Friday, January 22, 2010

New Dr. Klimas Q&A

January 21, 2010, 11:01 am
Fibromyalgia, H.I.V. and Chronic Fatigue

When The New York Times reported on a possible link between a virus
called XMRV and chronic fatigue syndrome, many readers had questions.
Here, Dr. Nancy G. Klimas, who serves on the board of the
International Association for Chronic Fatigue Syndrome, responds to
readers' questions about fibromyalgia, H.I.V., cystitis and chronic
fatigue syndrome. Dr. Klimas is a director of the department of
immunology of the University of Miami School of Medicine and director
of research for clinical AIDS/H.I.V. research at the Miami Veterans
Affairs Medical Center.

Sacramento County probe of in-home care turns up 19 felony cases


"A task force established to ferret out fraud in Sacramento County's extensive network of In-Home Supportive Services has turned up 19 felony cases  ... among 42,000 caregivers and clients."

"The Governor's Office has claimed a 25 percent statewide fraud rate in IHSS.  A 2007 state audit, though, found only 1 percent of IHSS cases involved fraudulent overpayment.  And critics of such task forces say the scope of IHSS fraud doesn't warrant the amount of time and public money devoted to them."
"It's not a home health agency with a layer of other management," said Ross. "You're only paying for the service provider, not the supervisory structure. New York has an agency-based model, and it's far more expensive than California's. What's often lost in the debate here is that this is a virtually no-overhead program."
* * *
As usual, while rich doctors and medical supply companies rob Medicare/Medicaid for billions of goods and services not even provided, a few extra dollars paid to the impoverished masses who really are performing their thankless jobs is what really inspires the government to do an in-depth investigation, spending more on the investigation than the savings produced.  These are not people who are jetting off to the Bahamas on their ill-gotten gains -- they are too busy changing Grandma's diapers to take a day off.

Wednesday, January 20, 2010

Why ME/CFS may kill you

Rebuilding in the face of loss.   Web version:     Font Size:   A   A   A,cs6g,6k,8lrk,kkzx,7xo1,2hxa ME/CFS HealthWatch     January 20, 2010
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· Dr. Mikovits Q&A This Friday
· Rebuilding in the face of loss
· "Why ME/CFS may kill you"
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Dr. Bateman XMRV Slides (PDF)
From Jan 18 webinar - at CFIDS Assoc website

Dr. Klimas Opens Miami ME/CFS Clinic
Place for real diagnosis of a real disease

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THIS FRIDAY, Jan 22 - The Mikovits Update on XMRV and ME/CFS

XMRV expert Judy Mikovits is a dynamo, bursting with info on the big picture, recent advances, and potentially life-changing plans for ME/CFS patients worldwide.

In an event you can watch on, the high-profile virologist says she plans to dispel rampant myths & fears. And, given all the uproar over failure to replicate results in the UK, you still have an opportunity to submit some burning questions! read more »

ME/CFS NEWS & HEADLINES view more,cs6g,6k,jhbp,g6zx,7xo1,2hxa
WPI Produces 'More Sensitive', Lower Cost XMRV Test

ME/CFS: Building a Different Life In the Face of Loss

Tests Point to 'CNS Sensitization' in ME/CFS with Pain

UK Team Disputes XMRV-CFS Link... US Researchers Return Fire!

Why ME/CFS May Kill You: Taking the Measure of Cardiac Risk

PREVIOUS HEADLINES view more,cs6g,6k,iur2,cgdk,7xo1,2hxa
Underactive Adrenal Gland - Problems with the CFS 'Gear Box'

Coenzyme Q10: ME/CFS Energy Maker

New Japanese Test to Diagnose ME/CFS - Breakthrough, or Not?

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Comments & Suggestions
· Improved XMRV test
· Pain signaling discovery
· Learn soothing massage
· PTSD forum helps
· Sjogren's affecting digestion
· Disability Lawyers List

· PDR Site for Patients
· Lyme strain severity differs
· What helps my POTS
· Bipolar support groups
· Dr. Elaine DeFrietas
· Online CFS/FM dating!

Questions? Comments? Please share your thoughts with us!

