Friday, May 27, 2011

Two Writing Jobs for PWCs and Caregivers

If you are interested in blogging, please tell us a little about your
family set-up, your caregiving role, and how this affects your life. If
you had a blog, what would it be about? What is the theme? What are some
of your typical highs and lows, challenges, joys? How does caring for your
parent change your family-dynamic, your relationships, your job?
Send this introduction along with 2 possible blog entries (about 300 words
Be sure to include your past writing experience, any clips you might have,
and a link to any current blogs you write.
Compensation: TBD
Reply to:

Unbiased, accurate information issues--not just the clinical facts--on a
wide range of health issues. Accurate, trusted, up-to-date health and
medical information, for consumers. We focus on problem-solving content to help
you make decisions during complicated, stressful times. We write in plain
English, using real-life examples. Query with resume and writing samples.
Email Features vary in length while columns are around 800
words. Email for detailed writers guidelines. None on website. Pays
$1-$1.50/word. 33% kill fee. Practical, service-oriented ideas are best to break in.

10 dumb things you do at the doc's office -

Thursday, May 26, 2011

When a Dedicated Doctor Is the Best Medicine

"They hadn't abandoned her out of indifference or lack of caring but, I believed, from frustration—not with her or her pain but rather their own impotence. Perhaps as a result of a psychological coping mechanism, as a group, doctors tend to ignore what they can't fix."

Why Me?

"society at large encourages this kind of self-blame.  In our health-obsessed, live-forever world, it's assumed that good health and long life are within everyone's control.  If you're sick, it's your own fault; your lifestyle, your genes, your fault.  This quickness to judge is fueled by a longing for power and safety.  Even more than we want to know "why" disease happens, we want to make sure it doesn't happen to us; and the more we can blame the victim for his own ills, the safer we are."
"Not everything that happens to us is a measure of our character or will; sometimes an event is just a matter of luck.  Tolerance, forgiveness, and acceptance are attitudes that help us face whatever chance throws our way." 
* * *
I've had doctors tell me that I have to be lying about my health habits -- impossible to be this sick if I live that healthy.  How about the concept that I'm not even sicker because I don't drink, smoke, do drugs, eat fast food, etc.?
I've had friends assert that the reason I can't find a good man is my fault.  They can't tell me what I'm doing wrong, just know that it must be something I'm doing wrong. 
Fortunately, when I first became "single again" I shared an office with a close male friend.  Due to proximity, he couldn't help but eavesdrop on phone calls, and was as puzzled as I was.  One day I had a blind date and had asked the guy to call as he left his office to make sure nothing "hit the fan" that would prevent me from getting to the date.  While I was on the phone, D gave me thumbs up.  When I hung up, he said "perfect!  Enthusiastic and encouraging, he surely can't wait to meet you."  Well, apparently he could -- my date never even said Hello to me.  I was back to the office to collect my stuff in 15 minutes.  D couldn't believe it. 
Since the last interaction I'd had with my date was so good, neither of us could figure out what the problem was ... other than perhaps the reality of what walked into the restaurant didn't match his hooker-fantasy dream girl.  I only wore a C cup and he was looking for a set of XXXs, perhaps?  But that's his hang-up, not something wrong with me and my approach.
Eventually I realized the problem: I don't want a man who's merely separated.  I want one who's fully divorced, and the good ones get snapped up before then.  The ones who are still unclaimed by the time the divorce is final are the ones no one else wants, either.  But that's not something that can be blamed on me.

Overcoming the Isolation of Illness | Psychology Today

having companionship in sickness, of all sorts in addition to the marital kind, can make all the difference when you're diagnosed with a medical illness. 

a 2007 study (ref. 2) showed that loneliness has an effect on the immune system: it increases genetic activity related to inflammation, a risk factor for heart disease and cancer; and it reduces antibody production and antiviral responses, protective against health risks.

