in the past 2weeks, I heard 2 different stories of women that got denied health care even though they knew something was wrong.
The first one had a lump in her breast. she told the doctor who dismissed that as being part of fibromyalgia. It was cancer.
The second one is a long time patient with fibromyalgia also, Who had severe pain after a fall, was returned home with no treatment. 3 years later, after continuous suffering, she committed suiicide. her post mortem examination demonstrated that she had a pelvis fracture.
http://niceguidelines.blogspot.com/2011/07/post-mortem-shows-fractured-pelvis-yet.html
These stories show the horror of discrimination that us patients with invisible diseases go through day in day out. ME/CFS, Lyme disease and fibromyalgia are horrible, often lifelong diagnosis where it seems like many physicians are given the opportunity to think that any symptoms these patients report are fake, unreal, imaginary, and benign.
If you are a physician, a health care professional, or working with a few million dollars of health care budget, please remember that this patent could be your mother, your daughter, your brother, or your spouse. Also please remember that only a very small minority of patients invent symptoms in order to attract attention. All of us patients would rather live the only life we've been given by doing what we love dooing and not being in pain, in bed.
Nuff said.
Monday, July 18, 2011
Sunday, July 3, 2011
Letter to our canadian health minister
The honourable Leona Aglukkaq, Canada Health Minister.
Recently I have heard you assigning 5 millions into a clinical trial of “liberation therapy” for multiple sclerosis patients. These patients were going out of country to get this procedure done, and following their request to offer the treatment here in Canada, you agreed and allocated some money.
I am a patient with ME/CFS, (myalgic encephalomyelitis/ chronic fatigue syndrome) which is a neurologic disease as per the World Health Organization. This disease get very little respect in the medical world and very few physicians are knowledgeable about it. In fact I would be surprised that medical students get appropriate teaching about it. ME/CFS can be just as severe as someone with congestive heart failure, end-stage AIDS or progressive MS.
Patients with ME/CFS are usually left to their own mean, receive no medical care and can be very disabled by this illness. The burden it causes to society is enormous, from loss of wage, to medical costs to disability pension payments. Patients are also often discriminated against due to the name of this illness, since most physicians who haven't received any education for ME/CFS think this is quite a benign illness. Lots of patients will report that their physician do not take their symptoms seriously, like chest pain, headaches and other neurologic symptoms. In fact the 3 main causes of deaths for ME/CFS patients are cancer, cardiac events and suicide. Suicide happens due to the lack of support, medical care and beliefs that us patients are malingerers.
Mistreatments have happened in the past with MS patients who would be hospitalized in psychiatry and diagnosed with hysterical paralysis. Recent studies have shown that ME/CFS is not a psychiatric illness, does not get treated with cognitive behavioral therapy or graduated exercise therapy, and may be of infectious origin, from the work of Lombardi et al at the Whittemore-Peterson Institute and Shutzer et al.
Statistics Canada counted over 413 000 ME/CFS sufferers in 2010, a 25% increase compared to the last statistics in 2005. Yet recent studies have shown that 80% of ME/CFS patients do not get diagnosed as such and usually discounted as simple fatigue. The amount of money awarded for our illness has been abysmal, lower than 1 million dollar in total in the last 10 years, and most research have been of psychological or behavioral nature. In contrast, there are between 50 and 75 000 patients with MS in Canada that receive millions and millions of dollar in research every year.
Immunologists have proven immune activation and changes in cytokines, natural killer cell function and chronic viral reactivation which are totally ignored in Canada. Moreover, patients with ME/CFS may have an infectious retrovirus as per Lombardi et al.
Patients with ME/CFS get no healthcare here in Canada and no research. The numbers of patients are growing rapidly, however their concerns are still discounted. It is time that our governments who have once received our taxes wake up and start paying attention and stimulate research in our field. Moreover, it is time that the medical field wakes up and that more physicians get trained in caring for us. The fact that this complex illness belongs to no medical specialty is a travesty.
Currently in the USA a clinical trial (phase 3) of Ampligen is going on. Ampligen, an immuno modulator has been in the market for over 15 years now- yet it hasn't been approved to use. Patients should be offered this medicine so they can get relief from their illness and perhaps return to work. Patients should have the same access to health care as patients with cancer or HIV/AIDS.