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Tuesday, January 19, 2010

Helene Jorgensen, Author of "Sick and Tired" to speak in DC


National Capital Lyme

& Tick-Borne Disease Association

Announces its February Speaker 
Helene Jorgensen
 Helene Jorgensen (Ph.D. American University, Economics; M.S., George Mason University, Environmental Science and Policy) studies health care, labor markets, and employment benefits. Her forthcoming book, Sick and Tired: How the U.S. Health Care System Fails Its Patients (Polipoint Press, February 2010), tells the story of her own battle with Lyme disease and examines the institutional failures of the health care system.
 Sunday, February 7, 2010

Presentation & Book Signing: 2 - 4 PM

  Ernst Auditorium
Sibley Memorial Hospital
5255 Loughboro Rd., N.W., Washington, DC 20016
Helene Jorgensen spent many sleepless nights worrying about her growing pile of medical bills. Since being diagnosed with neurological Lyme disease in 2003, her good-on-paper health insurance repeatedly denied claims. She got stuck with paying thousands of dollars out-of-pocket, because of quantity limits on prescription drugs and out-of-network care. At the same time, she had to fight for continued treatment for her Lyme disease. 
Sick, sleep deprived and frustrated, Jorgensen set out to uncover why the health care system was failing her and so many other patients. What she learned surprised her and compelled her to write the book: Sick and Tired: How the U.S. Health Care System Fails Its Patients (Polipoint Press, February 2010).

In Sick and Tired, Jorgensen combines her own experiences as a patient, with her background as an economist, to discuss the role of insurance companies in determining care. She examines the incentive structures of health care providers. She exposes pharmaceutical companies influence over prescription patterns, and the deceptive billing practices by laboratories, such as Quest Diagnostics. Based on the lessons she learned, Jorgensen offers practical advice to help patients reduce their health care costs and demand better care.

This education, discussion and support group is sponsored by the National Capital Lyme & Tick-Borne Disease Association for patients, their family members and friends.

 Attendees may be chemically sensitive: No scented products, please.  For information and directions. See  or call (703) 821-8833

National Capital Lyme & Tick-Borne Disease Association
Phone & fax: 703-821-8833

 Any information provided is for the reader's own evaluation and is not offered as and should not be considered medical advice.  A licensed physician should always be consulted when considering medical decisions and nothing herein may be used in place of advice from your personal physician or other healthcare professional.  Links to other sites are provided for ease of research only. Information on those sites is the product of the website author and represents the opinion of those who publish the sites and does not necessarily reflect the opinion or judgment of the National Capital Lyme & Tick-Borne Disease Association.

* * *
There's the problem: "her good-on-paper health insurance".  A lot of us had what we thought was good health insurance.  Part of the problem, though, is finding a doctor who both knows about CFS *and* takes your insurance.  And part of the problem -- perhaps bigger now than it used to be -- is whether the insurance is going to pay for what it's supposed to.
My insurance told one of my doctors that the PPO1000 policy would cover his treatment, about $3000 worth, and I'd only have to pay the co-pay.  When he submitted the bill, he was informed they would *not* cover the treatment.  Apparently because I'm not just any PPO1000 member -- I'm one who's had my policy gutted so it only covers hospitalization, and no longer all the other things that it says in the sales brochure.
I've had other things rejected for "pre-existing condition", even though I have never been uninsured since getting CFS, and had been with the same company continuously for 10 years at the time.  Most pre-existing limitations are for the first two years of the policy, and I was well beyond that.

