Friday, November 25, 2011

RIP Sophia Mirza

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. (

The object of this site is to show how and what was done to Sophia

Thursday, November 24, 2011

Asthma Diet

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
  • Shrimp
  • Wine

Wednesday, November 23, 2011

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

The secret to being a caregiver

Letting Go of What You Can No Longer Do by Toni Bernhard

Symptoms and Vitamins

(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 useful in preventing osteoporosis, a bone-thinning disease that people with multiple sclerosis are at increased risk for. And vitamin D provides a valuable general service in boosting the immune system, which is beneficial since infections can trigger flare-ups of MS symptoms.

People with multiple sclerosis can benefit from keeping their levels of vitamin D high through their diet. Vitamin D is found naturally in certain foods (including fish, cheese, and eggs) and is artificially added to others (milk, breakfast cereals, orange juice, and margarine). But the easiest, cheapest — and possibly best — source of vitamin D is actually our own bodies: When sunlight hits our skin, it triggers our bodies to make vitamin D.

Diet and MS Risk: Vitamin B12
Other data suggest that another vitamin — or the lack thereof — may also play a role in the development of multiple sclerosis. Low levels of vitamin B12 have been linked to more severe MS and more difficulty in recovering from severe attacks, or flares, of the disease. Vitamin B12 is found in such foods as meat, eggs, and fortified milk and is also available through vitamin supplements.



Tuesday, November 22, 2011

WPI's Legal Documents

Finally, here are the deets for the court case against Judy Mikovits.
Included are the WPI's court documents, which include affidavits by
WPI employees Max Pfost and Amanda McKenzie. Also included is the
response from Judy Mikovits' lawyer to the WPI dated Nov. 4, 2011.

Reply To Opposition To Motion For Preliminary Injunction

Exhibit 1: Affidavit of Max Pfost

Exhibit 2: Affidavit of Max Pfost

Exhibit 3: Affidavit of Amanda McKenzie

Details Emerge of the Criminal Charges Against Embattled CFS Researcher

Message from Dr.Judy's husband

Lilly Meehan writes:

I have just spoken to David, Judy's husband, who asked me to get
the following message out to the patient community. Dr. Mikovits and
the WPI are in negotiations right now, and the criticism coming from
the patient community towards the WPI is not helping Dr. Mikovits.

They ask that everyone please hold off on their criticism of the WPI
for the sake of Dr. Mikovits and the negotiations in progress.

Many have asked me what they can do to help, and at the moment this is what
you can do: please, everyone, despite the strong feelings everyone is
experiencing, please back off in the furor being expressed online and
in direct contact with the WPI.

Please stop and urge your friends tostop. Later today Dr. Mikovits'
husband is planning to send a direct
message, but for now has asked me to convey this message to all of
you. Permission to repost

   This message has been reviewed and approved by David, husband of
Dr. Mikovits.

   Thank you everyone,

   Lilly Meehan

End the bias on hiring people with disabilities

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 opportunities to work.

Unfortunately, employing people with disabilities is hard, because our prejudices keep messing with our ability to act in our own self-interest. In this economy, that's a big negative, and in Michigan it's getting bigger. Disability discrimination complaints have overtaken gender-based complaints and are now 20% of complaints filed with the state Department of Civil Rights, second only to race.

* * *

Most people with a disability would love to work.  Unfortunately, employers are not interested in thinking outside the box.

I was tops in my field.  I applied for a job where it was slipped that I was the front-runner for the position.  Then they mentioned that every now and again, I would have to drive somewhere to drop off some papers.  I don't drive, but mentioned that I knew a really good courier service -- they do the non-productive driving, I stay at my desk producing more value than their bill costs.  Over something that was less than 1% of the job duties, for which there was an easy solution, I lost the job.  They suddenly added "must speak Chinese" to the qualifications to justify hiring someone else, because that was a skill I don't have, so if I sued, they could argue I was not qualified for the job.

