Monday, January 12, 2015

PR Firm Will Spread the Word About ME

ME Advocacy, which patient advocate Mary Ann Kindel launched last spring, has raised more than $6,300 so far to hire public-relations agency Crowds on Demand to get the word out about ME. To meet the February goal of another $3,700, patients can donate by midnight January 21st. ME Advocacy’s plan is to raise $26,400 over the next six months, which will cover the PR firm’s costs of $4,400 a month.

With this money, Crowds on Demand will: organize and hire protesters at events; place articles in the media, from print and online to radio and TV; meet with policymakers in Congress to find champions for ME; help with fundraising.

Already, the PR firm has lined up interviews with several smaller media outlets and written a 60-second script for a radio commercial to be aired on Midwest health podcasts. 

Kindel, 51, a graphic and website designer from Cincinnati, Ohio, has been ill since 2000 with severe ME that’s kept her largely housebound.  She decided to start her advocacy organization because of the P2P and the IOM.  “It’s the latest iteration of government’s malfeasance, and most ME patients aren’t healthy enough to protest it themselves,” Kindel explains. “I want to shake things up from a different angle, to try what hasn’t been tried yet.  I believe we need a consistent effort by professionals to get the word out what ME really is, why it needs to be officially recognized, why we need an accurate ME definition, and why we need vastly increased federal funding for research, to be commensurate with diseases like MS.”

To donate to ME Advocacy to hire Crowds on Demand, click here.

Here is a letter from Adam Swart, CEO of Crowds on Demand, detailing what the agency will do for ME patients:  
With a strong Public Relations campaign, the fight to get ME recognized is an issue that we believe will resonate well with the American public.
Complete lack of visibility is the major problem the movement is experiencing. Most Americans do not know about these changing definitions because the issue has not been covered by major media outlets or championed by any high profile policy maker. To be blunt, most Americans don’t know the reality of ME! 
Hiring the innovative PR firm, Crowds on Demand, provides the opportunity to bring concerns about the NIH/CDC redefinitions to the public and get the issue the attention it deserves. The firm is known for an "outside the box" approach that has successfully assisted people and organizations in getting on the map. Unlike many firms, we do more than contact media outlets, we coordinate campaigns from the ground up involving lobbying, demonstrations and media relations. 
Crowds on Demand will contact media, arrange for interviews on high profile shows (particularly morning shows), organize demonstrations and recruit policy makers to join the fight. Moreover, we will assist in the fundraising process by helping to make strategic partnerships with influential organizations and donors. 
We have agreed to work for a heavily discounted rate of $4400 per month including all of these services because we believe in the cause (normally we would charge approximately $10,000 per month for such a campaign). Furthermore, we promise results within 6 months and promise a 50 percent refund if the organization is not satisfied. 
A PR campaign with Crowds on Demand will get the cause on the radar and help the organization raise substantial funds from a donor network. We have excelled in the past working to bring attention to non-profits. For example, Crowds on Demand has worked with a relatively unknown charity in Los Angeles that worked on homeless mental health issues. It was originally unable to fundraise much or get attention. Through its campaign with us, they substantially increased fundraising and got attention in the media. 
We want to bring our success to fighting the HHS’s ludicrous redefinition campaigns and getting ME recognized.

Monday, November 17, 2014


Bought is a terrific new documentary about the health dangers of vaccines, prescription drugs and genetically modified foods. The film is hosted by outspoken Evanston, Illinois, physician Toni Bark, who’s treated in her own medical practice children who’ve been injured by vaccines. Some ME patients have had their own disease brought on by vaccination, particularly hepatitis B.

One of the many frightening things that I learned from the film is that some GMO foods have, among other alarming facts, the ability to destroy gut bacteria. Since most of the immune system is in the gut, disruption of gut flora may have problematic health consequences. (Basically, in a twist on the 1970s commercial for Chiffon margarine, it's not nice to fool Mother Nature.)

As the title of the film makes crystal clear, money, greed, corruption and sociopathy rule in big pharma, whereas people’s health is an afterthought—if that. And since CDC essentially works for pharma, and physicians trust CDC to give them accurate information, physicians and the public are comforted, the physicians into believing they're doing the right thing, and the public into believing that it's safe. But the film argues that in fact people, particularly children, have become the canaries in the coal mine.  

The good news is that people are starting to wake up to the fact that they’ve got to fight for their own health and the health of their children. Bought documents how advocates in Connecticut fought for GMO labeling on food—GMO manufacturers have been campaigning vigorously against it—and in 2013, the state became the first to pass a bill to require companies to label products that contain GMOs.

The film is available to stream for $4.95 until November 21 at You can watch the trailer here:

Monday, November 3, 2014

Medical Marijuana

Tomorrow is Election Day here in Pennsylvania, and I’ll be doing my part to oust current Republican Pennsylvania Governor Tom Corbett out of office for, among other things, his not-over-my-dead-body’s approach to the legalization of medical marijuana.  After pressure was applied on Corbett last spring—80 percent of Pennsylvanians support legalized medical marijuana—he grudgingly partially reversed his opinion on the subject—but only for severe childhood epilepsy.

A friend of mine’s 16-year-old is daughter is plagued with severe epilepsy—and anticonvulsant meds and the Johns Hopkins high-fat ketogenic diet haven’t worked: The young woman has tried multiple drugs and multiple combinations, and still she experiences multiple seizures daily.  Whether pot can reduce her seizures is anybody’s guess, but she should have the right to try it now and not wait for the grindingly slow wheels of Pennsylvania politics to make it possible.  How many more seizures will she have before medical marijuana is approved here?  

The marijuana that’s effective for seizures has little to no THC, the chemical that makes you high. Instead, marijuana with anti-seizure activity is high in another chemical called CBD, which doesn’t make you high but can control or eliminate seizures. Marijuana high in CBD can be taken orally as an oil. 

CBD is also great at reducing pain and helping sleep, so it’s not surprising that CBD also helps fibromyalgia, ME and Lyme patients.  Several ME patients have reported that marijuana helps diminish nerve, muscle and joint pain and improves sleep. Shouldn’t fibro, Lyme and ME patients, and other patient with other diseases have the right to medical marijuana as well, Governor Corbett?

The good news is he probably won’t be governor for long. Democratic candidate Tom Wolf, still leading in the polls, supports medical marijuana.  In a recent debate with Corbett, Wolf said:  “We need to legalize medical marijuana immediately. We need to work quickly on that. We need to decriminalize small amounts of marijuana. We put too many people in prison. We break up families and destroy too many lives.”

Amen to that. 

Tuesday, August 26, 2014

Autism Study Redux

In a TV interview, Dr. Brian Hooker explains other problematic autism findings CDC tried to bury, according to CDC whistleblower Dr. William Thompson, and that includes thimerosal, at about 13:38.  He also mentions class-action suits.