Calif. To Set Maximum Wait for Medical Appointments

"Regulations to be announced Wednesday require family practitioners in health maintenance organizations to see patients seeking an appointment within 10 business days. The deadline for specialists is 15 days.  A patient seeking urgent care that does not require prior authorization must see a doctor within 48 hours."
The medical groups I went to at the beginning of this relapse always told me "the first available appointment is in 6-10 weeks; if you need to be seen sooner, go to the ER".  (Which then produced the decree from the HMO that they were not authorizing the ER for something that could be treated in a doctor's office, so you'd call the doctor's office back and be told again to go to the ER, and the HMO would repeat that they weren't paying for the ER, go to your PCP ... until finally you decide that it's not worth $1000 out of your pocket, or that you don't have the $1000, to go to the ER, so you're going to play "wait and see" until you get sick enough for the HMO to authorize the ER visit, because now you're sick enough to likely need hospitalization.)
At one of those medical groups, my long-time doctor was able to finagle me a specialist appointment in about 4 weeks by begging him to stay late on a Friday.  At the other, it took about a month just for the appointment clerk to get around to making the specialist appointment for me (patients can't do it for themselves), and then another 2 months after she finally scheduled it before I actually had the appointment -- 3 months between the day I was told to see a specialist and the day I finally did.
My current doctor is part of a different medical group, which 15 or so years ago decreed that they were tired of people going to the ER with things that could be treated in a regular office visit, and therefore they leave 25% of their appointment times open for last-minute scheduling.  The HMO doctors swore up and down that they would lose money with this method, but in fact, these doctors rarely have any unused slots during the day.  There are always those who are thrilled to be told "we can see you in one hour".
Which is a lot better than the standing joke about one medical group that you had to make your pre-natal appointment before you even got pregnant, in hopes of having your first check-up a week before the baby arrived.

Webinar online


The CFIDS Association of America A participant in yesterday's webinar, Luminescentfeeling, has posted the program on YouTube in 8 parts. You can view it on our SolveCFS YouTube channel, starting with part 1 at

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Mayo Clinic CFS research is recruiting

Source: NIH
Date:   January 11, 2010

A pilot study of Amygdala retraining program in patients with
Chronic Fatigue Syndrome, Chronic Fatigue and Fibromyalgia

    This study is currently recruiting participants.
    Verified by Mayo Clinic, January 2010
    First Received: January 11, 2010 No Changes Posted
    Sponsor:                       Mayo Clinic
    Information provided by:       Mayo Clinic Identifier: NCT01046370


The purpose of this pilot study is to gather preliminary data on the
efficacy and feasibility of the Amygdala Retraining Program (ARP),
a mind-body practice versus a control (C) on fatigue, quality of life
and sleep in patients with Chronic Fatigue Syndrome (CFS), Chronic
Fatigue (CF) and Fibromyalgia (FM).

CFS, CF and FM are incapacitating disorders characterized by profound
fatigue, muscle pain, impaired memory, insomnia, and post-exertional
malaise (Fukuda 1994). Current literature points to a centrally
sensitized state in CFS, CF and FM (Meeus 2007). The ARP attempts to
retrain this neuronal network through mind-body practices such as
cognitive restructuring via neurolinguistic programming, yoga based
breathing and simple mindfulness based meditation. A case series of
33 patients with CFS and ARP reported improvement in 92% of patients
with two-thirds of patients reaching 80-100% of pre-illness levels of
health (Gupta 2009). However ARP has never been formally studied in

We propose to gather preliminary data on the efficacy and feasibility
of ARP versus C on fatigue, quality of life and sleep in 30 patients
with CFS, CF and FM. All participants will undergo standard clinical
treatment which consist of a 2 day self-management program in the
Chronic Fatigue Clinic. Following this, participants will be
randomized into the ARP or C group. The ARP group will receive an
additional 2.5 hour training surrounding core concepts of the ARP
program. They will then be given the ARP DVD program and booklet, to
reinforce and continue the practice. They will then receive scheduled
bi-monthly phone calls for 3 months from a study investigator for
support. The C group will receive only standard care. However they
will receive a complementary copy of the ARP program at the end of
the study (6 month time point) as a gift for participation in the

Preliminary data on efficacy will be assessed at baseline, 1, 3 and
6 months using the following validated questionnaires:
Multidimensional Fatigue Inventory (MDFI), Short form-36 (SF36)
Fibromyalgia Impact Questionnaire (FIQ), Epworth Sleep Scale (ESS)
and Measure Your Medical Outcome Profile (MYMOP-2). Feasibility
will be assessed by evaluation of a daily practice log where patients
record the total time spent daily in the practice of ARP and any
specific difficulties they encountered in the practice of the program.

