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On Monday, May 16, we lost another friend to Myalgic Encephalomyelitis, Pat Blankenship. She was just 67.
Here is an essay Pat wrote for the Obama-Biden Transition Project Health Care Report, December 2008. That was 8 years ago. We had hopes at the time it would make a difference at NIH (which continued to fund research into ME and CFS at $6 million/year, or $6 per person a year - less than they spend on male pattern baldness. The full report remains part of the federal records at HHS.
Living With M.E.
Pat S. Blankenship
Here is an essay Pat wrote for the Obama-Biden Transition Project Health Care Report, December 2008. That was 8 years ago. We had hopes at the time it would make a difference at NIH (which continued to fund research into ME and CFS at $6 million/year, or $6 per person a year - less than they spend on male pattern baldness. The full report remains part of the federal records at HHS.
Living With M.E.
Pat S. Blankenship
In the next few pages, there is a short summary of my experience with Myalgic
Encephalomyelitis. I became ill in 1989, and remain totally disabled now. I have been
disabled by M.E. longer than I worked as a productive member of society. I am an
astrophysicist, but spent the bulk of my short career working in computer
telecommunications. Before moving back to my family home in Alabama, I lived in the
Northeastern US, primarily the Washington area. That is where I sought treatment for
this new disease when I became ill, and found that there was no treatment that worked.
During the years I lingered there trying to find medical help, I became involved with the
CFS Coordinating Committee, now called the CFSAC. I gave testimony at several of
those meetings. I worked with the NIH to help select the first slate of patient members
of the committee, and I was also involved with the meetings at the CDC when the first
accounting scandal was made public. Those latter activities are public knowledge and
my involvement was small and brought about no positive outcome. That's why my
statement here is a personal one about how hard it is to live with this disease.
I was struck down at the age of 40, while working as a consultant for the federal government on communication interoperability issues, in November, 1989. In my case, I had an extreme viral onset that was like a severe case of influenza; it was like Texas flu or Swine flu, both of which I had during the years in which they were pandemic. As usual, there was supreme difficulty in obtaining a diagnosis. My knowledge of this disease was nil at that time. For all I knew, I had Lyme disease, or hepatitis, or any of a very large number of viruses I was tested for. I was finally diagnosed by an infectious diseases specialist who used the CDC 1988 definition of CFS, through a process of elimination. I've come to know a lot about what I now know is Myalgic Encephalomyelitis due to brute force exposure to it.
What is it like to have Myalgic Encephalomyelitis (M.E.)? There are physical, cognitive, and social as well as emotional aspects that have happened in my case; we are all different, for this disease has 'different results after inflicting the same insult' upon us. That is a phrase I learned probably 15 years ago from a fellow activist in the Washington, D.C. area. Here is a little glimpse of how my life crumbled from what was once a promising career at the top of a group of enterprising people who were planning for 'Battlefield 2005 telecommunications,' to what I am now, a broken woman who can barely string sentences together.
I have been totally unable to work since 1991, and have been disabled since that time. I lost my job. My legs literally went out from under me and I had to undergo lengthy physical therapy while using 2 canes to walk, haltingly and for only short distances. I walk much better now, after several courses of therapy, including two at facilities of the Warm Springs Institute in Georgia. There are times when I stand too long, and I begin to black out. I can avoid fainting if I sit down, and I will sometimes sit down in a public place on the floor rather than risk fainting. Other physical problems include the onset of fibromyalgia, and several organ system diseases which may be related to the autonomic nervous system aspect of M.E. Since I don't know if they are cause-and-effect, I don't relate them here, but I have become more-or-less bed bound, with only 2 to four hours of activity per day .
I was struck down at the age of 40, while working as a consultant for the federal government on communication interoperability issues, in November, 1989. In my case, I had an extreme viral onset that was like a severe case of influenza; it was like Texas flu or Swine flu, both of which I had during the years in which they were pandemic. As usual, there was supreme difficulty in obtaining a diagnosis. My knowledge of this disease was nil at that time. For all I knew, I had Lyme disease, or hepatitis, or any of a very large number of viruses I was tested for. I was finally diagnosed by an infectious diseases specialist who used the CDC 1988 definition of CFS, through a process of elimination. I've come to know a lot about what I now know is Myalgic Encephalomyelitis due to brute force exposure to it.
