asking for it.  Describes the hoops you have to jump through to get anything at

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-35574649429984705672011-12-31T04:53:00.001-08:002011-12-31T04:53:41.319-08:00

"When I was a student at Cambridge I remember an anthropology professor holding up a picture of a bone with 28 incisions carved in it. "This is often considered to be man's first attempt at a calendar" she explained. She paused as we dutifully wrote this down. 'My question to you is this – what man needs to mark 28 days? I would suggest to you that this is woman's first attempt at a

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-81708281172764347992011-12-30T10:57:00.001-08:002011-12-30T10:57:56.014-08:00

How Doctors Die - Not Like The Rest Of UsIt's not a frequent topic of discussion, but doctors die, too. And they don't die like the rest of us. What's unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-135582533636444682011-12-30T07:15:00.000-08:002011-12-30T07:16:01.722-08:00

The Price Tag on Teaching Compassion = $42 Million   Based on a horrible experience Carolyn Bucksbaum had many years ago when her doctor dismissed her intuition about her medical condition, and a second and ongoing experience over the next many years when she worked with Dr. Mark Siegler at the University of Chicago Medical Center, Mrs. Bucksbaum decided to do something to be sure other

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-76600594093632500182011-12-30T05:03:00.001-08:002011-12-30T05:03:56.287-08:00

Solving my medical mystery - CNN.com   "Now, like someone who's made a bad choice in spouses on the first go-round, I am exceedingly careful about whose hands I put myself in. I can't fix a medical system reliant on tests. But I can pick doctors who listen, ones who actually think -- and not just test -- their way to an explanation."    

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-64904896794550617822011-12-29T09:55:00.000-08:002011-12-29T09:56:08.014-08:00

Permission to Repost.Defending the indefensible?Margaret Williams 27th December 2011Professor Simon Wessely once again attempts to defend what has already been shown to be indefensible, namely his own beliefs about the nature of ME/CFS, including his belief that graded exercise therapy (GET) has "an impeccable safety record" (Simon Wessely; Health in mind and body; The Journal of the

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com1tag:blogger.com,1999:blog-5613448952498338108.post-7951536560052440052011-12-29T09:24:00.001-08:002011-12-29T09:24:50.775-08:00

Special Report: Phantom firms bleed millions from Medicare | Reuters   This is the REAL Medicare fraud -- not patients allegedly overtreating  Remember -- patients can't get treatment unless a doctor prescribes it, and patients are not the ones who submit the inflated bills, doctors' offices do that, too.   So stop blaming Medicare fraud on poor, disabled patients.  Go after the real

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-42000446721822272312011-12-28T17:36:00.001-08:002011-12-28T17:36:05.029-08:00

Judy Mikovits: Sue Vogan's Blog – Host of In Short Order Radio Show   For those of us who still believe in "innocent until proven guilty," a legal defense fund has been set up for Dr. Mikovits: Mikovits Legal Fund 2031 Jamestown Way, Oxnard, CA 93035 or donate online at https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=ZXBTCE4KMY3US and for questions or well wishes,

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-47960539897907054052011-12-26T20:04:00.001-08:002011-12-26T20:04:10.854-08:00

Compliation of articles on the MLV retraction-Second XMRV-CFS Paper Pulledhttp://www.medpagetoday.com/InfectiousDisease/GeneralInfectiousDisease/30372Another shoe drops as authors retract PNAS chronic fatigue syndrome-virus paperhttp://retractionwatch.wordpress.com/2011/12/26/another-shoe-drops-as-authors-retract-pnas-chronic-fatigue-syndrome-virus-paper/Authors retract paper on detection of

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-91832924630717680082011-12-26T18:38:00.001-08:002011-12-26T18:38:11.355-08:00

Paper Linking MLV Sequences to CFS Retracted   Lo-Alter paper retracted: The Lo-Alter team's findings have come under scrutiny as possibly due to contaminants associated with common laboratory reagents. Phylogenetic analysis conducted by Katzourakis et al. and other groups suggest the sequences identified by Lo et al. in samples from CFS patients collected 15 years apart were not