If you don't drive, the first thing that comes to most people's minds is epilepsy, and the fear that you'll injure yourself falling to the floor or embarrass the employer by having a seizure in front of clients.  That's not my reason for not driving, but people don't ask, they just assume.



"Expression of Concern" on Arrest and Incarceration of Dr. Judy Mikovits

Donations to Enlander's Mt.Sinai research group

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 Office
One Gustave L. Levy Place
Box 1049
New York, NY 10029
Your contribution should be made payable to Mount Sinai School of Medicine and can reference CFS research in the memo line. We already have established a fund for this purpose and it will be directed accordingly. And of course, we would be very please to keep you updated on the progress of our efforts. Meantime, if you have any questions, please let me know.

Best regards,
Tara Pometti

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

Monday, November 21, 2011

Chronic Fatigue Syndrome: The Silent Suffering

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 estimates the annual loss to be $26B in income.  Rough figures, that equates to $5B in lost tax revenue every year.  That would help balance the Federal budget, if only they'd do what needs to be done to get us healthy and back to work.
Instead, they point the finger at patients, blaming us for not recovering enough to get back to work rather than at themselves for not doing enough to find the cure that gets us back to work.   

CFS Patient Advocate: Mt. Sinai ME/CFS conference report

Quote of the Day

"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?


Sunday, November 20, 2011

Legal definition of "fugitive from justice"

Note: Terms such as "fugitive" in this situation are not personal or
pejorative, simply legal terminology. The noun fugitive from justice
is defined as a person convicted or accused of a crime who hides from
law enforcement in the state or flees across state lines to avoid
arrest or punishment. Under Article IV, Section 2, Governors are
required to "deliver up" and return any fugitive from justice to the
state where they allegedly committed the crime, a process called

As the issue has not yet been tried in a court of law please note that
the crime is alleged not proven. Regardless of why Dr. Mikovits is in
a different state, the legal view is that she is now in a different
state than the one in which charges were filed.  In the U.S. justice
system, legal terms are not rearranged to suit each individual
circumstance, but rather the same language is used regardless of
individual circumstances.

Factual information regarding Dr. Mikovits arrest:

According to Retraction Watch, the Ventura County, California
Sheriff's Department web site lists Mikovits under booking number
1259336, charged with a felony violation of California Penal Code
section 1551.1, "Fugitive From Justice."  This is that section,
according to FindLaw:

The arrest of a person may also be lawfully made by any peace officer,
without a warrant, upon reasonable information that the accused stands
charged in the courts of any other state with a crime punishable by
death or imprisonment for a term exceeding one year, or that the
person has been convicted of a crime punishable in the state of
conviction by imprisonment for a term exceeding one year and
thereafter escaped from confinement or violated the terms of his or
her bail, probation or parole. When so arrested the accused shall be
taken before a magistrate with all practicable speed and complaint
shall be made against him or her under oath setting forth the ground
for the arrest as in Section 1551.

More on Mikovits arrest

Controversial CFS Researcher Arrested and Jailed
by Jon Cohen on 19 November 2011, 6:46 PM

Judy Mikovits, who has been in the spotlight for the past 2 years
after Science published a controversial report by her group that tied
a novel mouse retrovirus to chronic fatigue syndrome (CFS), is now
behind bars.

Sheriffs in Ventura County, California, arrested Mikovits yesterday on
felony charges that she is a fugitive from justice. She is being held
at the Todd Road Jail in Santa Paula without bail. But ScienceInsider
could obtain only sketchy details about the specific charges against

The Ventura County sheriff's office told ScienceInsider that it had no
available details about the charges and was acting upon a warrant
issued by Washoe County in Nevada. A spokesperson for the Washoe
County Sheriff's Office told ScienceInsider that it did not issue the
warrant, nor did the Reno or Sparks police department. He said it
could be from one of several federal agencies in Washoe County.

