Saturday, September 18, 2010

HIV Origins in Monkeys Traced Back at Least 32,000 Years

"If it took thousands of years for SIV to evolve into a primarily nonlethal state, it would likely take a very long time for HIV to naturally follow the same trajectory," the Tulane University research team said in a statement.
* * *
Hmmmmmmmmmm.  Perhaps CFS/XMRV/HGRV is older than HIV, which is why it isn't as lethal?

Vitamin D and the Marshall Protocol -- WARNING!!!

*permission to repost*

Zoltan Rona M.D. recently released a book called: Vitamin D: The Sunshine

This is an excerpt of my review of the book, reproduced for the benefit of
anyone supporting and promoting the use of the Marshall Protocol for M.E.
(or any disease):

'The best part of this book, for me, was his two page section talking about
the unscientific nature of the 'Marshall Protocol.'

Zoltan Rona M.D. writes, 'I have witnessed a lot of crazy treatments over the past 30 years, but none are as abusive as the Marshall Protocol. This protocol is not only illogical but also downright dangerous. At best, it can be labelled as a pretence of scientific thought.'

Rona goes on to talk about the fact that 'Dr' Marshall is in fact NOT a
medical doctor, but is an electrical engineer! He explains that the
protocol, which promotes attaining very, very low vitamin D levels and
taking antibiotic drugs long-term, is 'damaging to one's health and can lead to death.'

He advises anyone that is currently following this dangerous and illogical
protocol to 'get off it immediately.'

The Marshall Protocol has given so many very ill patients false hope and
left them even sicker than when they began it, and also risked their lives.
So three cheers to Rona for including some serious warnings about it in his
book. I hope so much they will be heeded by those following the protocol and
those aggressively promoting it to others.This pseudo-scientific 'treatment'
has caused ENOUGH harm.'

Read the full review here:

Read more about vitamin D and M.E., here:

Read more warnings from HFME (and others) about the Marshall Protocol in the
'Treating M.E.' paper:

Best wishes everyone,
Jodi Bassett
The Hummingbirds' Foundation
for Myalgic Encephalomyelitis:
We estimate that vitamin D deficiency is the most common medical condition
in the world. Dr Michael F. Holick, Vitamin D expert.

Vitamin D is cholecalciferol, a hormone. Deficiencies of hormones can have catastrophic consequences. Dr William Davis, cardiologist.

Vitamin D deficiency is an unrecognized, emerging cardiovascular risk
factor, which should be screened for and treated. Vitamin D is easy to
assess, and supplementation is simple, safe, and inexpensive. James H.
O'Keefe MD, cardiologist and Director of Preventive Cardiology, Mid America
Heart Institute, Kansas City, Missouri.
* * *
And therein lies the problem with many CFS "treatments" -- they're conceived by people who don't know what they're doing and can be dangerous, if not fatal.
There's some concern that the "Lightning Process" being offered in the UK is little more than hypnosis.  Convince the patient she's not really sick, and ... well, we all know the consequences of ignoring our body's signals and overdoing.
I once did it intentionally.  A doctor had been urging me to exercise my way to health, which I knew was bad advice, but I also knew that he was not going to take my word for it, that I was going to have to prove it in the here and now, not "when I tried that 15 years ago".  So I waited till I felt half-decent, and followed to the letter doctor's orders to take a walk every day, no matter how bad I felt.  Every day I felt worse.  By the end of the first week, I couldn't even get out of bed.  And documented that instead of making me feel better, as he assured me it would, each day of overdoing cost me even more physically than the day before.
Because the fastest, easiest, and cheapest way of differentiating between depression and CFS is to send the patient out to exercise.  A depressive will return energized, enough to start cleaning the house; the PWC will return exhausted and collapse into bed. 
I saw this in my own home.  A friend who had alternate Fridays off would take my depressed spouse out for a long walk or a bike ride or something, and Spouse would return chipper and ready to do something productive.  It was suggested that I take Spouse out for a long walk every night after dinner.  Ha!  By the time I had walked the mile home from the bus stop after work, it was all I could do to make it to a chair.  But without a companion, Spouse wouldn't budge off the couch where he'd spent the day watching TV.  (And, no, he saw no reason to walk to the bus stop to walk home with me; I was a big girl, and I didn't need him to safely walk me home.  He would not get off the couch unless someone physically dragged him, and if I was a mile away at the bus stop, I wasn't at home to pull him up and out the door.)
I could go on at great length describing the differences between what he has (depression) and what I have (CFS), all those things that the average PCP doesn't know about, and therefore conflates the two diseases.  Anyone who's seen them both up close knows they're not the same.  Everyone else hears "fatigue" and assumes they are the same, thus prescribes the same treatments for CFS as for depression, which are detrimental to CFS patients who absolutely positively should not do aerobic exercise, nor "push through the pain".