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-40498741738056404102011-12-25T12:31:00.001-08:002011-12-25T12:31:38.123-08:00

Not one bit of decoration in my house this year.  I made the considered decision a couple weeks ago that it was more important to "be normal" for a day and go to The Messiah that a friend was directing, rather than invest the energy in decorations that only I would see.  It was worth a couple days of exhaustion afterward to do something that I used to do and enjoy being out among people who

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-13792152440637508672011-12-25T02:06:00.001-08:002011-12-25T02:06:05.853-08:00

Pain Res Treat. 2012;2012:585419. Epub 2011 Oct 27.Neurobiology underlying fibromyalgia symptoms.Ceko M, Bushnell MC, Gracely RH.Alan Edwards Centre for Research on Pain, McGill University, 3640University Street, Room M19, Montreal, QC, H2A 1C1, Canada.AbstractFibromyalgia is characterized by chronic widespread pain, clinicalsymptoms that include cognitive and sleep disturbances, and

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-53847456583640151922011-12-25T01:56:00.001-08:002011-12-25T01:56:26.248-08:00

Note: The mind and body appear to interact in many diseases, howeversome assumptions are tricky.Misinterpretations of bodily symptoms as being depression or anxiety,especially in diseases (and psychiatric disorders) lacking diagnostictesting, may confound the results of studies and inflate estimates ofpsychiatric co-morbidities. There is also always the danger of mixingpeople without a

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-18839930152837092382011-12-25T01:52:00.001-08:002011-12-25T01:52:26.701-08:00

Note: As a patient, regardless of the disorder, if you are taking anymedications and or supplements for long stretches of time your doctorshould be monitoring your blood and organ function on a regular basis.If your doctor is not doing this and is not willing to do this then itmay be time to find another doctor if you have that option. Or you maywish to discuss other individualized

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-8756797818356751512011-12-24T07:32:00.001-08:002011-12-24T07:32:37.442-08:00

Laura Hillenbrand's Acclaimed Bestsellers Haven't Changed Her - The Daily Beast

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-6569822758464982942011-12-24T04:02:00.001-08:002011-12-24T04:02:26.365-08:00

  Michael Snyderman MD says:Quote:The retraction of Lombardi et al by Science is not the end of the story. Negative studies looking at only XMRV are not relevant. Because XMRV is gone, Dr. Coffin and other scientists cannot go beyond their data as they have done and say that HGRVs do not cause CFS and by extension other human disorders. I counsel these scientists to not exclude other

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-62610452073650565162011-12-23T10:04:00.001-08:002011-12-23T10:04:46.779-08:00

Irish doctor opens new chronic fatigue syndrome clinic in NYCClinic opens after $1 million donation from Doctor Enlander's patientsBy MOLLY MULDOON, IrishCentral Staff WriterPublished Friday, December 23, 2011, 8:13 AMUpdated Friday, December23, 2011, 8:13 AMAn Irish doctor has launched a specialized research clinic in New Yorkfor chronic fatigue syndrome (CFS) at the Mt. Sinai Hospital

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-39050022199750255502011-12-23T07:18:00.001-08:002011-12-23T07:18:17.175-08:00

Study: More Than 90% of Patients Say They Want to Read Doctors' Notes, but Most Doctors Resist | Healthland | TIME.com   Because they don't want you to see what they're REALLY writing about you.  Not one page of my medical records from a respected institution doesn't have at least one outright lie that makes me look bad.  A lifelong history of depression was invented so they wouldn't have

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-68936902175027223512011-12-22T13:43:00.001-08:002011-12-22T13:43:15.541-08:00

I've uploaded my testimony from the November meetings of CFSAC to my blog.  You'll find a copy here:http://slightlyalive.blogspot.com/2011/12/why-wont-cdc-study-my-disease.htmlMary Schweitzer

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Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document.   Implications for Rehabilitation Pacing is a strategy which helps patients with ME/CFS limit exertion-related increases in symptomatology. Pacing is appropriate for those who operating near or at their maximum level of functioning, and for

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-66267567519552978342011-12-21T18:43:00.001-08:002011-12-21T18:43:25.754-08:00

