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A Father Responds: Riding Hard for ME/CFS Research

Everyone’s Nightmare

It was a nightmarish situation.  Struck down by ME/CFS at the age of eight after a series of staph/herpes infections and infectious mononucleosis, the Spearing’s formerly healthy and energetic daughter, Stephanie, was soon confined to her bed.

Then it got worse. Much worse.  As Stephanie’s illness progressed, severe sensory problems left her unable to tolerate bright light, sounds, smells and touch. Migratory nerve and abdominal pain left her in severe pain much of the time. Dysautonomia and muscle weakness left her unable to walk. Food sensitivities  and gut problems left her unable to tolerate many foods and her weight dropped precipitously.  The UK health authorities were – surprise, surprise –  no help at all. They didn’t even attempt to be polite in their denials.

Improvement

stephanie spearing

Stephanie has improved tremendously but is still far from being able to lead a normal life

It was a tragic story that could have easily lead to an even more tragic ending but Stephanie’s move out of the  damp UK into the colder but drier climate and more ME friendly health system in Canada helped  Rest and more rest, dietary changes, probiotics and immune supplements produced progress.

Seven years later Stephanie is still weak but she no longer experiences the severe sensory problems and pain she once did. She’s not in school but no longer needs her wheelchair and is able to go on walks. Stephanie’s reduced suffering is a great relief to her parents but they want their entire daughter back.

Riding for ME/CFS Research

They want real relief. They want mounds of research. They want their daughter well and they don’t want anyone else to go through what Stephanie and they went through. The awful nights. The walking on tiptoes in order not to cause their daughter – huddled in her bed upstairs – pain from too much noise.  The ugly comments from the medical authorities.

Everyone is affected by these severe illnesses. Some give up in the face of the opposition but Peter Spearing  has just gotten more determined.  In three days in his Ride For ME/CFS Research Peter is riding 100 kilometers in Tour de l’Île de Montréal cycling event  to raise funds for the Simmaron Research Foundation. He’s going to ride full out – as hard as he can.

Ride For ME/CFS research

The Institute’s collaborative efforts with top researchers and Dr. Peterson’s years of experience drew the Spearmans to the Simmaron Research Institute

When asked why they choose the Simmaron Research Institute Stephanie’s mother Suzy emphasized Dr. Peterson’s years of experience, and the close ties the Institute has forged with important research efforts across the globe.  One of the first articles they read about ME/CFS, she noted, involved Dr. Peterson’s efforts in the Incline Village outbreak over thirty years ago.

Created in 2012, the Simmaron Research Institute is dedicated to scientifically redefining how ME/CFS is studied and treated. It’s dedicated to giving people like Stephanie options. To breaking up the ignorance that is causing so many people to be cruelly treated. To producing an environment in which ME/CFS is given the resources that other chronic illnesses are.

The Institute is currently participating in and/or funding work on

  • The gut microbiome
  • Tick, mosquito borne and other pathogens
  • Determining subsets and defining ME/CFS
  • Epidemiology including the long term effects of ME/CFS
  • A genomic analysis of immune cell functioning
  • The cause of the natural killer cell dysfunction
  • The extent of severe T-cell abnormalities found
  • Autoimmunity, non-Hodgkin’s lymphoma and cancer prevalence
  • Ampligen’s effectiveness in treating ME/CFS
  • Spearheading efforts to make immune tests a standard part of diagnostic protocols
  • Collaborating with Columbia University to train future doctors how to treat ME/CFS
Simmaron Research Foundation

The Simmaron Research Institute is dedicated to scientifically redefining ME/CFS

Peter, Suzanne and Stephanie request that you support Peter’s efforts to bolster ME/CFS research by donating to the Simmaron Research Institute here.  Everyone, young and old, deserves a shot at a normal, healthy life.  (Please reference Stephanie Spearing in the dedication box provided).

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4 Comments

  • Lori

    May 29, 2015 at 9:56 pm - Reply

    My heart goes out to this family and Stephanie. My son, 9 at the time of onset, now 11 went through a similar set of infections and progressed as Stephanie did. We have researched and worked hard the past three years. He has improved significantly. My son rode and raced (BMX) competitively prior to his illness—we are hoping to get him back on his bike sometime in the future. I would be glad to share the protocols we have used and are currently using—my contact; lori.serpa@hotmail.com
    it has been a rough road, but we are in a much better place now.
    Our thoughts and prayers are with all of you!
    lori

  • Chris

    June 1, 2015 at 2:05 am - Reply

    Will be fantastic for a redefinition. My issue since 2004 is CFS and there’s very little appreciation and empathy in the medical community. There’s strong links to pathogens including Lyme disease that even 11 years ago hasn’t been explored by my medical advisers and my country. Instead, I’m driven away from them and placed in a medical backwater without sound explanations. Hopefully your good research won’t be limited geographically. It is, however, very nice to hear about recovery success stories, no matter how small. Gives people hope, however meagre.

  • Alden Lancaster

    July 28, 2015 at 2:10 am - Reply

    I am deeply moved by this Dad’s love for his daughter. I have known that Love is a healing force within the soul. My late father was my only supportive person re my ME/CFS/SEID in my family and I miss him beyond words can say. Now my Mom is too, through the veil of her moderate level Alzheimers — her love makes all the difference in my bedridden severe case; during her week or so visits every couple months, she wants to sleep next to me. That itself is healing.

    Stephanie has a deep and lifelong gift — that she can hold close and she will never forget — of her parents’ (Peter and Suzanne’s) extreme love and absolute support for her. To even move to another country — Canada — for her health. Such love this is. I thank God you are better, Stephanie, and will (as Quakers say) “hold you in the Light” for you to get LOTS moreso. Rest well, knowing how Loved you are and that Love changes everything. I lift up with admiration and humanity’s gratitude your parents, — and how your Dad has made the fight for your health and for others like you such a dedicated focus.

    May other parents / families read this, and become inspired to be as loving toward their ME/CFS/SEID-suffering child of any age, who needs their love deeply, … and inspired to give toward and fight for more funding/research/solutions for ALL whose lives have been and will be tragically “snatched away” by this disease.

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