Dr. Judy published in AIDS Reviews


Friday, September 17, 2010

CFSAC -- October 12-14, 2010

The next CFSAC meeting will take place on October 13-14, 2010.  A "Science Day" on October 12 will precede the meeting.  More information is located at the CFSAC website located at  
* * *
With everything else going on with the WPI Grand Opening, I spaced alerting my readers that written testimony is due 30 minutes from now.
But you can start working on your written testimony for the next meeting.  They say you have a five-page limit.
And those of you who live nearby can attend meetings in person.  You can ask for a time slot to offer a few minutes of live testimony about how CFS affects you, what the Advisory Committee should recommend, etc.
I wrote on behalf of the members of the CFS Facts support group and the CFS Facts Facebook page
Facebook | CFS Facts so you needn't feel guilty if you didn't get your testimony in this time. 
I started with a reminder that it's almost exactly a year since the XMRV article in Science magazine, but absolutely nothing has changed for patients -- we're still being verbally abused/dismissed/untreated because the research findings don't get down to the front lines.

Death By Chocolate! | CFS Untied


Thursday, September 16, 2010

Thursday’s Workshop 2 Parts [1] Invisible Disabilites [2] The Joy of Friends


The first thing you'll learn when stricken with a chronic illness is who your REAL friends are. 
I have a card next to the bed inscribed "we'll always be true friends!" from someone who has not once done a single thing to help me, only asks how I am if I contact her first, etc.  We'd been friends for about 10 years when I got sick, and while she's right that I'll always have a soft spot in my heart for her, she's wrong in her definition of "true friends".
My "true friends" are the ones I can ping when I'm at my worst, who'll listen to the symptom list du jour, and even if there's nothing else they can do, offer a "there, there" or an "I'm here".  The ones who'll run to the store when I need OJ and Vitamin C for a cold, or Gatorade for digestive distress, or a craving for some food I don't normally keep in the house.  The ones who'll answer the phone at 3 AM with "honey, what's wrong?" rather than "do you know what #$&%!! time it is?"
Don't beat yourself up when all your friends flee -- it's not your fault, it's theirs.  They're too self-centered to "do unto others".  They'll get theirs in the end.  You need to devote all your energy to getting yourself well, not to beating yourself up over other people's actions.

Medical Miracles

"I grew up in India, and doctors there were looked up to as being next to God, and they knew everything and could cure you," Kulkarni says. "What I found out is that even though I like my doctors, I don't have to take every recommendation they give me. I can do my own research."

Srinivasan, the physician who encouraged Kulkarni not to give up, says sometimes doctors don't know about new, cutting-edge treatments being used by other physicians.

"Some doctors are more out-of-date or up-to-date than others," says Srinivasan, an associate professor of medicine at UC-Davis Medical Center who does research on shared decision-making between doctors and patients.

"I get a lot of good ideas from patients," he says. "One of the things we have to do as physicians is to listen to our patients."

* * *

That last sentence has to be taught in every medical school.  I knew what was wrong with me, because I'd been diagnosed by a specialist, and I knew what could be done for it.  The doctors I dealt with pretended to listen, then wrote down what they wanted to write, and changed my diagnosis to what they wanted to treat.  I knew more about my body and my illness than any of the doctors I dealt with at first, yet none of them were willing to listen to me.  That would have made all the difference.

Wednesday, September 15, 2010

New URL and new post for CFS Untied

Dear blog followers,
My blog had a major hiccup and has had to be relocated.  Please visit me at

My written testimony to the October CFSAC meeting has been posted at:

Sorry for the trouble, and thanks for following!

Tuesday, September 14, 2010

Our time is Now!

"A Time to Every Purpose Under the Heaven"

Ecclesiates says there is a "A time to every purpose under the heaven". I
suggest that our time is now.

ME/CFS has been ignored and kicked to the side of the road for decades. 
Twenty-five years later - long after it has been shown to afflict at  least a million people in the US and inflict billions and billions of  economic losses annually in the US - it still receives amongst the  lowest amount of funding of any disorder.  Chronic illnesses  that  effect fewer people and cause less damage get hundreds of millions  of  dollars a year in funding while we get a few million a year...droppings  from the NIH's table.

But now XMRV and the WPI have handed us a unique opportunity that could allow us
to make a huge difference in how this disease is funded. But this window of
opportunity may not be open in 4 months.....NOW is the time to act.