Disability-Benefits System Faces Review - WSJ.com   http://online.wsj.com/article/SB10001424052970204844504577098810070396878.html?fb_ref=wsj_share_FB&fb_source=home_multiline

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-45626484780264709332011-12-19T11:52:00.001-08:002011-12-19T11:52:31.202-08:00

Note: Confusion ensues sometimes when people confuse depression, whichis a psychiatric disorder, with a symptom of a disease. Disorders canbe concurrent with any disease, but they are not a symptom. A symptomis any morbid phenomenon or departure from the normal in structure,function, or sensation, experienced by the patient and indicative ofdisease. Depression for example, can be

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com1tag:blogger.com,1999:blog-5613448952498338108.post-55485602939183863912011-12-19T10:57:00.001-08:002011-12-19T10:57:38.976-08:00

  M.I.T. Expands Its Free Online Courses www.nytimes.com The new online learning platform will provide access to online laboratories, self-assessments and student-to-student discussions.    

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-39313727306360621562011-12-18T03:08:00.001-08:002011-12-18T03:08:15.665-08:00

"Given the success rate of the "stop a benefit fraud" hotline is only 0.31%, a large number of people are being maliciously accused of benefit fraud. Such malicious people should be subject the criminal law similar to wasting police time."   Several years ago, the State of Connecticut launched a million-dollar disability fraud investigation and found only six people in the entire state who

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-35061991611906273402011-12-18T01:38:00.000-08:002011-12-18T01:39:01.173-08:00

http://www.rgj.com/article/20111217/NEWS/112180351/Whittemore-Peterson-Institute-vows-get-past-setbacks?odyssey=tab%7Ctopnews%7Ctext%7CLocal%20NewsWhittemore Peterson Institute vows to get past setbacksWritten by Lenita Powers9:01 PM, Dec. 17, 2011The Whittemore Peterson Institute for Neuro-Immune Disease in Renomade headlines around the world in 2009 when news spread that itsresearchers had

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MS Exercise - Multiple Sclerosis Center - EverydayHealth.com   "Listen to your body and learn how it reacts to changes in your routine and lifestyle"   "it is best to learn relaxation and energy conservation to avoid flare-ups." Keep a record of the exercises you do and how your body responds to them."   "The society recommends yoga and tai chi as two forms of physical activity that focus

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 6.  Vitamin D is better than any vaccine says DoctorGermans found that Vitamin D increases the immune system by 3-5 times and is better than any vaccine at helping the immune system beat the h5n1 (bird flu) virus. Watch the video. The Canadian is a socially progressive and not-for-profit national newspaper, with an international readership. We provide an alternative to the for-profit

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PERMISSION TO FORWARD AND RE-POST ON OTHER FORUMS, SOCIAL NETWORKING SITES AND USE IN NEWSLETTERS. PLEASE TWEET AND RE-TWEET ON TWITTER.Whitehaven News Letters.Following the publication of a letter about M.E. in the Whitehaven News (8 December 2011), we have received a very kind offer of help, from a reader, Joyce, to visit or shop for an M.E sufferer in the locality. Since Joyce is herself

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-60323747269510084702011-12-15T16:01:00.001-08:002011-12-15T16:01:55.216-08:00

Floyd Skloot writes about the 1988 onset of CFS in this essay, "Gray Area," reprinted in LOST magazine from his collection, "In the Shadow of Memory." LOST will soon cease publication but is paying tribute to the 10 most accessed pieces, including our friend Floyd's. _http://www.lostmag.com/issue42/grayarea.php_ (http://www.lostmag.com/issue42/grayarea.php) Gray Area: Thinking

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A Conversation with Dr. Ian Lipkin | Chronic Fatigue Syndrome: A Novel   "Drs. Judy Mikovits and Frank Ruscetti continue to be part of the Lipkin study. ... He instead has worked with Mikovits and Ruscetti to find a lab where they would be `comfortable' working, he said. That lab has been found and their work has resumed, he said."   * * * Best Christmas gift?  :)    

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10 Things NOT to Say to a Person with Migraines - Migraine

