Archive for May, 2017

Making Music – and a Difference – for ME/CFS

May 28, 2017

Making Music For ME/CFS

For the second time this month, the loved one of an ME/CFS patient has dedicated talent and sacrifice to raise funding for Simmaron Research and awareness of the disease more broadly.

Michael Jasper met Terry’s husband, Silvestre, 13 years ago and over time the two couples became best friends, even like family to each other but for a while they were a family with a mystery: Terry would mysteriously disappear at times. When the Jaspars were told she had something called “chronic fatigue syndrome” the explanation helped even as it obscured.

terri sylvestre

Terri Gilmete – in her scooter – advocating for ME/CFS

It wasn’t until Michael and his wife Marie saw a screening of “The Forgotten Plague” earlier this year that they really began to  understand what was going on. Terry wasn’t just tired – she was really sick! They’d seen her only on her best days, which unfortunately were few and far between.

“The Forgotten Plague” turned out to be a line of demarcation for them. They’d pounded Terry with questions about the disease after that. They now know the history, they know the neglect, they know the seeds of change that are sprouting now and they wanted to do something for their friend.

Several months later Michael asked for a meeting and when Terry was well enough Michael and his family broke the news: he was resurrecting his music career and wanted to dedicate the song “Beachwalk” to Terry and the ME/CFS community. He’d composed it years before, and when he and his daughter, Marissa, got to work on the album, it was the first song they’d worked on.

Michael told me that he’d played in the greatest garage bands that never made it. Along the way, he’d played and toured around the world with many figures in the music industry. Now as he re-emerged into the music scene he was putting those connections to good use – having them join him on the new album he and his daughter – who, having just graduated from college with a degree in music –  were going to release in December.  Merging old and new –  his old-school R & B and funk roots with her contemporary pop and dance sound – the album will have a unique sound.

Beachwalk-flyerBeachwalk’s melody described for him a simple pleasure that few people with ME/CFS could enjoy:  a relaxing walk on the beach, the sun overhead, the sand in their toes – a walk that left them relaxed and rejuvenated. Such an easy thing to contemplate for most people but just a dream for Terry and so many others.

For me I heard the keyboards, horn and guitar singing a song of triumph; a song celebrating someone finally making it to their beach after years of effort. It was an uplifting feeling.

Music for Simmaron

It was out of a vision of Terry, their good friend of many years, and others with ME/CFS finally taking their well-deserved walk on the beach, that Michael is donating 50% of the proceeds from the sale of Beachwalk to the Simmaron Research Foundation to help people with ME/CFS.

Please take a  walk on the beach with Michael Jaspar, his daughter Marissa  and other as they play for Terry Gilmete and others with ME/CFS to support Simmaron. You can find Beachwalk:

Check out Jaspar 3D’s Facebook page here. Michael didn’t stop his advocacy with Beachwalk – he’s fully engaged and promoting ME/CFS events on it – including the June 2nd Millions Missing Rally in Sacramento.

Millions Missing Rally & a Song in Sacramento on June 2nd

The problem, of course, is that people with ME/CFS aren’t able to walk far, if at all. They’re largely missing from the rounds of daily life – an absence dramatically evoked by the MillionsMissing rallies featuring ME/CFS supporters and their shoes.

Millions Missing

Terry Gilmete and Linda Tannenbaum

This Friday, June 2, patients and loved ones will gather on the steps of the Capitol in Sacramento for a MillionsMissing Rally and a live debut of the Jaspars’ Beachwalk.

The Sacramento Rally featuring Terry Gilmete, Michael Jaspar and others has a story all its own. The woman who organized it, Marilyn Yu, also created “The Forgotten Plague” screening which opened Michael Jaspar’s eyes and got him, his wife and daughter involved. In 2016, Marilyn, who’s had ME/CFS for three years, got West Sacramento, Elk Grove and Sacramento to do proclamations of their own. She’s gotten the Sacramento City buildings lit up in blue for the  past 2 years. The Sacramento Convention Marque featured May 12 as ME/CFS Awareness Day. Marilyn also created a virtual run last year in which she raised some money for Simmaron.

On May 18th, a number of California patients including Terry Gilmete and Marilyn Yu met with Senator Glazers and Moorlach to sponsor SCR-40 which proclaimed May 12th ME/CFS Awareness day and the month of May Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Month in California. Senator Moorlach passionately spoke of his friend’s daughter who’s been disabled from ME/CFS for 18 years.

The striking and, in many ways, beautiful California resolution resolved that…

  • WHEREAS, ME/CFS has been found by the National Academy of Medicine to be “a serious, chronic, complex, and systemic disease that frequently and dramatically limits the activities of affected patients,” leaving them with a lower quality of life than patients with multiple sclerosis, stroke, renal failure, heart failure, and other chronic diseases; and
  • WHEREAS, The lack of tracking for ME/CFS by the CDC and the grossly inadequate NIH funding for research based on disease burden have hindered progress in diagnosing and treating ME/CFS, such that there is no FDA-approved treatment for the disease; and
  • WHEREAS, ME/CFS is a tragic and disabling disease that destroys the lives of many patients and imposes a severe toll on their families, friends, and caretakers;
  • WHEREAS, The economic impact of ME/CFS in the United States is estimated to be $20 billion to $50 billion per year (CDC February 2016) and likely costs the California economy billions of dollars in health care costs, patient care, lost productivity, and lost tax revenues;
From Australian Rally

From Australian Rally

The Legislature hereby proclaims May 12, 2017, as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day, and declares the month of May 2017, and each May thereafter, as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Month, to help spread awareness of the disease and the need for increased research funding, and to support individuals living with ME/CFS;…

On June 2nd, Michael Jaspar, Marilyn Yu, Terri Gilmete and others will all be at ME/CFS Millions Missing Rally in Sacramento at the CA State Capitol Steps-south side on June 2 from 11:30-1:30. A shoe exhibit will be on display from 10:30-4. The music will be an inspiration all our own in the ME/CFS community.