Lois Hart, one of Mikovits's attorneys, says her client is being held
for extradition to Reno, Nevada, in relation to a civil lawsuit
against her filed by the Whittemore Peterson Institute for
Neuro-Immune Disease (WPI). Mikovits worked as the research director
at WPI, a nonprofit in Reno, for 2 years until she was fired by its
president, Annette Whittemore, on 29 September. On 4 November, WPI
filed suit against Mikovits, alleging that she had wrongfully kept her
laboratory notebooks and other information about her work for the
fledgling institute on her laptop, in flash drives, and in a personal
e-mail account. A preliminary injunction in the case is set to be held
by Nevada's Second District Judicial Court on 22 November. On that
same day, Mikovits has a hearing in Ventura County, California, where
she can contest extradition, Hart says.

Annette and her husband Harvey Whittemore, who has worked as a
high-profile attorney for the gaming industry and a major real estate
developer, started WPI to help find causes and treatments for CFS and
other neuroimmune diseases like Gulf War syndrome and fibromyalgia.
Their adult daughter has CFS.

Hart strongly denied the charges against her client. "She does not
have the notebooks, nor any 'proprietary items' from WPI," Hart wrote
ScienceInsider in an e-mail. "She is entitled to a copy of the
information she created."

On 7 November, a judge from the Nevada court granted a request for a
temporary restraining order against Mikovits to prohibit her from
"destroying, altering, disseminating, or using trade secrets and
confidential information." The order contended that "immediate and
irreparable injury, loss, or damage will result to WPI if it does not
get this relief." But the order does not explicitly forbid Mikovits,
who lives in Ventura, California, from leaving the state of Nevada.

After Mikovits and her research team's Science study appeared in
October 2009, many other groups around the world reported that they
could not find the mouse retrovirus, dubbed XMRV, in people who had
CFS. Mikovits and colleagues subsequently participated in a multilab
study that resulted in a September Science Express paper describing
how none of the teams could reliably find XMRV in blinded samples from
CFS patients. One lab Mikovits collaborated with in the 2009 Science
report simultaneously retracted its contribution after discovering
that a contaminant explained its XMRV findings.

UPDATE, November 19, 7:39pm EST:

Annette Whittemore, president of the Whittemore Peterson Institute,
has issued the following statement:

"The Whittemore Peterson Institute was required to report the theft of
its laboratory materials to law enforcement authorities. These
authorities are taking the actions that they deem necessary."

Some Chase Community Giving Statistics

As nobody was doing this (that I know of), for recent leaderboards I
have been following the votes being got by the leading 9 ME/CFS groups
along with how much 100th position has gone up by (101st would be
slightly more interesting but one can't see that).

For the last 7 12-hour periods, 100th position has gone up by
(chronologically): +39, +44, +53, +40, +61, +75, +50. At the last
leaderboard 100th was at 882 votes. That's with 2 days, 6 hours to go.

Looking at the last two jumps (i.e. +75 and +50) (it would be extra
work for me to calculate too many periods) apart from the IACFS/ME,
the groups have been losing ground.

It is going to be touch-and-go for lots of groups whether they get the
$25,000 or not.

IL  (+74) 1,228 (+53) 1,281

1,194 (+37) 1,231

#56 MASSACHUSETTS CFIDS/ME & FM ASSOCIATION Quincy, MA (+52) 1,016 (+50) 1,066

#72 ROCKY MOUNTAIN CFS/ME AND FM ASSOCIATION Denver, CO (+38) 931 (+36) 967

Sun Prairie, WI (+42) 906 (+39) 945

(+47) 862 (+36) 896

#93 NJCFSA Florham Park, NJ (+54) 850 (+43) 893

#158 CFOG, INC Kennesaw, GA  (+47) 481 (+31) 512

INC Milford, CT (+20) 368  (+23) 391

In previous CCG contests, there has been a charge towards the end of
the contest from other groups. As is clear, the ME/CFS are generally
just hanging in there - not keeping up with how much 100th is jumping
up by but perhaps able to hold on if things go right. 4 groups are
within 85 votes of 100th position.

A few votes could make all the difference ...

Tom Kindlon
(Twitter: @TomKindlon)