Stories and Facts

Arboretum, October 11, 2015

·      CFS and related illnesses are growing at an alarming rate for reasons that are unclear.

CFS and dysautonomia are far from rare, despite the fact that so few people have heard of them and so few doctors are equipped to treat them. Very little time is dedicated to these illnesses in medical school. 

I have been alarmed at the number of people I know who have these illnesses. I could spend much of my days helping individuals navigate these illnesses. I now have two neighbors, a college classmate and a high school classmate with POTS. All of them have reached out to me for help as they navigate the early stages of illness. I have also been in contact with three local girls with POTS. It's disheartening to watch them go through the process and see how little has changed since my diagnosis in 1999.

I also have a wonderful group of friends that I met through DINET starting in 2002.

·      There is a significant mismatch between the number of people with these illnesses and the number of doctors to treat them.

For example, Dr. Rowe is unable to take any new patients and has been for several years. Many of my friends with CFS and/or dysautonomia find themselves unable to get adequate care because there simply aren't enough doctors willing to deal with such complicated illnesses that require years of monitoring, time-consuming care, no easy fixes or clear treatments, and lower pay than other specialties.

I am one of the very fortunate ones amongst my circle of friends with these illnesses. 

This is one reason why I am so passionate about raising money to fund Dr. Rowe and his efforts to educate the next generation on the clinical challenges of CFS and the research.  I cannot imagine a better teacher than him. The world needs so many more doctors like him.

·      Most people experience a long delay before finding a specialist.

I did not begin blogging until 2005, shortly after I found Dr. Rowe. While I had seen other specialists, none were able to provide me with the type of care that I needed. Even one of the other top dysautonomia specialists in the country misdiagnosed me with a genetic disorder and told me there was nothing that could be done for me. Previously the only two specialists I could find were one who treated me for CFS and the other for dysautonomia. The cardiologist who originally diagnosed the dysautonomia told me: "On a scale from A to Z, you are a Z. I have never treated someone who is a Z and I don't know what do to for you."

I have said many times that I saw almost 100 doctors before I found Dr. Rowe. These doctors were in every specialty imaginable because I didn't have someone to integrate all of my symptoms until I met Dr. Rowe. 

I waited SIX years to find a specialist.

Had I found a specialist more knowledgable in dysautonomia more quickly, I would likely have had a much greater chance at healing. Those who are diagnosed within the first 1-2 years and are able to start the appropriate treatments, such as midodrine, florinef and beta blockers experience a higher rate of recovery.

When intervention occurs early, the medications support the body in the ways that it needs until it can begin to heal itself. The longer the delay in receiving treatment, the more difficult it is for the body to heal.

I had access to care that most people do not--I had the physical and financial support to travel to the doctors I wanted to see and I had the scientific skill to navigate complicated medical articles to help me find a diagnosis. 

And it still took SIX years.

 Idon't want another group of young people, mostly women, to miss out on so much of their lives because we have limited treatment options and very few doctors.

Be a dancing light,

Emily

Factoid: Quality of Life

At The Arboretum

·      Patients with CFS and related illnesses test lower in health-related quality of life than do those with many other chronic illnesses (i.e. cystic fibrosis, diabetes, sickle cell disease).

--Johns Hopkins University--

Goals: What I Want My Blog to Look Like

Stream at a Favorite Local Park

I've been mixing up the posts on my blog this month, trying to encompass a variety of topics and blog more frequently. 

I'd like to use Dysuatonomia Awareness Month and my birthday month in the following ways:

1. To continue working to raise money for Dr. Rowe/Dr. ANS. You can find the link to my fundraising page HERE. Thank you SO much to everyone who has donated so far. I'm overcome with gratitude at the success of the campaign so far and excited to watch the momentum continue.

2. To elaborate more on what is working for me treatment-wise, what new discoveries we have made over the past three years, and to share more about my team (headed by my point guard, Dr. Rowe).

3. To use Dysautonomia Awareness Month as a time to share some general, but powerful, facts about dysautonomia and related illnesses, especially Chronic Fatigue Syndrome. I'll also be sharing specific facts about the Chronic Fatigue Clinic/Dr. Rowe's Clinic at Hopkins, so that folks can have a better understanding of how his clinic works and why I am so passionate about helping his clinic in particular. I'll try to do this in short posts. Some of the information is new even to me.