What is it like to have Myalgic Encephalomyelitis (M.E.)? There are physical, cognitive, and social as well as emotional aspects that have happened in my case; we are all different, for this disease has 'different results after inflicting the same insult' upon us. That is a phrase I learned probably 15 years ago from a fellow activist in the Washington, D.C. area. Here is a little glimpse of how my life crumbled from what was once a promising career at the top of a group of enterprising people who were planning for 'Battlefield 2005 telecommunications,' to what I am now, a broken woman who can barely string sentences together.
I have been totally unable to work since 1991, and have been disabled since that time. I lost my job. My legs literally went out from under me and I had to undergo lengthy physical therapy while using 2 canes to walk, haltingly and for only short distances. I walk much better now, after several courses of therapy, including two at facilities of the Warm Springs Institute in Georgia. There are times when I stand too long, and I begin to black out. I can avoid fainting if I sit down, and I will sometimes sit down in a public place on the floor rather than risk fainting. Other physical problems include the onset of fibromyalgia, and several organ system diseases which may be related to the autonomic nervous system aspect of M.E. Since I don't know if they are cause-and-effect, I don't relate them here, but I have become more-or-less bed bound, with only 2 to four hours of activity per day .
Early in the disease, for some months, I was unable to speak more than a few
words. I can usually carry on a conversation now; my self-retraining in what I call word
retrieval has been compared to what a stroke victim goes through. Still, I frequently
have to close my eyes to remember words though. Reading the printed word became a
thing of the past. I can now read a few sentences at a time, but my retention is very poor.
I listen to audio books now, and I like to joke that I can listen to the same mystery novel
over and over because I don't remember the end. In the past 6 years, I've also
developed permanent visual dysfunction too, called palinopsia, which makes it nearly
impossible to drive at night, and makes reading from a computer screen much more
difficult.
Memory is a very tricky problem now. I have a sort of sliding window of time in the recent past during which I can remember events. It may be 3 days ago up to 6 months ago, or the window may shut down at 3 weeks. I never know if I am going to remember an event, an appointment, or a person. In fact, I have more or less given up on people recognition; unless I see someone daily or maybe weekly, I do not recognize the face. The only reason I know about this sliding memory window is that I have lived with my sister for several years, and she has described it to me. I keep track of appointments and such on my cell phone calendar, without which I would never be able meet any of my obligations. This technology has helped me tremendously in the last few years.
I've written this memory description down and keep it for whenever I need to explain it to people, like doctors. Or, as in for this description of my condition for our input to the policy makers for President-elect Obama.
Maybe it is not obvious, but in becoming this ill and unable to function at any sort of professional level, I lost the friends that I had made throughout the years in my field. I lost track of my friends that I had still kept up with in academia, because I was still living in the same northeastern megalopolis where we had been friends. My extreme inability to travel – energy deficits, the need for frequent stops to sit or lie down, and other problems that are poorly understood by healthy people – also cut me off from many of my dearest friends, including my most 'significant other.' I stopped making new friends, unless they were sick like me and I got to know them through support group meetings, or in attending government committee meetings. Even then, I usually lost track of them (unless I made a photograph – I learned that was an important tool) due to memory problems and lack of functional time during each day.
Social isolation has become probably the most frightening aspect of living with M.E. The physical symptoms can only make you sick or dead. But isolation makes you miserable every hour of your day. It never ends. Of course this is true for all chronic illnesses, but M.E. Is so poorly understood by everyone who does not have it, it's not even possible to get a fair hearing from one's pastor or an organization that is intended to insure against isolation. Socially speaking, I am living in a dead zone.
My own family cannot find their way to an understanding of what has happened to me. I live in my own home, a huge house that I cannot clean, and cannot afford to hire people to clean or to take care of the lawn. So I am always attempting – and always unsuccessfully – to do those chores myself. The result – a feeling of self loathing because I can't do what I should be able to do. After being sick for almost 20 years, I still try to do what is of course impossible and act like I'm not sick.
