Friday, January 6, 2012

Suzy Chapman's blog moved!

Please note that Suzy Chapman's blog, DSM-5 watch, has moved to . The reasons are Orwellian, Suzy says here

"Until last week, my website published under the domain name .
On December 22, I was stunned to receive two emails from the Licensing and Permissions department of American Psychiatric Publishing, claiming that the domain name my site operates under was infringing upon the DSM 5 trademark in violation of United States Trademark Law and that my unauthorized actions may subject me to contributory infringement liability including increased damages for willful infringement. I was told to cease and desist immediately all use of the DSM 5 mark and to provide documentation within ten days confirming I had done so."

"Given my limited resources compared with APA's deep pockets, I had no choice but to comply and was forced to change my site's domain name to Hits to the new site have plummeted dramatically and it will take months for traffic to recover - just at the time when crucial DSM 5 decisions are being made."

Please spread the word.

Thursday, January 5, 2012

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 combined," Dr. David Himmelstein, a co-author of the study and an associate professor of medicine at Harvard.

* * *

Makes me wonder, how many die who have insurance and still can't get good care?  The group of us who wrote the Obama Transition Team report on CFS and healthcare all had gold-plated insurance, but it doesn't matter how good your insurance is if your doctor doesn't have the first clue about what's wrong.  Between the half-dozen of us, we got a variety of misdiagnoses, but the point isn't that we got different diagnoses, the point is that none of us started out with ME/CFS.  Some were diagnosed with "all in your head" by someone who has almost no psych training -- the equivalent of my taking Psych 101 in college -- and therefore not qualified to make such a diagnosis and place it in medical records as definitive.  No one but a licensed psychiatrist should be permitted to place a psych diagnosis in medical records.

Wednesday, January 4, 2012

Tuesday, January 3, 2012

Pregnancy and ME/CFS

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 feeling better than ever.  One patient told me that she felt so wonderful that she would love to be perpetually pregnant (her husband, however, drew the line at supporting six children).
Since there's been no research, we really don't know if the virus will pass to the baby during pregnancy or via breast-feeding.  We do know that there are children born to PWC mothers who've had CFS since infancy, though we're not sure how and when the baby was infected.
If you really want to have children, can't imagine life without them, understand that there may be risks involved.  We just aren't sure what they are.

ME, CFS, ME/CFS or not? Argument by Tom Hennessy

"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."

Coping With HIV Medicine Side Effects - HIV Center - EverydayHealth

"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 HIV medicines may also cause damage to your liver"
"Rash. This symptom is often part of a hypersensitivity reaction (allergic reaction) to your HIV medicine. You should always let your doctor know if you have a rash because this can become life threatening."
Pro and con: one person told me to absolutely not take AIDS meds for my CFS "they're toxic and may kill you."  Conversely, a PhD virologist pointed out to me that duh, they have to be toxic to kill the virus, and stated flat out that "if it were me, I'd be on AZT in a heartbeat".
At this point, I don't know what virus I have.  C-Reactive Protein says there's some infection/inflammation going on in my body, but doesn't identify which one -- for my purposes at the time, it was enough to have a wildly abnormal objective blood test to prove it's not all in my head.  Knowing that the first XMRV test was simply preliminary, they were working to improve it, I held off on having that done.  And also a bit of concern that if I had an XMRV test and it was negative, the Disability judge who was cherry-picking evidence was likely to say "she doesn't have XMRV, therefore she's not disabled", once again ignoring that the C-RP showed something way out of whack.  Now XMRV testing has been discontinued.
So I haven't yet had to make the decision whether to risk my future by taking AZT in the present.  My health is slowly improving without it.  When the time comes that someone does identify which virus I have, and recommends AIDS meds, I will have to sit down and do some long hard thinking, and debating with my advisors.  I came to grips with my own mortality at 29 during my first relapse, and realized that in those short years I'd done and experienced more than many people do before they die; if I never got out of the bed, I'd still be able to point to a lot of things I'd accomplished.  In the decades since then, I've accomplished more.  There are still things I'd like to do (write that book, for one), but I'm tired of living the life I'm living -- if some drug can give me improved quality of life now at the expense of taking 10 years off the end of my life, it'll probably be a trade I'm willing to make.

Stem Cell Scheme: FBI Arrests Three Men Allegedly Peddling Miracle Cure

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 his magic pills due to my numerous allergies, they refused to even tell me if I was allergic to anything in his concoction until I paid a huge amount of cash for a first appointment (the doctor's office didn't take insurance).  Enough about him and his website raised red flags that I opted not to spend my money.  It sounded to me like the 20% he was curing had "chronic fatigue" as a symptom rather than "Chronic Fatigue SYNDROME".
Yes, my level of fatigue increases when I don't sleep well (DUH!), but even when the insomnia is fixed I have residual symptoms.  For me, insomnia is a symptom, not the root cause.