Many with a medical illness seek comrades on similar journeys. Psychotherapy and support groups, internet chat rooms and blogs are all ways of connecting with one's illness companions.  Says one patient of his MS psychotherapy group: "they're my brethren". Despite the fact that his group is not heterogeneous (the degree of impairment ranges dramatically among members) he discovers they have a common ground — and a common enemy — uniting them.  The group provides health-enhancing strength and a safe space where members can speak their fears aloud: progression, burdening others, challenging relationships, role shifts, financial and career anxieties. They bolster each other with coping tools. When one member has a relapse, they rally around their comrade and find comfort in each other.  

Myths of Living With A Disability


Head Held High: Coping With Chronic Illness | Psychology Today


From Hollywood to Holyland: Chase Cheating - A Jewish Response

Pat said...

WPI has asked everyone to STOP contacting Chase regarding this. Chase contacted them and said that if it continues, it could hurt their chances at getting the money. So, if you were thinking about it, at least for now, DON'T!!

CFS Chronicles: Chase Commuity Giving Rules and Conduct

Chronic fatigue patients protest lack of funding

Wednesday, May 25, 2011

Keep the Faith....

Edited to add: Chase emailed me back and said they are investigating, and that they take this sort of thing "very seriously."

Chase Cheating Part II: Vote for Schools and promote anti-bullying | No Poster Girl

* * *

OK, so it looks like right now WPI is not in the big money, BUT after the investigation of whether these charities who came out of nowhere on the last day have been buying votes or using bots, some of the groups ahead of us may ("should") be disqualified, and we'll gain a few places.

Do not take the results posted at the close of voting tonight as gospel.  Check back in a few days after the investigation has been completed.



Use your life to serve the world

"Use your life to serve the world" – Oprah
ARE you?
Even from your bed, you can send a supportive e-mail, make a cheering phone call, pray ... you can do things for others even if you're not able to do much for yourself. 
I have a clear memory of being horizontal with a sinus headache and getting a phone call from Peter, who was horizontal with his own problems ... and having to beg him to stop making me laugh, because it hurt!  But just by picking up the phone, he made my day, because he cared enough to make that call.
I'll remind you that many of our activists are homebound.  But we've made a difference.
Go back to prior years of this blog; some of the posts were written by touch-typing while lying down in a dark room.  That's how sick I was, but I was still able to share information to help others. 
People ask me how I've been able to ward off depression when I've been this sick this long.  Part of it is because I've stayed productive.  Blogging may not earn a paycheck, but it's something that I can do from bed.
I had discovered back in 1987 already that I can crochet granny square afghans from muscle memory; I actually don't need any functioning brain cells to do it.  So, when I'm well enough, I buy yarn and bag it up in baby blanket quantities.  When I'm sick, I grab a bag and go around and around ... when I run out of yarn, it's the right size.  No thought required.  When I have a dozen or so, I take them to the battered women's shelter, where I'm made to feel wonderful about my donation.
When I'm mentally alert but physically incapacitated, I get more hours of enjoyment for my dollar with counted cross-stitch.  I've made some inspirational pieces and donated them to medical facilities, where, again, I'm made to feel special because I made a donation, even if it was a project picked up for 50¢ at a yard sale in a $1 thrift store frame.
What can YOU do to be productive and serve the world?
At the very least, as the previous post suggests, e-mail Oprah and tell her the world needs to hear about CFS, ME, fibromyalgia, XMRV, HGRAD....

Contact Oprah

She's ending her broadcast TV show today, but now is moving to her own OWN Network, where she'll have thousands of hours a year to fill, not just a couple hundred.
Let's get her to do some informational shows about CFS, fibromyalgia, XMRV, etc.

Tuesday, May 24, 2011

David S Bell, MD | Lyndonville News, Vol. 7 No. 2

How to Soothe Acute Arthritis Pain and Save Your Joints

Sanofi’s Zerhouni On Translational Research: No Simple Solution

Zerhouni says that such "bench to bedside" research is more difficult than he thought.