Today Mrs Aglukkaq I am requesting your attention. Canada is hosting the international ME/CFS conference in Ottawa in September, yet, beyond our community, no one knows about it. I am requesting that you stimulate research funding for ME/CFS and recommentd physicians to get educated about our disease, and start offering treatments like Immunovir, Rituximab (Norway study) or Ampligen and anti-virals such as Valtrex and Valcyte (Lerner, Montoya). Pathogen studies like XMRV and other Gammaretroviruses should be of great concern for our governments and should be researched with great care.
It is time that our Canadian government pays attention to over 413 000 citizens who are sick and get no health care.
Thank you, Kati sick for 2 years and 8 months.
Saturday, June 11, 2011
Can Science keep up with "good" science?
I am fairly new in the world of ME/CFS. 2.5 years of being sick is considered rookie of the year, compared to the veteran warriors out there who have been stuck with this disease for 10-20- even 30 years. 2.5 years of this hell, facing discrimination, bias, disbelief on top of being ill, and trying to cope, that's long enough. I can't imagine being sick for 10 or 20 years. I had plans for my life. The journey has changed direction drastically, and there doesn't seem to be motivation from the governments around the world to invest in research for this disease.
In October 2009, just a month or 2 after I realized that I may just have ME/CFS, Lombardi et al got published in the journal Science, announcing the detection of a new retrovirus in the blood of patients with ME/CFS and also in the blood of healthy control but at a much lower rate. I remember the day like yesterday. I had a dr appointment that day and brought the abstract to her. She didn't fall off her chair, and I couldn't understand why not.
See, there is a bias out there. Chronic fatigue, like many call it since it's shorter and more convenient, is not considered to be a real disease. The CDC says there are no biomarkers, they must be right. They also say that the treatment for this disease is anti-depressants, graduated exercise therapy and cognitive behavioral therapy. The bias started there. The CDC is supposed to be the authority, how can they be so far off, and why? What interest does the CDC have? Who is pulling the strings?
Soon after the Lombardi paper published, the head of the CFS program at the CDC announced that they would look for the retrovirus but it would be likely that they wouldn't find it. Dr Reeves is a psychiatrist. They didn't find it, as it happened in 2010, and in fact at the same time another replication study results was scheduled to be published in PNAS (Lo et al), however the CDC stopped them from publishing and that delay lasted several months.
Dr Coffin, prominent retrovirologist was invited to the October 2009 CFS Advisory Committee meeting in Washington and said that the Lombardi paper was as good as it gets for a first paper. He changed his tune a year later to claim contamination by mouse virus, leading to Retrovirology Journal to publish not one, but 4 different papers claiming that XMRV was just contamination or a lab artifact if you will.
Then just last week 2 more papers were published this time in Science, counteracting the claim of the retrovirus which prompted the editor of the journal to issue an expression of concern to Lombardi et al and requesting them to retract the paper. Dr Mikovits answered back with a "No way Jose!" (well something like that)
So here we are, us patients, waiting. While some are waiting for clinical trials and treatments, others felt they could no longer wait and decided to treat themselves with antiretrovirals. And guess what, for some of them, it's working! However some authors of negative studies like Ila Singh made it clear that patients should not get access to antiretrovirals due to toxicity issues. Dr Singh forgets that Tenoofovir is given to prevent HIV in gay men and also in women in Africa, so why would it be so toxic for patients with ME/CFS who don't even have a single drug approved by FDA to treat their disease?
Epidemics happened in the mid 1980's. Just about at the same time as HIV. However patients don't usually die of ME/CFS. Or at least it is not the official cause of death. And the CDC felt the epidemics were not true epidemics, and thought patients and doctors who cared for them were "hysterical". In an effort to contain the "hysteria" CDC decided to name the disease who was well defined in the past as myalgic encephalomyelitis, now chronic fatigue syndrome.
So doctors that see "chronic fatigue syndrome" in someone's chart as a diagnosis will consider all symptoms or problems as non urgent, not real, or not reasonable. The name discriminates more that one can think. Doctors have not learnt in med school about ME/CFS. Not many knows what to do, how to diagnose it (there are a few diagnostic criteria) or how to treat it. In fact, the doctors who have been there at patient's side all along, Dr Peterson, Dr Cheney, Dr Klimas, have been given the cold shoulder on more than one occasion.