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PERMISSION TO FORWARD AND RE-POST ON OTHER FORUMS, SOCIAL NETWORKINGSITES AND USE IN NEWSLETTERS. PLEASE TWEET AND RE-TWEET ON TWITTER.It is often said that the illness M.E. (Myalgic Encephalomyelitis) is"also known as" Chronic Fatigue Syndrome" (CFS). Further, that CFS ispreferred by doctors, while patients would rather have M.E, because theybelieve it implies a more serious illness,

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com1tag:blogger.com,1999:blog-5613448952498338108.post-69636592817830880332011-12-13T06:42:00.001-08:002011-12-13T06:42:22.758-08:00

Death probe for Multiple Sclerosis pillOne year after Novartis won FDA approval for a new type of drug to treat relapsing forms of multiple sclerosis and delay the progression of physical disabilities, the drugmaker is now investigating a death tied to its pill, which is called Gilenya. The disclosure, which was made by a Wall Street analyst, has the potential to cast a pall over a drug

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-848246505209347532011-12-13T06:26:00.000-08:002011-12-13T06:27:10.417-08:00

PERMISSION TO FORWARD AND RE-POST ON OTHER FORUMS, SOCIAL NETWORKING SITES AND USE IN NEWSLETTERS. PLEASE RE-TWEET ON TWITTER.The continued assertion of a relatively small but very influential school of researchers, practitioners and government advisers, including Dr Esther Crawley (BBC Radio 4, "Today" programme, 13 December 2011) that M.E. (Myalgic Encephalomyelitis) and CFS (Chronic

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-68803050479308068952011-12-12T12:56:00.001-08:002011-12-12T12:56:42.395-08:00

http://www.dailyfinance.com/2011/12/12/what-insurers-could-do-with-your-social-media-score/   Online data has also been used to dispute claims. There are numerous cases reported where someone has claimed to be disabled (a back injury suffered on the job, for example), but a social media posting contains pictures of them dancing or engaging in other strenuous, recreational activity," says

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-11575519954664832192011-12-11T20:01:00.001-08:002011-12-11T20:01:32.492-08:00

Chimp Speaks, Part I | No Poster Girl   "Diseases have their stories, of course.  They only have two, though, and both are written by those who do not have them.  In the first story, our heroine contracts The Disease, but The Disease never has a chance because our heroine is full of spunk or gumption or has an old soul (every folk tale has its regional variations) that The Disease cannot

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-35524174779307456862011-12-08T19:55:00.001-08:002011-12-08T19:55:36.627-08:00

MS May Take a Different Pathway Than Previously Thought - Multiple Sclerosis Center - EverydayHealth.com   Since there are similarities between MS and CFS....

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-44686190794481101832011-12-07T12:33:00.001-08:002011-12-07T12:33:36.761-08:00

Woman Who Attacked ObamaCare Apologizes After Breast Cancer Diagnosis   "while she was angered by Obama's plan, she's suddenly come to appreciate it, now that she's benefitting from it personally. "Two years ago, Spike Dolomite Ward and her husband had to choose between paying their mortgage or keeping their health insurance. They kept the house, and now at 49 Ward has been diagnosed with

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-39541679845226927102011-12-05T08:17:00.001-08:002011-12-05T08:17:50.419-08:00

A Smorgasbord of Interesting Disability Cases: Abuse of Discretion / Objective Evidence of Disability | Barger & Wolen - JDSup

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Celebrities With Autoimmune Diseases    

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-41835034075400762942011-12-03T07:09:00.001-08:002011-12-03T07:09:51.813-08:00

Presidential Proclamation - International Day of Persons with Disabilities | The White House

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-24607087293301688942011-12-03T06:05:00.001-08:002011-12-03T06:05:41.261-08:00

Dating doesn't have to be a disaster - 10 Dating Tips for People With Inflammatory Bowel Disease - Health.com

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-16958600288169471722011-12-03T06:04:00.001-08:002011-12-03T06:04:31.181-08:00

Finding Love Online, Despite Health Problems    

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-81673993514014861802011-12-03T06:02:00.001-08:002011-12-03T06:02:48.863-08:00