When he arrived at Sanofi, "I thought the solution would be simple," Zerhouni said at a recent R&D press event ...

While at the NIH, Zerhouni witnessed a lot of progress in basic science that had implications for human health. But those findings weren't being translated because clinician-scientists weren't receiving the right training, he said.

At pharma companies, most R&D scientists are too isolated — they talk primarily to those within their own company — and the experimental therapies that companies are developing are created without enough communication with the doctors who actually treat patients.

There needs to be a "re-do" in pharma R&D, Zerhouni said.


New ADA Rules Broaden Definition of 'Disability' - Careers Articles

Monday, May 23, 2011

Community: a note from Annette Whittemore


Many people have asked why I authorized a posting asking supporters of the WPI to vote for the CAA in this round of the Chase Community Giving Campaign.


It is critical that we create "one community" around a shared mission to find scientific answers to neuro-immune diseases that for too long have been neglected.  As the retroviral discovery by the WPI and many others continues to bring significant focus on ME, CFS and neuro-immune disease there still exists great misunderstanding among some scientists and physicians.   Many others still do not recognize the importance of the biological underpinnings of this disease or the severe impact it has on the lives of its victims.  Therefore, we must come together to end the scientific ignorance that stands in the way of treatments and a cure.


Although I am disappointed in the CAA's lack of support of retroviral research, I hope it will change its research priorities based on continuing advances in this field.  In asking for your votes in this "Community Campaign", I was extending my hand once more with the sincere hope that the CAA will support this significant biological research.

* * *

Remember, folks, if TWO of the 25 winners have the same mission, the media will notice.  Regardless of whether you agree with CAA's politics, this is a chance to get ME/CFS in the news, and that should be important to all of us.

Sunday, May 22, 2011

Sleep Disorders and Fibromyalgia

Note: Studies looking at the role of cytokines in sleep regulation and
physiological function suggest this is an area that should also be
included in any discussion of disordered sleep in fibromyalgia and
CFS. The effectiveness of CBT or sleep hygiene are a function of
whether they address the reason for the sleep dysfunction. The
abstract does not note what percentage of fibromyalgia patients find
these therapies effective or if they are only partially effecting
which might be the case if they address part of the problem, but do
not address the primary source of sleep dysfunction.

Further information on sodium oxybate can be found here:

Curr Pain Headache Rep. 2011 May 20. [Epub ahead of print]  A reminder
that non-specific interventions such as CBT don't tell us

Sleep Disorders and Fibromyalgia.
Roizenblatt S, Neto NS, Tufik S.
Departamento de Psicobiologia, Universidade Federal de São Paulo,
Avenida Angélica 1996, Andar 1, São Paulo, 01228-200, Brazil,

Disordered sleep is such a prominent symptom in fibromyalgia that the
American College of Rheumatology included symptoms such as waking
unrefreshed, fatigue, tiredness, and insomnia in the 2010 diagnostic
criteria for fibromyalgia.

Even though sleep recording is not part of the routine evaluation,
polysomnography may disclose primary sleep disorders in patients with
fibromyalgia, including obstructive sleep apnea and restless leg
In addition, genetic background and environmental susceptibility link
fibromyalgia and further sleep disorders. Among nonpharmacological
treatment proposed for sleep disturbance in fibromyalgia, positive
results have been obtained with sleep hygiene and cognitive-behavioral

The effect of exercise is contradictory, but overweight or obese
patients with fibromyalgia should be encouraged to lose weight.

Regarding the approved antidepressants, amitriptyline proved to be
superior to duloxetine and milnacipran for sleep disturbances.

New perspectives remain on the narcolepsy drug sodium oxybate, which
recently was approved for sleep management in fibromyalgia.


Note: Always ask your doctor before adopting any new regime as
supplements are drugs and as such should be evaluated in terms of
other drugs that are being taken.

Ask Dr. H: Using D-Ribose for fibromyalgia

By Mitchell Hecht
Medical Columnist

Question: What is your opinion on taking D-Ribose for fibromyalgia?