So where are we going with all this? Patients are still waiting. There is still no more money allocated to research of ME/CFS, and ME/CFS still trails at the bottom of the list in the NIH funding competing with hay fever, climate change and gallbladder illness Check it out here. The big scorers, the usual HIV/AIDS, cancer, prevention, diabetes, cardio-vascular.
Despite a "State of Knowledge" workshop at the NIH, gathering experts and portfolio holders, and over 1 million of patients- a conservative number- just in the US, no new money has been announced, as the US government is in a financial crisis (though the military budget and NASA budget is ever expanding). Never mind that 1 million of people is debilitated and perhaps are transmitting this disease to their families. Never mind that these people could be you or your loved ones. Never mind that they have been sick for decades with no health care.
From a patient point of view, it is really hard to accept the reality that my tax money generously donated during the working years is not going to bail me out and that my government is not doing anything to get me healthy. It is really hard to accept that if I had cancer, I would already be a survivor and a hero, but if I have ME/CFS I have a malingerer status. It is really hard to accept that I may never go back on my bike again or travel the world again or enjoy the things I used to enjoy in the past. The cause of that would be poor decisions from the government and bias and discrimination.
So in 2011, the Whittemore-Peterson is still doing great research, however they have to fight allegation that their retrovirus is a contaminant, thus slowing their great research and our chances at prompt clinical trials and treatments. The WPI is still going underfunded by government grants and you can bet that the funds will dry quickly if more contamination papers get into the journals and the media splash that follows.
I still don't get the argument that blood of ME/CFS patients is more contaminated than the blood of healthy control- how do Coffin explain that? Contamination theory ain't working. People do not make antibodies when exposed to contaminant. Why isn't the Lombardi et al not yet replicated and getting papers saying they proved Mikovits wrong? Why do people do not believe that the Lo et al paper was a true replication? Why are Stoye, McClure, Coffin so adverse to a retrovirus affecting patients with ME/CFS, is it the disease, or is it the fact that they didn't find it despite spending so much time studying MLV's ?
As research is going on, the world is watching. Patients can no longer be silent and through the WWW, we have a voice. We are watching. We are asking the scientific community to take a good look at this disease and pay attention to what's going on. Patients need to politics to stay in one corner and the science to remain in a different corner. Governments need to fund research and take a good look at what has been going on at the CDC for so long. Equal opportunity for all is not happening for us.
Please help!
In October 2009, just a month or 2 after I realized that I may just have ME/CFS, Lombardi et al got published in the journal Science, announcing the detection of a new retrovirus in the blood of patients with ME/CFS and also in the blood of healthy control but at a much lower rate. I remember the day like yesterday. I had a dr appointment that day and brought the abstract to her. She didn't fall off her chair, and I couldn't understand why not.
See, there is a bias out there. Chronic fatigue, like many call it since it's shorter and more convenient, is not considered to be a real disease. The CDC says there are no biomarkers, they must be right. They also say that the treatment for this disease is anti-depressants, graduated exercise therapy and cognitive behavioral therapy. The bias started there. The CDC is supposed to be the authority, how can they be so far off, and why? What interest does the CDC have? Who is pulling the strings?
Soon after the Lombardi paper published, the head of the CFS program at the CDC announced that they would look for the retrovirus but it would be likely that they wouldn't find it. Dr Reeves is a psychiatrist. They didn't find it, as it happened in 2010, and in fact at the same time another replication study results was scheduled to be published in PNAS (Lo et al), however the CDC stopped them from publishing and that delay lasted several months.
Dr Coffin, prominent retrovirologist was invited to the October 2009 CFS Advisory Committee meeting in Washington and said that the Lombardi paper was as good as it gets for a first paper. He changed his tune a year later to claim contamination by mouse virus, leading to Retrovirology Journal to publish not one, but 4 different papers claiming that XMRV was just contamination or a lab artifact if you will.