That's irrational. So finally, there is the emotional part of this disease. I don't say that I never feel depressed, but I'm not clinically depressed. What I am is just what the book title said: Sick and Tired of Being Sick and Tired. Angry that the people I have trusted to find out what is wrong with me and to find out how to treat it, took the money and misused it; they stole my trust. They might as well have stolen my life. Afraid that I will never feel well enough to accomplish any of the things I had set aside in my younger years to do after I climbed my big career mountain. Afraid I will never again enjoy life like I did 21 years ago.
Memory is a very tricky problem now. I have a sort of sliding window of time in the recent past during which I can remember events. It may be 3 days ago up to 6 months ago, or the window may shut down at 3 weeks. I never know if I am going to remember an event, an appointment, or a person. In fact, I have more or less given up on people recognition; unless I see someone daily or maybe weekly, I do not recognize the face. The only reason I know about this sliding memory window is that I have lived with my sister for several years, and she has described it to me. I keep track of appointments and such on my cell phone calendar, without which I would never be able meet any of my obligations. This technology has helped me tremendously in the last few years.
I've written this memory description down and keep it for whenever I need to explain it to people, like doctors. Or, as in for this description of my condition for our input to the policy makers for President-elect Obama.
Maybe it is not obvious, but in becoming this ill and unable to function at any sort of professional level, I lost the friends that I had made throughout the years in my field. I lost track of my friends that I had still kept up with in academia, because I was still living in the same northeastern megalopolis where we had been friends. My extreme inability to travel – energy deficits, the need for frequent stops to sit or lie down, and other problems that are poorly understood by healthy people – also cut me off from many of my dearest friends, including my most 'significant other.' I stopped making new friends, unless they were sick like me and I got to know them through support group meetings, or in attending government committee meetings. Even then, I usually lost track of them (unless I made a photograph – I learned that was an important tool) due to memory problems and lack of functional time during each day.
Social isolation has become probably the most frightening aspect of living with M.E. The physical symptoms can only make you sick or dead. But isolation makes you miserable every hour of your day. It never ends. Of course this is true for all chronic illnesses, but M.E. Is so poorly understood by everyone who does not have it, it's not even possible to get a fair hearing from one's pastor or an organization that is intended to insure against isolation. Socially speaking, I am living in a dead zone.
My own family cannot find their way to an understanding of what has happened to me. I live in my own home, a huge house that I cannot clean, and cannot afford to hire people to clean or to take care of the lawn. So I am always attempting – and always unsuccessfully – to do those chores myself. The result – a feeling of self loathing because I can't do what I should be able to do. After being sick for almost 20 years, I still try to do what is of course impossible and act like I'm not sick.
That's irrational. So finally, there is the emotional part of this disease. I don't say that I never feel depressed, but I'm not clinically depressed. What I am is just what the book title said: Sick and Tired of Being Sick and Tired. Angry that the people I have trusted to find out what is wrong with me and to find out how to treat it, took the money and misused it; they stole my trust. They might as well have stolen my life. Afraid that I will never feel well enough to accomplish any of the things I had set aside in my younger years to do after I climbed my big career mountain. Afraid I will never again enjoy life like I did 21 years ago.
It took me several days to pull these few pages together, from material that I
mostly already had written. Along with an “executive summary,” I hope it will give some
insight into what living with M.E. Is like, and why we who have the disease cannot rest
until our few short pleas are met by our elected officials.
--------------------------
Addendum 1: Some things I wrote about CFS/ME in the past
In 1999, I published this information on my web site (since discontinued due to progressive illness) about the first time the CDC misspent funding for CFS research. It was informative then and still is now.
--------------------------
Addendum 1: Some things I wrote about CFS/ME in the past
In 1999, I published this information on my web site (since discontinued due to progressive illness) about the first time the CDC misspent funding for CFS research. It was informative then and still is now.
+++ DOLLARS AND SENSE +++ DOLLARS AND SENSE +++ DOLLARS AND
SENSE +++
I am working on a way to put these numbers (research funds misspent by CDC) into understandable context. How about this: For every $0.98 the CDC spent on CFS related research from 1995-1998 inclusive, they stole another $0.88 from the pot and spent it on other programs, and they stole $0.41 from that same pot and no one can tell WHERE it was spent.