Answer: D-Ribose is one of those supplements that have garnered a lot
of attention recently. D-Ribose is a 5-carbon sugar (unlike 6-carbon
glucose sugar) directly involved in the production of "ATP," the fuel
that every cell in the body uses for its energy production. D-Ribose
doesn't raise blood sugar; rather it's directly converted to ATP. It
can even lower blood sugar a bit.

Supporters of D-Ribose claim it decreases pain, improves mental
clarity, increases energy, improves stamina, creates an improved sense
of well-being, and strengthens heart performance. Uses for D-Ribose
range from folks with chronic fatigue syndrome or fibromyalgia to
athletes looking to improve their exercise endurance. It may also be
helpful, in theory, to those who experience muscle aches and pains as
a side effect of cholesterol-lowering statin drugs.

While there are many anecdotal claims about D-Ribose benefits, there
isn't much in the way of double-blinded placebo-controlled research
out there that tests it against a dummy pill or powder. I have not yet
recommended it to my patients, but it does seem safe enough to
recommend to select patients who have not responded to other
treatments for chronic fatigue syndrome, fibromyalgia pain, or
cholesterol-medicine weakness and pain. The recommended dosage is 5
grams (powder dissolved in liquid) two to three times daily with
meals. Two reputable brands I've found are Corvalen and Life Extension

Chase Community Giving

  The Whittemore Peterson Institute for Neuro-Immune Disease (WPI) was 
created to answer a critical need for discovery and medical treatments 
for those with serious illnesses that impact the body and the brain. 
These often debilitating and life-long diseases, including M.E., CFS, 
fibromyalgia, post Lyme disease, GWI and autism, have too few medical 
solutions. WPI continues to make significant strides through the work 
of our innovative research program. Translating novel research into 
effective patient treatments for millions around the world will begin 
with the opening of our 10,000 sq. ft. medical facility. Here we can 
engage in revealing clinical trials and provide onsite care to those 
who are unable to afford care. We require funding for initial expenses 
and to establish a patient fund. WPI's commitment to discovery has 
already inspired much hope worldwide. Now it is time to put hope into 
action by offering meaningful patient care to these underserved 

Please take a moment to vote and ask your friends and family !!!   
Chase Community Giving is giving us a chance to win 525,000.00 for the 
Whittemore Peterson Institute
Here is a link and thank you for your support .  The second round of 
voting begins May 18 th at 9 pm pacific and ends May 26 th so mark 
your calendars!!!

For this one, I'm not going to be splitting my vote.  One vote, one WPI.

Jean Harrison

There's something I have to tell you - Chicago Tribune

10 Tips from 10 Years Sick | Psychology Today

9. We're fortunate to live in the Internet Age.

I can't imagine how much more difficult this illness would be if I couldn't connect with others on the web who are similarly sick. Through blogs and Facebook and my website, I've met people from all over the world.

If you live alone and are housebound, cyberspace friends may be your only source of support. It's so comforting to hear from another person with chronic illness and be able to say, "That's exactly how I feel!" When I think of how isolated people were who were sick just a few decades ago, I feel fortunate to be sick in the Internet Age.

* * *
This is one of the best things for me -- when I first got sick in 1987, there was no e-mail.  The only way for me to work at home was to go out and collect the work and go out the next day to return it.
But I didn't become disabled in 1987 -- I became disabled in 2000.  Work arrives by e-mail, work is returned by e-mail.  A few months ago, I spoke by phone for the very first time with someone I'd been working for for nearly a decade.  We knew each other's background, hobbies, interests, way of expressing things ... but had never heard each other's voice.  Thanks to Facebook, I'm finally able to put faces with names for some clients.
Had I been housebound in 1987, I would've gone stir-crazy; I'm a social creature by nature.  Now, there are times I shut down the computer and walk away because I've been socially over-stimulated and need to be alone for a while ... and I hadn't even gotten out of bed yet!