Sharing a secret - How to Share Health Secrets - Health.com

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Slate /  MEDICAL EXAMINER :  HEALTH AND MEDICINE EXPLAINED.Stolen Notebooks and a Biochemist in ChainsHow did the study of chronic fatigue syndrome come to this?By Julie Rehmeyer|Posted Friday, Dec. 2, 2011, at 5:58 PM ETTwo years ago, Judy Mikovits and the Whittemore-Peterson Institute forNeuro-Immune Disease were triumphant. Mikovits had just published areport in Science pointing to a

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The Bomb Buried In Obamacare Explodes Today-Hallelujah! - Forbes   "the law is – in the main – little more than a successful effort to put an end to some of the more egregious health insurer abuses while creating an environment that should bring more Americans into programs that will give them at least some of the health care coverage they need. "There is, however, one notable exception –

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Top 10 Mysterious Diseases | LiveScience   Chronic Fatigue Syndrome Chronic fatigue is a classic MUPS (medically unexplained physical symptoms) disease, with a diagnosis based only on the ruling out of other possibilities. More than just feeling a little tired, CFS patients are often bed-ridden for days at a time.    * * * Anyone up to writing e-mails to LiveScience explaining all

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Hysteria: Is the Medical Condition Mental, Physical, or Made Up? - The Daily Beast   "The doctors did endless scans and biopsies. They found nothing. "After they didn't see any neurological changes, they started invalidating me—their whole mannerism with me changed," she says. She began to wonder if she was somehow causing the whole thing herself.   "This kind of self-doubt is common for

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-63299739658299537132011-11-30T08:19:00.001-08:002011-11-30T08:19:45.769-08:00

Louie Zamperini, regarding his biography's year on the bestseller list: "I finally beat Seabiscuit!"

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-49918782367292454452011-11-30T07:57:00.001-08:002011-11-30T07:57:34.819-08:00

Herbal Beats Pain Medication in New Arthritis Study! Dear Readers, A new study reported at this year's annual Arthritis World Congress showed that a natural remedy — a special mix of the anti-inflammatory, pain-relieving herbs curcumin and boswellia — was much more powerfully effective at relieving arthritis pain than the medication Celebrex. "Wear-and-tear" arthritis (called

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Dec. 19 extradition hearing for Nevada researcherThe Associated PressMonday, Nov. 28, 2011 | 2:13 p.m.A California judge will decide next month whether a world-renowned  cancer researcher will stand trial in Nevada on charges she stole  samples and notes from a lab at the University of Nevada, Reno.Judy Mikovits, 53, was released from the Ventura County Jail last week  after posting a

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-85846020090782103922011-11-25T08:24:00.001-08:002011-11-25T08:24:21.027-08:00

This is the 6th anniversary of Sophia's death. Take a moment to reflect on all those who've died of this illness that many doctors still consider to be all in our heads. Sophia and M.E. _www.sophiaandme.org.uk_ (http://www.sophiaandme.org.uk) The object of this site is to show how and what was done to Sophia

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-68322824512462899392011-11-24T17:40:00.001-08:002011-11-24T17:40:47.161-08:00

Asthma Diet - Asthma Health Center - EverydayHealth.com   Although there is no conclusive evidence that diet and asthma are related, certain foods are known to activate asthma symptoms because they contain sulfites, a preservative used in certain foods, according to the National Heart, Lung, and Blood Institute. Some of these trigger foods are: Beer Dried fruit Processed potatoes

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Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-87127630485734115652011-11-23T10:25:00.001-08:002011-11-23T10:25:06.781-08:00

  Meredith Vieira's View: The Secret to Being an MS Caregiver - Multiple Sclerosis Center - EverydayHealth.com    

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-53230285322462588082011-11-23T07:28:00.000-08:002011-11-23T07:29:01.737-08:00

Letting Go of What You Can No Longer Do | Psychology Today

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Multiple Sclerosis Risk and Diet - Multiple Sclerosis Center - EverydayHealth.com (CFS and MS have many symptoms in common) In the meantime, a few things are clear about vitamin D and how it works in the body. This nutrient plays a big part in maintaining healthy bodies in general. It helps to maintain the immune system and fight inflammation. It aids in healthy cell growth, which is