Another way to state it: For every $1.00 Congress authorized to be spent on CFS research, CDC spent only $0.43 on research, stole another $0.39 and spent it on other programs, and then lost track of the remaining $0.18 and can't account for that at all. In other words, only 43% of the authorized funds were actually spent on CFS research.
If I still paid taxes, I'd be hopping mad. As it is, if I could hop, I would be also. I want to see careers in tatters and ruin. I want to see ACCOUNTABILITY.
NIH ++ CDC +++ NIAID++NIH ++ CDC +++ NIAID++NIH ++ CDC +++ NIAID
Now I have a question for NIH: How clean are THEIR accounts?
I am working on a way to put these numbers (research funds misspent by CDC) into understandable context. How about this: For every $0.98 the CDC spent on CFS related research from 1995-1998 inclusive, they stole another $0.88 from the pot and spent it on other programs, and they stole $0.41 from that same pot and no one can tell WHERE it was spent.
Another way to state it: For every $1.00 Congress authorized to be spent on CFS research, CDC spent only $0.43 on research, stole another $0.39 and spent it on other programs, and then lost track of the remaining $0.18 and can't account for that at all. In other words, only 43% of the authorized funds were actually spent on CFS research.
If I still paid taxes, I'd be hopping mad. As it is, if I could hop, I would be also. I want to see careers in tatters and ruin. I want to see ACCOUNTABILITY.
NIH ++ CDC +++ NIAID++NIH ++ CDC +++ NIAID++NIH ++ CDC +++ NIAID
Now I have a question for NIH: How clean are THEIR accounts?
------------------------------------
Addendum 2:
This is another snippet of information I put on my web page back in 1998. This is one of the meetings I attended and testified at.
This is another snippet of information I put on my web page back in 1998. This is one of the meetings I attended and testified at.
April 1998 Meeting of CFSCC
Before I started my presentation, I displayed a copy of the May, 1998, Reader's Digest which has an article about the American's with Disabilities Act (ADA) in which CFS is lumped with myopia and body odor as 'not a real disability.' After displaying the article, I told the group that more people will see this article than everything that has been produced by this Committee in its entire history. That is the reason I am asking for support from the Committee as follows:
Before I started my presentation, I displayed a copy of the May, 1998, Reader's Digest which has an article about the American's with Disabilities Act (ADA) in which CFS is lumped with myopia and body odor as 'not a real disability.' After displaying the article, I told the group that more people will see this article than everything that has been produced by this Committee in its entire history. That is the reason I am asking for support from the Committee as follows:
Proposal: CFSCC to reply to media coverage of CFS
* After 4 years, the CFSCC has yet to produce a single release of corrective information after negative press on CFS
* Attacks of CFS and PWCs are never-ending and not improving over time * Who speaks for PWCs?
Sample of press coverage of CFS:Washington Post July 1995
"Chronic Fatigue Rare, HMO Study Concludes"
* Citing CDC demographic studies, CFS branded as a rare diagnosis not
warranting study funding
* Major media outlet that provides articles for other newspapers across the
country
------------------------------------------------
Pat was a smart, funny, practical woman. Her intellect was lost to the nation 27 years ago. Then she simply got sicker and sicker. The stage of her illness is frozen in time in 2008 in this essay that she wrote.
Pat, I miss you now and I will always miss you. Thank you for everything you gave us.
Mary Schweitzer
* After 4 years, the CFSCC has yet to produce a single release of corrective information after negative press on CFS
* Attacks of CFS and PWCs are never-ending and not improving over time * Who speaks for PWCs?
Sample of press coverage of CFS:Washington Post July 1995
"Chronic Fatigue Rare, HMO Study Concludes"
* Citing CDC demographic studies, CFS branded as a rare diagnosis not
warranting study funding
* Major media outlet that provides articles for other newspapers across the
country
------------------------------------------------
Pat was a smart, funny, practical woman. Her intellect was lost to the nation 27 years ago. Then she simply got sicker and sicker. The stage of her illness is frozen in time in 2008 in this essay that she wrote.
Pat, I miss you now and I will always miss you. Thank you for everything you gave us.
Mary Schweitzer