Condition                  Intervention
Chronic Fatigue Syndrome   Behavioral: Amygdala Retraining Program
Chronic Fatigue

Study Type:     Interventional
Study Design:   Treatment, Randomized, Open Label, Parallel Assignment,
                Efficacy Study
Official Title: A Pilot Study of Amygdala Retraining Program (ARP)
                Versus Control (C) in Patients With Chronic Fatigue
                Syndrome (CFS), Chronic Fatigue (CF) and Fibromyalgia

Resource links provided by NLM:

MedlinePlus related topics: Chronic Fatigue Syndrome Fibromyalgia
U.S. FDA Resources

Further study details as provided by Mayo Clinic:

Primary Outcome Measures:
* chronic fatigue syndrome, chronic fatigue and fibromyalgia
  symptom severity [Time Frame: 6 months] [Designated as safety
  issue: No]

Secondary Outcome Measures:

* fatigue as assessed by Multidimensional Fatigue Inventory (MDFI)
  and Epworth Sleep Scale (ESS) [Time Frame: 6 months] [Designated
  as safety issue: No]
* pain as assessed by the Fibromyalgia Impact Questionnaire (FIQ)
  and Measure Your Medical Outcome Profile (MYMOP-2) [Time Frame: 6
  months] [Designated as safety issue: No]
* quality of life as assessed by the Short Form-36 (SF-36) [Time
  Frame: 6 months] [Designated as safety issue: No]

Estimated Enrollment:              30
Study Start Date:                  October 2009
Estimated Study Completion Date:   July 2010
Estimated Primary Completion Date: June 2010 (Final data collection
                                   date for primary outcome measure)

Arms              Assigned Interventions
ARP               Behavioral: Amygdala Retraining Program
intervention:     The Amygdala Retraining Program (ARP) attempts to
Experimental      retrain the sensitized neuronal network present in
                  patients with Chronic Fatigue Syndrome, Chronic
                  Fatigue and Fibromyalgia through mind-body practices
                  such as cognitive restructuring via neurolinguistic
                  programming, yoga based breathing and simple
                  mindfulness based meditation.
No intervention:
No Intervention


Ages Eligible for Study:     18 Years to 59 Years
Genders Eligible for Study:  Both
Accepts Healthy Volunteers:  No


Inclusion Criteria:

* meet CDC criteria for Chronic Fatigue Syndrome, have been diagnosed
  with chronic fatigue, or meet the American College of Rheumatology
  criteria for fibromyalgia
* access to a DVD player

Exclusion Criteria:

* untreated hypo or hyper parathyroidism
* untreated adrenal disorders
* untreated diabetes
* multiple sclerosis
* acute or chronic hepatitis
* history of cancer
* untreated depression
* chronic steroid use
* acute inflammatory rheumatological conditions
* untreated obstructive sleep apnea
* narcolepsy

Contacts and Locations

Please refer to this study by its identifier: NCT01046370


Contact: Ann Vincent, MBBS, MD 507-284-3244


United States, Minnesota

Mayo Clinic in Rochester Recruiting
Rochester, Minnesota, United States, 55905
Principal Investigator: Ann Vincent, MBBS, MD
Principal Investigator: Lana L Abboud
Sub-Investigator: Connie A Luedtke, RN
Sub-Investigator: Janet A Guderian, RN
Sub-Investigator: Loren L Toussaint, PhD

Sponsors and Collaborators

Mayo Clinic


Principal Investigator: Ann Vincent, MBBS, MD Mayo Clinic

More Information

No publications provided

Responsible Party:    Mayo Clinic (Ann Vincent, MBBS, MD)
Study ID Numbers:     09-003509
Study First Received: January 11, 2010
Last Updated:         January 11, 2010 Identifier: NCT01046370
                      History of Changes
Health Authority:    United States: Institutional Review Board

Additional relevant MeSH terms:
   Myofascial Pain Syndromes
   Nervous System Diseases
   Central Nervous System Diseases
   Rheumatic Diseases
   Fatigue Syndrome, Chronic
   Virus Diseases
   Signs and Symptoms
   Pathologic Processes
   Muscular Diseases
   Musculoskeletal Diseases
   Neuromuscular Diseases
   Syndrome processed this record on January 14, 2010

(c) 2010 National Institutes of Health

XMRV Lecture by Dr. David Bell

Fear of the contamination of the blood supply might be what creates alot of attention on CFS and XMRV. He stated that virologists seem to be very interested in XMRV.