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Finally, here are the deets for the court case against Judy Mikovits.Included are the WPI's court documents, which include affidavits byWPI employees Max Pfost and Amanda McKenzie. Also included is theresponse from Judy Mikovits' lawyer to the WPI dated Nov. 4, 2011.Reply To Opposition To Motion For Preliminary Injunctionhttp://www.wpinstitute.org/docs/

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Details Emerge of the Criminal Charges Against Embattled CFS Researcher - ScienceInsider

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Lilly Meehan writes:I have just spoken to David, Judy's husband, who asked me to getthe following message out to the patient community. Dr. Mikovits andthe WPI are in negotiations right now, and the criticism coming fromthe patient community towards the WPI is not helping Dr. Mikovits.They ask that everyone please hold off on their criticism of the WPIfor the sake of Dr. Mikovits and the

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-11038225898369675122011-11-22T07:58:00.000-08:002011-11-22T07:59:05.291-08:00

Guest commentary: End the bias on hiring people with disabilities | Detroit Free Press | freep.com   The unemployment rate is 70.5% among Michigan's more than 730,000 people with disabilities ages 18 to 64. Obviously, Michigan can't underutilize half a million people and not suffer the consequences. People with disabilities must be part of Michigan's competitive strategy -- they need

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"Expression of Concern" on Arrest and Incarceration of Dr. Judy Mikovits - AGE OF AUTISM

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If you would like to make a gift to support Mount Sinai's research efforts to elucidate the complexities of CFS - a collaborative effort of Dr. Enlander and Mount Sinai researchers in genomics, immunology and CFS, you may direct your contribution to me at:The Mount Sinai Development OfficeOne Gustave L. Levy PlaceBox 1049New York, NY 10029Your contribution should be made payable to Mount

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CFS: Once-celebrated researcher Judy Mikovits arrested, held without bail - chicagotribune.com

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-86626946704511919002011-11-21T20:56:00.001-08:002011-11-21T20:56:43.788-08:00

Chronic Fatigue Syndrome: The Silent Suffering » White House Chronicle   These drugs, Ampligen and Retuxin, with their hint of hope in a dark sky, raise a basic societal issue: Is it better for society to pay to make hundreds of thousands of citizens well enough to work, or is the externality of lost work too hard to figure into public health policy and budgeting?   * * * Dr. Jason

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CFS Patient Advocate: Mt. Sinai ME/CFS conference report - Sunday November 20, 2011

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-67452076376538646702011-11-21T13:34:00.001-08:002011-11-21T13:34:44.295-08:00

"I have no mercy or compassion in me for a society that will crush people, and then penalize them for not being able to stand up under the weight." - Malcolm X   * * * Wonder what he'd say about a system that does almost no research into a disease, and then blames patients for not getting better and going back to work?    

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-10567566413855541412011-11-20T13:28:00.001-08:002011-11-20T13:28:48.500-08:00

Note: Terms such as "fugitive" in this situation are not personal orpejorative, simply legal terminology. The noun fugitive from justiceis defined as a person convicted or accused of a crime who hides fromlaw enforcement in the state or flees across state lines to avoidarrest or punishment. Under Article IV, Section 2, Governors arerequired to "deliver up" and return any fugitive from

CFS Factshttp://www.blogger.com/profile/03220068562391501822noreply@blogger.com0tag:blogger.com,1999:blog-5613448952498338108.post-11642418253496621632011-11-20T08:10:00.001-08:002011-11-20T08:10:33.337-08:00

Controversial CFS Researcher Arrested and Jailedby Jon Cohen on 19 November 2011, 6:46 PMJudy Mikovits, who has been in the spotlight for the past 2 yearsafter Science published a controversial report by her group that tieda novel mouse retrovirus to chronic fatigue syndrome (CFS), is nowbehind bars.Sheriffs in Ventura County, California, arrested Mikovits yesterday onfelony charges that

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