4. To share some of the events of the past year that I've enjoyed with my new freedoms and health in celebration of healing, Dr. Rowe and life. I've often not blogged about big things because I was busy enjoying new experiences, but I'd like to share with many of you what's been keeping me busy!

I'd like to see the goals for this month trickle into the future as I try to make blogging and writing a greater priority. I need to write. As in, I need to write to survive. I've let my blog go in place of new adventures, but I'd like to balance things out a bit as we enter into the Fall and Winter months. 

Be a dancing light,

Emily

CFS Funding: Cut COMPLETELY From CDC Budget

One of My Bed-bound Years (2010)

I have spent 17 years with CFS and Dysautonomia. I have spent endless minutes, days, weeks and months in bed or reclining, unable to leave my house except for brief outings or appointments. I have suffered more than I ever thought imaginable. I still spend a lot of time in bed. It's hard to look at these photos of myself from years past, but it's a stark reminder of how this illness has affected me and my family.

People with CFS have a lower quality of life than those with many other chronic illnesses, and it is estimated to affect at least 1 million Americans, many of whom get sick during adolescence. 

Research is already limited and mostly relies on philanthropy. Precious few doctors have the knowledge or willingness to treat CFS patients. 

It's incomprehensible to me that, to begin with, federal funding for CFS in the current CDC budget was set at only $5.4 million. 

Now, CFS funding has been completely stricken from the Senate's 2016 version of the federal budget.

Really? No money for CFS? At all. 

It's the only disease for which funding was cut completely.

If you feel compelled to try to change the situation, please do so this week by participating in this email campaign to ask that federal funding be reinstated. 

I realize that we are all overwhelmed and busy, so I don't want to pressure anyone to do this. I do want to make people aware of the lack of funding, and give you the opportunity to participate if you are so inclined. 

Thank you in advance!

All of the details are below.

Blessings,

Emily

Smiling, but Still Mostly Reclining and Homebound (2012)

Please address your email to the following four staff members that serve the Senators on this particular budget committee (just copy and paste):

Laura_friedel@appro.senate.gov; Chol_pak@appro.senate.gov; Alex_Keenan@appro.senate.gov; Lisa_bernhardt@appro.senate.gov.

Here is a sample email for you to send. You can choose to/not to add to it.

Dear Senator:

I am writing to urge you to reinstate the $5.4 million for Chronic Fatigue Syndrome funding. This is included in the CDC budget under Emerging and Zoonotic Infectious Diseases, on Page 59 of the Senate Budget.  
I understand that the $5.4 million in funding submitted by the Centers for Disease Control for Chronic Fatigue Syndrome has been stricken from the 2016 appropriations bill by the Senate Appropriations Committee. This is an appalling act of inhumanity, and I urge you to reinstate the $5.4 million amount into the 2016 budget without delay.

As you may be aware, the prestigious Institute of Medicine of the National Academies published a landmark report on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome on Feb. 10 of this year. The IOM committee unequivocally and scientifically established that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a physiological, not psychological, illness. The IOM stated firmly that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is “a serious, chronic, complex, multisystem disease... In its most severe form, this disease can consume the lives of those whom it afflicts.”

The IOM committee further established that between 836,000 and 2.5 million Americans suffer from this devastating disease, which carries with it an economic burden of $17 to $24 billion to our country annually.

I am one of those Americans who has had their life and livelihood stolen by this illness, which renders 25 percent of us house- or bed-bound at some point. While the vast majority of us are not well enough to march on Capitol Hill to demand equitable funding from our government, rest assured we are still able to vote via absentee ballot.
As a member of the Senate Subcommittee, I urge you to reinstate this $5.4 million CDC funding immediately. You have an opportunity to be on the right side of history.

Sincerely,
Name
Email address
USPS address

Here is a link to the page where I am getting my information:  http://solvecfs.org/cdc-letter. 

The Solve ME/CFS Initiative is an excellent organization. Dr. ANS has worked closely with them for many years and received funding from them. The Solve ME/CFS Initiative was the first organization I had available to me when I first got sick.