Friday, September 13, 2013

OFFICIAL obituary for Tom Hennessy

Thomas ("Tom") Hennessy, Jr. of Boca Raton, FL, died Mon., Sep. 9, 2013
after a long struggle with multiple illnesses. Tom was born in Scranton, PA
and lived with his family in towns across the Northeast through the age of
14 when the family moved to Japan. Tom graduated from St. Mary's
International School in Tokyo, Japan and Fairfield University in CT. Tom
enjoyed successful careers in sales and the service industry, and after he
became ill, he was a tireless advocate for those suffering from disease,
disability and misfortune. He was a gifted saxophone player, and loved jazz,
wine, and gourmet food. He was also fond of fast cars - driving, racing,
selling, and caring for them. He was the beloved son of Kate, and the late
Thomas M. Hennessy, sister Mary, brother Charlie and sister-in-law Nancy
Cowdin, brother Kevin, brother George, sister-in-law Rebecca, nephews Sean
and Ryan, sister Ellen, brother Robert, sister-in-law Katie, nephews Luke
and Mason, and niece Maggie. Tom will be remembered for his wit,
determination, dedication to friends, his love of the city of San Francisco,
and his advocacy. The funeral mass will be celebrated Thur., Sep. 19, 2013
at Our Lady of Mercy Catholic Church in Potomac, MD, at 11 a.m. The family
will welcome guests at 10 a.m., prior to the mass. Internment at Gate of
Heaven Cemetery in Silver Spring, MD, followed by a reception at Our Lady of
Mercy. In lieu of flowers, memorial contributions can be made to the
Massachusetts CFIDS/ME & FM Association at or to
the National Alliance for Myalgic Encephalomyelitis at
- See more at:

Thursday, September 12, 2013

Annette Whittemore turns focus back to medical research

Annette Whittemore turns focus back to medical research
Gala for institute returns Friday
Sep. 8, 2013
Written by Siobhan McAndrew

I Hope You Dance benefit gala

WHEN: 6 p.m. Friday
WHERE: Atlantis Hotel Casino Resort Spa
HONOREES: Bob and Jan Davidson of the Davidson Academy of Nevada and Pat Fero, advocate
COST: $250 a seat, $4,000 a table.
DETAILS: 775-682-8250 or

Annette Whittemore hopes her last name will someday be associated with research, discoveries and treatments.

But for the past two years, Whittemore, CEO, president and founder of the Whittemore Peterson Institute for Neuro-Immune Disease, has faced national headlines linking her name to her husband's highly publicized federal trial for campaign finance violations, among other legal troubles.

But things are moving forward, Whittemore said in an interview Thursday. Her institute, a nonprofit, will hold its eighth benefit gala on Friday night.

"I'm persistent," Whittemore said from the institute's offices and lab inside the Center for Molecular Medicine at the University of Nevada, Reno.

"We want people to know we are moving right along with research. We aren't going to stop until we find answers."

The gala, once a must-attend stop on the local social calendar, returns after it was canceled last year.

This year, the event will host about 100 fewer people than in the past, Whittemore said, but people are still making donations. She is expecting 250 to 300 people to attend the $4,000-a-table dinner at the Atlantis Casino Resort Spa.

Whittemore said it's time to focus on the good research happening at the institute — not past legal problems or questions about a discredited study by a former researcher at the institute.

"You can hear all of these things, and read the stories about my husband, and I know who he is, and so do the people who are close to us," she said.

In May, Harvey Whittemore was found guilty of three felony counts linked to illegal campaign contributions to U.S. Senate Majority Leader Harry Reid, D-Nev. The former lobbyist and Nevada political power broker will be sentenced on Sept. 23 and could face a maximum of five years in prison and $750,000 in fines.

In January, the couple was accused of embezzling millions of dollars from partners in Harvey Whittemore's real estate businesses that developed Wingfield Springs and Red Hawk golf courses in Spanish Springs.

The lawsuit alleged the Whittemores used a company aircraft for personal flights and Wingfield Springs for personal favors that benefited the Whittemore Peterson Institute.

"We settled those (lawsuits) and are happy with the outcomes," Annette Whittemore said.

She's said it's been a tough time for her family, including for daughter Andrea Whittemore-Goad.

Understanding a disease

Whittemore-Goad, 35, was diagnosed with chronic fatigue syndrome at 12. The once active little girl who played piano and insisted friends exercise for fun was debilitated by what felt like a horrible flu and headaches that wouldn't go away.

Frustrated by doctors who diagnosed a slew of illnesses, including one who said the 12-year-old had a mental illness instead of a medical problem, the family sought out specialists from around the country. Finally, a diagnosis led the family to the realization that little was known or being done about a disease that affects 17 million people worldwide.

Symptoms of the disease can include exhaustion; muscle and joint pain; headaches; cognitive difficulties; and digestive, cardiac and respiratory problems that sometimes lead to death.

"There has been a lot of misinformation out there about my family," Whittemore-Goad said. "But we have to keep doing the work we are doing because people don't understand this disease and how debilitating it is."

Whittemore-Goad, the second oldest of the family's five children, said her parents have shown grace through difficulty. She said her mother and father are her inspirations and have had to suffer beyond what the headlines say, having to watch a child suffer.

"I think of them as my parents who would have taken me anywhere to get better, but we realized there was nowhere for us to go," she said.

