Saturday, May 28, 2011
Friday, May 27, 2011
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.
Reply to: KatieHerrick@yahoo.com
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wide range of health issues. Accurate, trusted, up-to-date health and
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you make decisions during complicated, stressful times. We write in plain
English, using real-life examples. Query with resume and writing samples.
Email email@example.com 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.
Thursday, May 26, 2011
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.
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!!
Wednesday, May 25, 2011
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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" – Oprah
Tuesday, May 24, 2011
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.
Monday, May 23, 2011
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.
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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
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.
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
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
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
For this one, I'm not going to be splitting my vote. One vote, one WPI.
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.