He also thought CFS may just be the beginning of what diseases XMRV may have a hand in. He stated that fibromyalgia and multiple sclerosis might be XMRV related.

Monday, January 18, 2010

Flu Self-Help

"Feel flu symptoms coming on? This can help: Take high-dose vitamin C (4,000 mg), zinc, vitamin D and a healthy serving of medicinal herbal tinctures such as black elderberry or astragalus. Go right to bed and allow yourself as much sleep as you need (even 10 - 12 hours). This can often stop the flu right in its tracks."
Personally, I take 5000 mg of C appx once an hour (whenever I think of it) for cold/flu/sore throat.  C is one of the vitamins where any excess just comes right back out, you can't overdose, and some doctors administer as much as 50-100,000 mg per day for critical cases.  Lots of tea (or hot lemonade) with honey, alternating with chicken soup. 


Webinar a Success!

First 2010 Webinar A Success!

On January 18, 2010, the Association held its first in a series of online seminars ("webinars") with 624 preregistrants and 369 participants during the program.

XMRV: Implications for CFS
Speaker: Lucinda Bateman, MD of Fatigue Consultation Clinic in Salt Lake CityModerated by Suzanne D. Vernon, PhD

Dr. Lucinda Bateman, an internist whose practice is dedicated to the management and care of chronic fatigue syndrome (CFS) and fibromyalgia, walks through the basics of the latest research linking XMRV (a human retrovirus) and CFS. She will also share some insights into what this discovery might mean for the field and for patients, as well as her perspective on other current research efforts. 

Dr. Suzanne Vernon is the CFIDS Association's scientific director. She holds her doctorate in virology from the University of Wisconsin and had 17 years experience in public health research on infectious diseases before joining the Association's staff in 2007 to lead its research program. Dr. Vernon will moderate the program. For up-to-date information about XMRV including links to three articles written by Dr. Vernon about recent studies, please visit the Association's web site at

Unfortunately, a technical problem that occurred during the presentation prevents us from posting an archived version as we had hoped, but the presentation slides can be viewed at Dr. Bateman has agreed to present an updated program on the same topic in February, as schedules permit. She may have additional news and data to share at that time.

More information about the blood biomarker study being conducted at the University of Utah by Drs. Kathleen and Alan Light (slide #26) can be found at An illustration similar to the one in Dr. Bateman's slides appeared on the cover of the Journal of Pain in October 2009. Updates from all the researchers currently funded by the CFIDS Association of America can be found at

Program participants scored very high satisfaction levels for this program and presenters Drs. Bateman and Vernon. The CFIDS Association will be announcing new topics and dates for its new webinar programs. Check the website for news or receive it by email through our CFIDSLink monthly e-newsletter. We hope you'll join us!


Dr. Klimas' new clinic in Florida


Dr. Nancy Klimas' new ME/CFS Clinic near Miami . . . a place of welcome

Comfortable, electrically controlled massage recliners in a doctor's
reception area?

Such patient comfort measures are only the first of several striking
features that indicate that this is no ordinary doctor's office. There is
nothing ordinary about this medical facility any more than there is anything
ordinary about the doctor who has created it . . . or the patients it

This is the new CFS Clinic in Kendall, Florida created by the world renown
ME/CFS expert, Dr. Nancy Klimas.

The patients, of course, are those of us who have ME/CFS and are used to
being ignored or marginalized by all too many physicians. We who are used to
being sent from "pillar to post" or, more accurately, from specialist to
specialist in search an opinion or treatment for one of our many symptoms .
. . usually to no avail.

At her new CFS Clinic, however, Dr Klimas has created something different .
. . something we're not used to . . . consideration and respect for our
condition, comprehensive examination and testing as well as personal
consultation with Dr. Klimas and treatment by her personally selected
doctors and staff . . . all in one facility.