Then just last week 2 more papers were published this time in Science, counteracting the claim of the retrovirus which prompted the editor of the journal to issue an expression of concern to Lombardi et al and requesting them to retract the paper. Dr Mikovits answered back with a "No way Jose!" (well something like that)
So here we are, us patients, waiting. While some are waiting for clinical trials and treatments, others felt they could no longer wait and decided to treat themselves with antiretrovirals. And guess what, for some of them, it's working! However some authors of negative studies like Ila Singh made it clear that patients should not get access to antiretrovirals due to toxicity issues. Dr Singh forgets that Tenoofovir is given to prevent HIV in gay men and also in women in Africa, so why would it be so toxic for patients with ME/CFS who don't even have a single drug approved by FDA to treat their disease?
Epidemics happened in the mid 1980's. Just about at the same time as HIV. However patients don't usually die of ME/CFS. Or at least it is not the official cause of death. And the CDC felt the epidemics were not true epidemics, and thought patients and doctors who cared for them were "hysterical". In an effort to contain the "hysteria" CDC decided to name the disease who was well defined in the past as myalgic encephalomyelitis, now chronic fatigue syndrome.
So doctors that see "chronic fatigue syndrome" in someone's chart as a diagnosis will consider all symptoms or problems as non urgent, not real, or not reasonable. The name discriminates more that one can think. Doctors have not learnt in med school about ME/CFS. Not many knows what to do, how to diagnose it (there are a few diagnostic criteria) or how to treat it. In fact, the doctors who have been there at patient's side all along, Dr Peterson, Dr Cheney, Dr Klimas, have been given the cold shoulder on more than one occasion.
So where are we going with all this? Patients are still waiting. There is still no more money allocated to research of ME/CFS, and ME/CFS still trails at the bottom of the list in the NIH funding competing with hay fever, climate change and gallbladder illness Check it out here. The big scorers, the usual HIV/AIDS, cancer, prevention, diabetes, cardio-vascular.
Despite a "State of Knowledge" workshop at the NIH, gathering experts and portfolio holders, and over 1 million of patients- a conservative number- just in the US, no new money has been announced, as the US government is in a financial crisis (though the military budget and NASA budget is ever expanding). Never mind that 1 million of people is debilitated and perhaps are transmitting this disease to their families. Never mind that these people could be you or your loved ones. Never mind that they have been sick for decades with no health care.
From a patient point of view, it is really hard to accept the reality that my tax money generously donated during the working years is not going to bail me out and that my government is not doing anything to get me healthy. It is really hard to accept that if I had cancer, I would already be a survivor and a hero, but if I have ME/CFS I have a malingerer status. It is really hard to accept that I may never go back on my bike again or travel the world again or enjoy the things I used to enjoy in the past. The cause of that would be poor decisions from the government and bias and discrimination.
So in 2011, the Whittemore-Peterson is still doing great research, however they have to fight allegation that their retrovirus is a contaminant, thus slowing their great research and our chances at prompt clinical trials and treatments. The WPI is still going underfunded by government grants and you can bet that the funds will dry quickly if more contamination papers get into the journals and the media splash that follows.
I still don't get the argument that blood of ME/CFS patients is more contaminated than the blood of healthy control- how do Coffin explain that? Contamination theory ain't working. People do not make antibodies when exposed to contaminant. Why isn't the Lombardi et al not yet replicated and getting papers saying they proved Mikovits wrong? Why do people do not believe that the Lo et al paper was a true replication? Why are Stoye, McClure, Coffin so adverse to a retrovirus affecting patients with ME/CFS, is it the disease, or is it the fact that they didn't find it despite spending so much time studying MLV's ?
As research is going on, the world is watching. Patients can no longer be silent and through the WWW, we have a voice. We are watching. We are asking the scientific community to take a good look at this disease and pay attention to what's going on. Patients need to politics to stay in one corner and the science to remain in a different corner. Governments need to fund research and take a good look at what has been going on at the CDC for so long. Equal opportunity for all is not happening for us.
Please help!
Friday, June 3, 2011
Letter to Mr Obama
Dr Obama is recognizing the 30 years of research, clinical trials and science in HIV/AIDS that has improved the lives of millions around the world. From uncontrolled epidemics, to a stigmatize disease in the 1980's to giant leaps in science and treatments and human rights 30 years later.
