I hear the FDA is looking for advice from the general public as of which disease needs special attention, and which disease deserves drug development done. This represents a rare opportunity for patients with ME to address the FDA and let them know what it's like to live with this damn illness, what kind of care we are getting around the world, how many of us are sick, and what needs to be done.
So tonight I am taking a few minutes to write to the FDA and letting them know how the life of millions of patients around the earth has been halted by this shitty disease and how we have been neglected and failed by our governments and health care systems.
I am inviting other patients to do the same, regardless on how sick they are. This is too important to hope that someone else will do it for you.
To whom it may concern.
4 years ago I got suddenly ill with a sudden onset of mononucleosis, with documented EBV infection. I never recovered. In fact when I was expected to recover, instead I found myself very sick with a necrotic gallbladder, in hospital for 2 weeks. When I was expected to recover from the gallbladder, instead I went further downhill and started having photophobia and symptoms of what I would later learn was POTS (Postural Orthostatic Tachycardia Syndrome). My GP thought I was depressed and had "chronic fatigue" so she insisted I needed anti-depressants.
In fact the disease I have is called myalgic encephalomyelitis, aka "chronic fatigue syndrome". I am at a loss when I have to say these 3 words because I know I will get stigmatized and labelled as a faker, and I must not be that sick after all if I have "chronic fatigue" - Please, no more of the CFS words- it is insulting and minimizing the illness that took away my life, my work, my hobbies and my future.
I can no longer work, I was a registered RN. I can no longer travel, I loved to travel from the viewpoint of my bike. I have seen the Alps, New Zealand and even biked across Canada. I can no longer do what I love. I am too sick. Most of my days are spent in bed. I can barely go out and buy myself groceries. I cannot read a book, it is too demanding cognitively.
There are just a few physicians around the world who have been brave enough to study us and to see us as being physically ill. So many papers prove that we have a discrete illness, with profound immune activation, viral reactivation, mitochondria dysfunction and autonomic nervous system dysregulation. Spect scans and MRI are abnormal, brain blood flow is abnormal and spinal fluid shows again abnormalities.
However there is also a part of medicine who is determined to fail us the patients, maintaining we have had childhood abuse and that we have false illness beliefs. The psychiatrists disseminate poorly conducted studies throughout the media and medical journals saying that we need cognitive behavioral therapy and graded exercise therapy. This propaganda is what has prevented medicine and all governments from helping us and researching us properly. These psychiatrists have huge conflicts of interest and links with insurance companies.
In Canada, we have a chronic diseases survey each year which estimates the number of patients for each diseases. One single question has been asked in 2001, 2005 and 2010 about our disease and it is: "Do you have CFS?" Patients need only answer if they have been diagnosed by a medical doctor. In 2001, it was estimated at around 200 000 patients. In 2010, there was a 205% increase to 411 500 patients. And yet, my canadian government is doing nothing about this inconvenient problem. 0 research. I strongly suspect that the canadians, just like the norwegians, the germans and the rest of the world is waiting to see what the US will do.
Respect for a disease comes with sound research and with sound drugs. Take the example of HIV/AIDS for instance. How much grounds has been covered from 1982 to 2012? How much money has been spent on the way to get there? From a gay disease to a world wide public health concern, so much ground has been covered.
Let's take another disease, multiple sclerosis. In the 1970's patients were said to have "hysterical paralysis" and hospitalized in psychiatry. We are not quite there yet in terms of treatment, but this disease is now getting the respect it deserves.
Patients with Myalgic Encephalomyelitis (CFS) have waited for decades to get health care. They have lost homes, jobs, families, and have given up getting competent health care all around the world. And honestly they are too sick to block a bridge and scream injustice. Moreover, many of our own have given up and taken their own lives, because they did not see hope for change.
Today I am asking you to pay attention to our disease. Millions are affected and in fact Dr Nancy Klimas, one of the expert in the field, mentioned that 80% are not even diagnosed. It is time that drug development happens, especially as it relates to immunology. Please reject any research about psycho stimulants, we are not tired, we are sick! Low Natural Killer Cell function needs to be considered as a viable biomarker of the disease and there should also be some consideration made on the gene activation after exercise which does not occur in healthy controls or fibromalgia patients (Light study, University of Utah).
I am asking you to recruit help from our experts, namely Nancy Klimas, Dan Peterson, Jose Montoya, Sonia Marshall, Andreas Kogelnik, and the like. We need clinical trials with Rituximab and we need drugs approved- Ampligen which has been sitting in phase 3 for decades. We need more drugs developed, trialed and used. Patients with ME can no longer be abandoned and left for dead.
