Tuesday, October 02, 2012

CFSAC Meeting - My Testimony

The U.S. Department of Health and Human Services' CFS Advisory Committee (CFSAC) will be meeting tomorrow and the next day, October 3-4, 2012, in Washington, DC.

I will be attending the meeting for a few hours tomorrow and giving my testimony at about 11:15 am.  The committee has increased the time for public comment, with two public comment periods the first day and another on the second day - you can see the full agenda here.

And, they will be providing a live video streaming of the entire 2-day meeting!  Just go to this link, and you can watch and listen live to any part of the meeting (or the whole thing).

And, for a preview, here is my written testimony:
My name is Sue Jackson, and I have had ME/CFS since March 2002.  Both of my sons, ages 14 and 18, have it also; they’ve both been sick for eight years. Today I would like to focus on the urgent need to educate medical professionals, school administrators, and the general public about the severe and debilitating effects of ME/CFS, especially on children, teens, and young adults.

Every ME/CFS patient – no matter what their age – has his or her own horror stories of being mistreated and misunderstood by medical professionals, the very people we turn to for help and support.  These abuses are even more appalling when they happen to children and young people.  The following examples from an online parents’ support group illustrate the urgent need for education of both medical and educational personnel.

One pediatrician told a young girl with ME/CFS that the police would come and put her mother in jail if she did not get up and go to school.  Another pediatrician evaluated this same girl for just 20 minutes and determined she was school phobic and needed to take anti-depressants.  A general practitioner told this same family that he didn’t have time to read or research and dismissed them.  Imagine the impact on a young, developing psyche of being subjected to this kind of disbelief, derision, and lack of compassion over and over.

A young man of 20 who’d had ME/CFS for several years and suffered from the same kind of sleep dysfunction as millions of others with ME/CFS sought the expertise of a sleep specialist. After testing, the doctor told him he just needed to go to bed earlier. Then, this doctor proceeded to review every previous medical decision and treatment the boy had tried and told the family why each of them wouldn’t work (offering no alternatives).  He grilled this family relentlessly for a half hour. In the mother’s words, “My husband and son and I were so defeated after that appointment that it was almost 2 years before we could start seeking treatment options again. We just felt like no one believed us, and there was nothing anyone could do.”

A mother whose three sons have all been diagnosed with ME/CFS for over 10 years has a family “friend” who is a doctor who thinks she is crazy and has accused her of Munchausen’s Syndrome because she has tirelessly sought answers and help for her sons. Last year, after a decade of doctors’ appointments and research, this mom finally discovered that two of her sons have had Lyme disease and several other tick infections for many years.

A teen girl with ME/CFS saw an Infectious Disease specialist at a children’s hospital who berated her for using a wheelchair in order to manage occasional outings to the mall. He said that when his four-year old asked to be carried, he did not pick her up but made her walk so she would not develop any bad habits. The teenager left that appointment in tears after having her severe illness compared to a tired preschooler.  That same doctor told another teen girl, "Stop thinking about it, go to school, and it will go away!"

One mom who had learned about Orthostatic Intolerance took measurements of her daughter’s heart rate while standing and presented the data to their doctor, along with listing other common OI symptoms her daughter was experiencing such as itchy-feeling legs when standing. The doctor dismissed her data, saying contemptuously, “My heart rate would go up if my mother was standing next to me measuring it, too!” Then he told the girl to put some lotion on her itchy legs and “go back to school tomorrow!”

Our own family has been fortunate not to encounter such blatant ignorance or contempt from doctors, only because we were able to see top CFS specialists like Dr. David Bell and Dr. Susan Levine.  In addition, our family doctor understands CFS and has other patients with it, and our pediatrician was very open-minded and willing to learn, spending hours on the phone with Dr. Peter Rowe to learn how to diagnose and treat Orthostatic Intolerance.  They are the exceptions.

Most kids with ME/CFS and their parents have had similar horrifying experiences with school personnel.  That girl whose doctor refused to even consider Orthostatic Intolerance did finally get a diagnosis of POTS from another doctor.  When that diagnosis was presented to school officials, they asked the school psychologist if she agreed with the POTS diagnosis.  She responded derisively, “I agree that her doctor says she has POTS.”

Another teen girl with ME/CFS who was an honor student in her high school became much sicker while her underlying infections of EBV, HHV-6, and Rocky Mountain Spotted Fever were being treated. Her parents requested that she be allowed to drop two of her AP classes in order to lighten her load and allow her to graduate on time.  In response, school officials demanded that she attend an exam the next day, though she was sick in bed with a high fever at the time.

Our younger son’s ME/CFS diagnosis was met with contempt by his elementary school nurse. She insisted that Craig couldn’t have CFS because “he looks fine on the days when he comes to school.” Despite a letter from our pediatrician specifically stating that Craig had been diagnosed with CFS, the school nurse continued to tell the principal that he did not have a diagnosis. Even worse, she actually called our pediatrician and reprimanded her over the phone for 45 minutes for her diagnosis. The following year, she was named School Nurse of the Year for our district.

These anecdotes are just the tip of the iceberg.  Children and adults with ME/CFS are being bullied, ignored, and derided every day by medical professionals and school officials who do not understand – or even believe in – our illness. This is deplorable and inexcusable given the bulk of scientific research into all aspects of ME/CFS that exists today. Education is urgently needed to inform medical and educational personnel and the general public about the severity of ME/CFS, its incidence in children and teens, and the types of treatment and support that are available for all patients.


Anonymous said...

You rock, Sue! Thank you so much for your tireless efforts, not only to care for your children, but also for standing up for so many of who have children with CFS, or have it ourselves. I was just encouraging my 18-year-old to read your blog as you are quite an amazing role model. Thank you so much and I'll be thinking of your tomorrow!

Unknown said...

This is really good, Sue and Thank You too for doing this and speaking out for all our youngsters.

Anonymous said...

Thanks for your advocacy Sue!

Nitewriter said...

WOW this is awesome! Thank you for doing this.

Jennie Spotila said...

This was fantastic testimony, Sue! Very powerful and effective, and your delivery was great.

Never That Easy said...

Amazing (and awful) testimony. Thank you for sharing it with us, and with them. Hopefully it gets through to someone who can do something about it.