  • When: June 2, 2017, 10:30-4:00 shoe display, 11:30-1:30 rally and musical debut
  • Where:  CA State Capitol Steps-south side

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A Run for His Son…and Everyone: An ME/CFS Parent Steps Out

May 21, 2017

A run for his son…

Most people in their late 60’s probably aren’t running half marathons. Alex Ribaroff had run them twice before, when he turned 50 and 60, and he swore he would never do a half-marathon again.  But here he is, at age 67, three months into his training, on the verge of doing just that.

Tom Ribaroff ME/CFS

Tom was perfectly healthy until he came down with infectious mononucleosis at age 16

This time he’s not doing it to celebrate a milestone. He’s doing it to for his son, Tom.  Tom was a strapping young man – athletic, academically inclined and outgoing – when he fell prey at 16 to an Epstein-Barr virus (EBV) infection in the UK. Getting exposed to EBV as a child is usually a piece of cake but if you encounter it as an adolescent, it’s another deal indeed; it’s a very common trigger for ME/CFS.

Tom got hit so hard he had to leave school. Two months later, still not well but itching to get back, he returned – only to get hit harder by another bout. That was five years ago. Tom is at University now, he’s hanging on but everything other than academics – sports, exercise, socializing – is out.  It’s no way for a young man to get through college.

Tom and his family went through the same experience that so many other sufferers from ME/CFS have – the fruitless search for help – the suggestions to use CBT and graded exercise.

Slowly, Alex and his wife Denise learned more about ME/CFS, the many people affected, the few experts, its marginalization and it’s need for funding.  They’ve come to grips with the fact that their young son has a debilitating and chronic illness that many have not recovered from – and they decided to try and do something about it.

They’re raising money to support ME/CFS research. It’s not like they’re experts at this. In fact, they’re complete novices, but their burning commitment to help is pushing them to do things they’ve never done before.

When I asked them why they were stepping out like this, Alex and his wife described the helpless feeling they had watching their young son get sicker and sicker.   “You expect your children to be healthy” he said, and if they’re not then “you expect the medical profession to be able to do something about it.”  No one should have to experience that feeling around their children.

By chance, a year ago, a friend of the family sent them an article from the Guardian newspaper in the U.K., talking about the research advances being made by Mady Hornig and the Center for Infection and Immunity.

Hornig MD, and Ian Lipkin, a world-renowned pathologist, have taken a special interest in ME/CFS. The blood and spinal fluid studies they’ve done in collaboration with the Simmaron Research Foundation (SRF) and other groups found that ME/CFS patients first exhibit a pattern of high immune activation which is followed by immune exhaustion.  Their joint CII/Simmaron Research Foundation cerebral spinal fluid study found a degree of  immune dysregulation similar to that found in multiple sclerosis. (An expanded study is underway). Another joint CII/Simmaron Research Foundation study identified a new class of ME/CFS patients (“atypical patients”) who have unusual disease trajectories and test results). Their latest study found dramatic differences in the gut flora which may eventually lead to targeted gut therapies.

A conversation with Hornig led the Ribaroff’s to get in touch with Dr. Peterson and the Simmaron Research Foundation.  Only then did they feel that they had found a clinician who understood this illness and might be able to help them.

When they found out how many people’s lives are blighted by the disease, and how many people’s future has been darkened by the cloud of ME/CFS hanging over them, their focus shifted. The fight became about more than for Tom.  It became a fight for everyone who has this illness.

Banner-new-2017 from website

So, Alex at age 67 is now lacing up his running shoes for a half-marathon he didn’t ever expect to run again. He’s raising money for two groups – the Simmaron Research Foundation and Columbia University’s Center For Infection and Immunity-  that provided them with answers when they desperately needed them.

Alex Ribaroff

Alex was appalled by the helpless feeling he and wife had when Tom got sick. Now they’re doing something about that.

They’ve put the call for help far and wide to their friends, many of whom were shocked to hear the healthy, young man they’d known was struggling so much.  Jen Brea’s moving “TED talk” – now seen by over 1,200,000 people – proved to be a powerful introduction to a disorder many of them had never heard of.  Alex and Denise hope to raise $75,000 – the first $25,000 of which they will match.

The Ribaroffs are getting more involved. They’re going to meet with Dr. Peterson, Dr. Hornig and other luminaries at the London “Invest in ME” conference, to better educate themselves about global advances in research.

But first comes the run. In just two days Alex will put the memories of the last two runs aside and step out onto the track and run – for his son and everyone else with ME/CFS.

Please support Alex and Denise‘s commitment to help their son and many others with your donation to the Simmaron Research Foundation here.  (The Simmaron Research Foundation will receive half of the donations raised and will provide the other half to support Ian Lipkin and Mady Hornig in their ME/CFS work at the Center for Infection and Immunity.)  PayPal and Credit Cards accepted.

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Update: Sixty-seven year old Alex Ribaroff successfully completed the Bermuda Half-Marathon on the 25th of May :)