For years, Whittemore-Goad wasn't able to drive or do simple things such as go to the grocery store.

Things improved when Dr. Daniel Peterson of Incline Village, for whom the institute is also named, put her on a drug that he was finding successful with patients. It later stopped being effective, and Whittemore-Goad relapsed and her symptoms got worse.

Peterson cut ties with the institute in 2010.

The work continues

The institute received international acclaim in 2009 after it released research that appeared to be a major breakthrough linking chronic fatigue syndrome to a retrovirus.

Ultimately, the research was discredited and one of the institute's researchers, Judy Mikovits, was fired and later arrested for taking proprietary information from the institute. Criminal charges against her were later dropped.

While the past two years has brought hate mail, Annette Whittemore said she will not waver in her commitment to helping patients who suffer from a disease that has a high suicide rate.

"It all goes away when you get a thank you note from someone who we are giving hope," she said.

Whittemore said that since the institute started in 2005 as part of a joint venture with the medical school, other research centers have followed suit.

Whittemore-Goad said the silver lining to her family's name being in the headlines is the attention it brings to research about chronic fatigue syndrome.

Research at the institute is moving forward with a team of five people. Medical students at UNR also work on research.

At Friday's gala, the institute will announce that Belgium physician Kenny De Meirleir, who works with patients with chronic fatigue syndrome, will open a clinic at the institute and start seeing patients in the United States for the first time, Whittemore said.

He has clinics in other countries and will be in Reno about every six weeks.

"It's amazing that we will have someone like that here to meet with patients," Whittemore-Goad said. "I have wanted to go to him since I was 14 but was never well enough to travel that far."

Wednesday, September 11, 2013

Cinder Bridge: RIP Tom Hennessy

Cinder's tribute to Tom. Better written than I could manage; I'm still in shock.

Thomas Michael Hennessy, Jr. Obituary, Boca Raton, FL

Tom was a good friend and an excellent activist.  The cause will miss him greatly.

Chronic Fatigue Syndrome Making Inroads at Top Medical School

It couldn't have easy establishing an ME/CFS program at one of the most highly rated medical schools in the country–they're usually the last to fall, so to speak, with a disease like ME/CFS, but Montoya has persevered and the program is finding its legs, and is growing.

Read more here.

Monday, September 9, 2013

Pain Awareness Month and Invisible Illness Week

September is National Pain Awareness Month, and September 9-15 is Blogging for Invisible Illness Week.
We're blogging to raise your awareness of the pain we're aware of every day, and the invisible illnesses that keep us from being able to "be all that you can be" – you can't maximize your potential when a few minutes of chores sends you back to bed the rest of the day.
Invisible disabilities include lupus, diabetes, chronic pain, epilepsy, lung conditions such as asthma or chronic bronchitis, chronic fatigue syndrome, fibromyalgia, bad back, arthritis, HIV/AIDS, mental illness, learning disabilities, ADHD, cancer, traumatic brain injury, and autism.  96% of people with chronic medical conditions show no outward signs of their illness – for example, you can't tell someone has asthma until they're in the middle of an attack.
Half of all Americans have a pre-existing condition.  10% of Americans have a disabling condition – just because someone doesn't walk with a cane or use a wheelchair doesn't mean they aren't disabled.  In my case, walking with a cane would cause worsening of problems with my hands, arms and shoulders, so I'm avoiding that as long as possible.  But because I force myself to walk without an assistive device, many people assume that I'm just lazy when I sit in the handicapped seating on the bus, or just cheap when I ask about the disabled discount on Amtrak.  Gee, I'm sorry I don't fit your stereotype.
Since I've taken the advice to use a wheeled cart instead of carrying things, I've noticed that a lot of people treat me like I'm homeless ... no matter how I'm dressed.  Apparently the thought that someone with a back problem or a heart problem or an arm/shoulder problem shouldn't be carrying things never crosses their minds....
About a quarter of people with an invisible condition have some mobility limitation.  Just because you don't see an assistive device doesn't mean the person who parked in the crip space isn't legally entitled to park there. 

If you write about your invisible illness, post a link at:

Sunday, September 8, 2013

10 Ways to Make Your Invisible Illness Visible - Invisible Illness Awareness Wk


Monday Chat: Why does it matter if the illness is INVISIBLE?


Problems of the Sick and Disabled


"The other problem is home health care givers who steal from the elderly ... money, checks, pills. It's sad the way our elderly are not taken care of."  -- Gail Anderson


I've heard from many patients that after they've spent money they can ill-afford hiring someone to do chores they can't manage themselves, they often find things missing.  If the hired person asks to use the bathroom, they may rummage through the medicine cabinet and take some of your pills; you think they're safe if they're out of sight, but they're not.


If the hired person has reason to go into the bedroom (such as needing to walk through the bedroom to get to the bathroom), they may take a moment to rummage through drawers -- bedside tables are often where pills, checkbooks, and guns are kept, and dresser drawers will often yield jewelry or other valuables.


It's best, before letting anyone into your home, to put all your pills (except the ones you're going to take that day, which should be in a container in your pocket), cash, checkbook, credit cards, jewelry, etc., in a locked box, and either keep that box in your sight all day, or put it in a place that's not likely to attract attention (ladies, that old feminine protection box is a good hiding place!)