Find out why and how here:

Herdisms Blog | The best of advocacy comes from collaboration



Webinar Schedule

September 14, 2010

2010 Webinar Series Update

CFS & The Viral Connection
Guest Speaker: Dr. Anthony Komaroff
Thursday, September 16, 2010
12:30 PM Eastern Daylight Time

Because some cases of chronic fatigue syndrome (CFS) begin with a flu-like infection, several viruses and other infectious agents have been studied as possible causes of CFS. Although none of them have yet been proven to cause CFS, several have been associated with CFS, and the development of CFS following infection with several infectious agents has been well documented.

The October 2009 publication of the paper in Science linking the gammaretrovirus XMRV to CFS is the subject of intense scientific inquiry and debate. The August 2010 paper published in the Proceedings of the National Academy of Sciences associates a related, but different, group of gammaretroviruses with CFS. Yet, most doctors and researchers who think that infectious agents can trigger CFS believe it is unlikely that a single infectious agent will explain all cases.

Join CFS researcher and clinician Dr. Anthony Komaroff of Harvard Medical School and Brigham and Women's Hospital for an exploration of some of the infectious agents and illnesses connected to CFS, including Epstein-Barr Virus (EBV), Human Herpesvirus (HHV)-6, Q-fever, Ross River virus, Lyme Disease, Parvovirus, Borna disease virus, Influenza A (H1N1) virus (swine flu), retroviruses, enteroviruses and mycoplasmas.


Our webinar series continues on Tuesday, Oct. 5 Scientific Director Dr. Suzanne Vernon will lead a discussion with researchers Gordon Broderick, Kathy Light and Dikoma Shungu about how the Association's research program can help secure additional funding and accelerate uncovering promising discoveries for the field. Register now for Expanding Research: Building On Your Investment.

Tuesday, Oct. 21, join internist Dr. Morris Papernik of ProHealth Physicians Group and Hartford Hospital in Hartford, Conn., for a discussion of common comorbid conditions in CFS -- illnesses or disorders that are present in addition to a primary disease or disorder.

On Thurs., Nov. 11, join Dr. Lucinda Bateman, founder of The Fatigue Consultation Clinic in Salt Lake City to learn some strategies to enhance communication with your medical team and avoid leaving the doctor's office feeling frustrated and depressed. "DOC TALK: Communicating with your health care team about CFS."


We've posted the recording, ( slides ( and  written material ( for our most recent webinar on "Managing Orthostatic Intolerance," by Dr. Peter Rowe. You can find links to all the past webinar programs at

Monday, September 13, 2010

Invisible Illness Awareness Week -- Blogging for the Cause

It's Invisible Illness Awareness Week!  Half of Americans live with a chronic health condition and 96% of them are "invisible" -- just because we aren't in wheelchairs does not mean we are not legally entitled to park in handicapped spaces.  Some of us are on our own two feet through sheer willpower; a wheelchair would be less tiring, but stubbornness keeps us upright.
More than once, I've told friends that I am volunteering to push their wheelchair not because they need the help, but because I need the wheelchair to lean on for support.  The blind leading the blind, the halt carrying the lame.  But because I'm the one who's upright, it's assumed that I'm the healthy one, and people don't understand why I can't leave my friend to go run the errand we're asking them to run.
The friend who has been my guide through the world of living with chronic illness keeps a box of brochures in her car.  Anyone who comments on "a healthy young woman" parking in a crip space gets an educational lecture about her condition (and invisible disabilities in general).  She may look healthy when she gets out of the car, but by the time she gets back after even just a short shopping trip she's dragging.
I may look healthy, but when I get back from the grocery, only the cold stuff gets put away.  I have to rest for a while before I deal with the non-perishables.  But since that happens in my own house, no one outside is aware of just how limited I am. 

Jenni's comments on the WPI Fundraiser

Saving me the trouble of describing it all.
At first, I thought it was odd to make patients with mobility issues deal with a buffet line, but as I approached, I realized it was a good idea.  Annette had them label stuff as "gluten free", and that's when it dawned on me that a buffet allowed us to load up on what we can eat and avoid what we can't, instead of a "one size fits all" dinner plate.  The only thing I was concerned about was whether those were real bacon bits or soy, and when I heard they were real, I sprinkled with abandon.
It was good to put faces and voices with names I've known.  Thanks to Angel Mac for making it possible for me to attend!  And she'll thank me for "riding shotgun" so that she could safely make the long drive.

Sunday, September 12, 2010

Blog for the Cause

I blog for the cause EVERY week!

Are You Blogging for the Cause? Post Your Blog Here!


How The Chronically Ill Form Relationships Online


To all my online relationships, with love!
When it's time for next year's I Hope You Dance fundraiser ... I hope you'll be able to dance with us.
(A good time was had by all.  Annette Whittemore saw to it that the food on the buffet was labelled when it was gluten-free, to facilitate patients deciding what was and wasn't safe to eat.  Since it wasn't California, I figured I didn't have to worry about hidden soy.)