Monday, January 2, 2012


Save money and help others -- check website for coupons 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.

Into 2012 without Cure or Care

 Into 2012 without Cure or Care

JANUARY 2, 2012 2:18PM
ME/CFS: Into 2012 without Cure or Care

By Llewellyn King

It's an indecent disease, shrouded in mystery, endless in suffering,
in stigma and in despair. It's a life sentence and many of those who
are afflicted take their own lives, according to patient advocates.

Witness this e-mail I received from a woman on New Year's Eve: "Today,
December 31, is my birthday. I will not get to eat out, have a party
tonight. ... I am not sure I can hang on another year, when every day
is so hard to get through. Just a few weeks ago, a doctor laughed at
me and said there was no such thing as [my disease], and my husband
just sat there, not once backing me. That was more hurt than I can
carry for another year. I pray every night, 'Now I lay me down to
sleep and please, Lord, take me before I wake.' "

This scourge, this foul and stealthy confiscation of life, is so
little understood that there's even confusion about its name.

In the United States, the disease is known as Chronic Fatigue Syndrome
(CFS): a bland and trivializing nom de plume bestowed on the disease
by the Centers for Disease Control in Atlanta. Elsewhere in the world,
it's known as myalgic encephalomyelitis (ME). American patients tend
to use both names and the acronym ME/CFS.

I've been writing about ME/CFS for three years. But in more than 50
years of journalism, I've never had so much reader response. So many
cries from the heart. So much gratitude for doing so little.

The disease is socially ecumenical and afflicts an estimated 1 million
people in the United States and 17 million worldwide. I hear from a
great cross section of the ME/CFS community who have access to a
computer and are well enough to use it. There are many sufferers who
aren't well enough to e-mail; they're severely debilitated and
bedridden for months and years.

Deborah Waroff, a colleague of mine from the 1970s, who's been sick
for more than two decades, describes a period of total disability she
suffered in 2003 and 2004, when she lay on her apartment couch too
sick even to watch television, as "lying in your own coffin."

There is no known route to infection, no diagnoses and no cure.
Research has been scattered and funded grudgingly at such low levels
that Dr. Fred Volinsky of Boston has calculated annual federal funding
for ME/CFS at only $1.25 per patient compared to $400 for multiple

Last year was especially sad because many patients and some
researchers had pinned their hopes on a retrovirus called XMRV. Most
of the work on this line was done at the Whittemore Peterson Institute
in Reno, Nev., a private research facility founded by the Whittemore
family. It now appears that promising conclusions were the result of
laboratory contamination, and a paper in Science magazine had to be
withdrawn. Worse, there's an ugly dispute between the institute and
its former chief research scientist Judy Mikovits. Because there's
low-level contagion in families and cluster outbreaks of ME/CFS, the
idea that there's a virus at work can't be discredited entirely.

There are parallels as well as dissimilarities to the early days of
the AIDS. For AIDS, the stigma was sexual; for ME/CFS, the stigma is

As doctors have no diagnostic procedure for ME/CFS, they dismiss it as
imaginary, psychosomatic or sloth. Families believe the disease is
sloth: Sons have written to me because their fathers disowned them,
believing that they are just layabouts.

Some sufferers are homeless, according to Dr. Leonard Jason of DePaul
University, abandoned to life on the streets. He tells of one
unfortunate living in a car.

Hospital emergency rooms have no tools, no knowledge. In the frenzy of
the just-in-time nature of emergency room medicine, there's no care
there for ME/CFS victims. There's precious little in the way of
charity funding or home visits, unless the patient has family support
they are on their own, alone.

A cure this year is unlikely, but better understanding can start today. Now.

Wanted: A high-energy, high-profile celebrity to do for ME/CFS what
Elizabeth Taylor did for AIDS, what Jerry Lewis did for muscular
dystrophy, and what Michael J. Fox is doing for Parkinson's: raising
concern, raising money and banishing stigma. Fox has raised $264
million for Parkinson's. By contrast, the Chronic Fatigue Immune
Deficiency Syndrome Association targeted raising just $2 million for
research last year.

Maybe in 2012 the voiceless victims of ME/CFS will be heard, even faintly.

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."

If A Scientific Finding Was Retracted, They Know it Must Be True


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 with worms, thereby creating caterpillars
(c) Appendicitis should be treated with antibiotics rather than surgery
(d) Litter breeds crime and discrimination
(e) Chronic fatigue syndrome is caused by a virus

In those circles where putative findings are embraced not for truth value but for emotional impact and political utility, a retraction is the ultimate confirmation that a study's results are true. After all "they" (there is always a "they") couldn't deal with the truth, so they had it suppressed. The surgeons' guild had the guy who promoted antibiotics discredited, the pharmaceutical industry smeared the people who proved that CFS is caused by a virus, and the vicious drug warriors threatened the marijuana researchers into withdrawing their dispensaries and crime study results.