Thank you, Kati Debelic.
Currently on Rituximab
So tonight I am taking a few minutes to write to the FDA and letting them know how the life of millions of patients around the earth has been halted by this shitty disease and how we have been neglected and failed by our governments and health care systems.
I am inviting other patients to do the same, regardless on how sick they are. This is too important to hope that someone else will do it for you.
To whom it may concern.
4 years ago I got suddenly ill with a sudden onset of mononucleosis, with documented EBV infection. I never recovered. In fact when I was expected to recover, instead I found myself very sick with a necrotic gallbladder, in hospital for 2 weeks. When I was expected to recover from the gallbladder, instead I went further downhill and started having photophobia and symptoms of what I would later learn was POTS (Postural Orthostatic Tachycardia Syndrome). My GP thought I was depressed and had "chronic fatigue" so she insisted I needed anti-depressants.
In fact the disease I have is called myalgic encephalomyelitis, aka "chronic fatigue syndrome". I am at a loss when I have to say these 3 words because I know I will get stigmatized and labelled as a faker, and I must not be that sick after all if I have "chronic fatigue" - Please, no more of the CFS words- it is insulting and minimizing the illness that took away my life, my work, my hobbies and my future.
I can no longer work, I was a registered RN. I can no longer travel, I loved to travel from the viewpoint of my bike. I have seen the Alps, New Zealand and even biked across Canada. I can no longer do what I love. I am too sick. Most of my days are spent in bed. I can barely go out and buy myself groceries. I cannot read a book, it is too demanding cognitively.
There are just a few physicians around the world who have been brave enough to study us and to see us as being physically ill. So many papers prove that we have a discrete illness, with profound immune activation, viral reactivation, mitochondria dysfunction and autonomic nervous system dysregulation. Spect scans and MRI are abnormal, brain blood flow is abnormal and spinal fluid shows again abnormalities.
However there is also a part of medicine who is determined to fail us the patients, maintaining we have had childhood abuse and that we have false illness beliefs. The psychiatrists disseminate poorly conducted studies throughout the media and medical journals saying that we need cognitive behavioral therapy and graded exercise therapy. This propaganda is what has prevented medicine and all governments from helping us and researching us properly. These psychiatrists have huge conflicts of interest and links with insurance companies.
In Canada, we have a chronic diseases survey each year which estimates the number of patients for each diseases. One single question has been asked in 2001, 2005 and 2010 about our disease and it is: "Do you have CFS?" Patients need only answer if they have been diagnosed by a medical doctor. In 2001, it was estimated at around 200 000 patients. In 2010, there was a 205% increase to 411 500 patients. And yet, my canadian government is doing nothing about this inconvenient problem. 0 research. I strongly suspect that the canadians, just like the norwegians, the germans and the rest of the world is waiting to see what the US will do.
Respect for a disease comes with sound research and with sound drugs. Take the example of HIV/AIDS for instance. How much grounds has been covered from 1982 to 2012? How much money has been spent on the way to get there? From a gay disease to a world wide public health concern, so much ground has been covered.
Let's take another disease, multiple sclerosis. In the 1970's patients were said to have "hysterical paralysis" and hospitalized in psychiatry. We are not quite there yet in terms of treatment, but this disease is now getting the respect it deserves.
Patients with Myalgic Encephalomyelitis (CFS) have waited for decades to get health care. They have lost homes, jobs, families, and have given up getting competent health care all around the world. And honestly they are too sick to block a bridge and scream injustice. Moreover, many of our own have given up and taken their own lives, because they did not see hope for change.
Today I am asking you to pay attention to our disease. Millions are affected and in fact Dr Nancy Klimas, one of the expert in the field, mentioned that 80% are not even diagnosed. It is time that drug development happens, especially as it relates to immunology. Please reject any research about psycho stimulants, we are not tired, we are sick! Low Natural Killer Cell function needs to be considered as a viable biomarker of the disease and there should also be some consideration made on the gene activation after exercise which does not occur in healthy controls or fibromalgia patients (Light study, University of Utah).
I am asking you to recruit help from our experts, namely Nancy Klimas, Dan Peterson, Jose Montoya, Sonia Marshall, Andreas Kogelnik, and the like. We need clinical trials with Rituximab and we need drugs approved- Ampligen which has been sitting in phase 3 for decades. We need more drugs developed, trialed and used. Patients with ME can no longer be abandoned and left for dead.
Thank you, Kati Debelic.
Currently on Rituximab