Read more about the new facility at:

Daniel Moricoli



Community, Guidance & Practical Information for Those Affected by ME/CFS


Sunday, January 17, 2010

Pregnancy and ME/CFS

Permission to repost

M.E. patients that have been through pregnancy and childbirth are invited to
submit any information they have, any advice or cautions, that may be
helpful for those newly pregnant.

This information will be collated on a new 'Pregnancy and M.E.' page on the
HFME site later this year.


(There is almost no written material available on this topic, which is why
the focus is so much on anecdotal accounts, but if you know of any relevant
books or research please do let me know also.)

Best wishes,
Jodi Bassett
The Hummingbirds' Foundation
for Myalgic Encephalomyelitis:
* * *
When I was diagnosed, I was warned that pregnancy could result (at the very least) in 9 months on bed rest, and at worse, permanent disability, so it was not advisable.
Unfortunately, it appears that in the 22 years since then, no one has ever bothered to do a formal study.  Odd, that for a disease that affects mostly women, they did not investigate how it affects the most female of bodily functions!
I have heard anecdotal evidence going both ways: women who felt peppier during pregnancy (perhaps due to increased blood volume) and women whose health went rapidly downhill and took a year or more to recover from the pregnancy.
I'm looking forward to the results of Jodi's study so I have something to advise people other than "maybe, maybe not".  While, obviously, we would still be advising "you need to decide for yourself whether it's worth the risk", it would be helpful to know whether more women feel better or more women deteriorate so we can at least provide some statistics of which way it trends.

All of the Above?

I have added a new entry in my blog on the subject of the McClure denial of the Lombardi, et al, article in "Science" magazine on the new retrovirus XMRV.  Specifically, McClure denied finding any evidence whatsoever of XMRV in controls or patients. In contrast, the group from the Whittemore-Peterson Institute, Cleveland Clinic, and National Cancer Institute behind the Lombardi article found that 2/3 of patients diagnosed with "chronic fatigue syndrome" tested positive for the newly discovered retrovirus XMRV, as opposed to only 3.5% of controls.

The essay questions the focus on single causation for "CFS," and research programs that too quickly claim to have "disproved a cause" when applied to a small sample with dubious symptoms.  Bluntly said, sound research using even the CDC's Fukuda definition has generally involved clinicians who already had a way to diagnose the disease - and the way Simon Wessely diagnoses CFS at King's College, London, bears no resemblance whatsoever to the way Dan Peterson diagnoses it at Incline Village, Nevada.  Dan Peterson started out trying to understand a cluster outbreak of disease.  Simon Wessely started out with an ideology that seemed to perfectly fit a disease with a vague name, "Chronic Fatigue Syndrome," that was applied mainly to women.  The two models are incompatible.

If the process by which data is collected differs so strongly among groups of researchers, it is time to take an honest look at the patients in the data sets and how they were chosen.

Furthermore, it is well past time to adopt multivariate modeling in the study of The Disease.  Most patients who have one biomarker have another.  There is an identifiable, complex disease - perhaps diseases - but it cannot be modeled so simply as "X" causes "Y". 

Our understanding of AIDS as a complex, multi-factoral disease preceeded the finding that HIV predicted the emergence of AIDS.  In looking at the effects of XMRV - in evaluating the usefulness of XMRV - we will have to construct the complex disease that results from scratch, because the CDC has done so much to deny any and all characteristics that did not fit every single patient. 

Not everyone with AIDS has Karposi's Sarcoma.  But we could never have understood AIDS without first acknowledging the damage wrought by Karposi's Sarcoma.  We need the CDC - and its equivalent overseas - to go back and re-examine all the immune biomarkers, biophysical abnormalities, and viruses that have been summarily dismissed because they did not fit every single "CFS" patient.

The essay, entitled "Is there a case to be made for 'All of the above'?" can be found at:

Mary M Schweitzer, Ph.D.

More than test scores necessary to create a good doctor

I've often said, if only there were a way to weed out those who are only in it for the money!  Unfortunately, they know that the correct answer to that question is "I want to help people", so it's not as easy as just asking why they want to be a doctor.
Personality tests would help to make sure the focus is on helping patients, not on get rich quick.  Doctors who LISTEN are more important than anything!