However not many know that there was other epidemics in the 1980's, that were ignored by governments and most doctors, and still continues to this day. ME/CFS or still sadly called chronic fatigue syndrome is still a mystery for scientists, stigmatized by society, government and doctors and its sufferers are left for dead, litterally.
In response to a blog article I decided to reply to Mr Obama. I sent him the letter.
Mr Obama,
While thousands are researching HIV and AIDS around the world, and billions of $ in research has been allocated, there is a group of patients that suffered similar epidemics in the 1980's but has been grossly ignored, and naked in a demeaning manner to trivialize and minimize the suffering of the people. Tell most doctors that you have chronic fatigue syndrome, and due to stigma and lack of knowledge, chances are your health troubles will be discounted and you will be sent home without proper care.
Many, many patients have given up on health care due to the stigma barreer and loss of trust in the health care system, or they can't afford the care anyways due to loss of insurance benefits and the loss of disability benefits. There were epidemics of ME/CFS in the 1980's, Mr Obama, discounted as hysterical illness by epidemiologists at the CDC. To this day, the CDC still broadcast on their website that the best treatment for ME/CFs is therapy and anti depressants despite being recommended many many time by the CFS advisory committee that there were severe flaws to theor program.
There are over a million sufferers across the USA and 17 times more that amount around the world, waiting for research, clinical trials and treatments for a very debilitating disease that not only affectswomen, but men and children.
Mr Obama, scientists are being told that studying Me/ CFS would be a career suicide. doctors do not even learn about this disease in med schools, nor this disease belongs to any medical specialty. Doctors that treat, the very few of them are marginakized by their colleagues.
Patients do die of this illness only it is not tracked by statistics. Cancers, heart disease and suicides. the ones that are living are in a living death situation, housebound, bedbound with no help whatsoever. no patients would argue that this is a Tuskegee eperiment.
Patients wonder if the recent discovery of a link with retrovirus XMRV with chronic fatigue syndrome will be phased out. The research that have come out from the Whittemore-Peterson Institute have come out of recognititon of human suffering and that an nfectious link has been made and now violently repressed by scientific communtiy without deçent attempts at relication of the initial study by Lombardi et all in 2009. i request that Your government independantly investigate the politics behind XMRV, science and chronic fatigue syndrome.
There is much to say, much discrimination and injustice and this has to stop.
thank you, Kati sick for 2.5 years.
However not many know that there was other epidemics in the 1980's, that were ignored by governments and most doctors, and still continues to this day. ME/CFS or still sadly called chronic fatigue syndrome is still a mystery for scientists, stigmatized by society, government and doctors and its sufferers are left for dead, litterally.
In response to a blog article I decided to reply to Mr Obama. I sent him the letter.
Mr Obama,
While thousands are researching HIV and AIDS around the world, and billions of $ in research has been allocated, there is a group of patients that suffered similar epidemics in the 1980's but has been grossly ignored, and naked in a demeaning manner to trivialize and minimize the suffering of the people. Tell most doctors that you have chronic fatigue syndrome, and due to stigma and lack of knowledge, chances are your health troubles will be discounted and you will be sent home without proper care.
Many, many patients have given up on health care due to the stigma barreer and loss of trust in the health care system, or they can't afford the care anyways due to loss of insurance benefits and the loss of disability benefits. There were epidemics of ME/CFS in the 1980's, Mr Obama, discounted as hysterical illness by epidemiologists at the CDC. To this day, the CDC still broadcast on their website that the best treatment for ME/CFs is therapy and anti depressants despite being recommended many many time by the CFS advisory committee that there were severe flaws to theor program.
There are over a million sufferers across the USA and 17 times more that amount around the world, waiting for research, clinical trials and treatments for a very debilitating disease that not only affectswomen, but men and children.
Mr Obama, scientists are being told that studying Me/ CFS would be a career suicide. doctors do not even learn about this disease in med schools, nor this disease belongs to any medical specialty. Doctors that treat, the very few of them are marginakized by their colleagues.
Patients do die of this illness only it is not tracked by statistics. Cancers, heart disease and suicides. the ones that are living are in a living death situation, housebound, bedbound with no help whatsoever. no patients would argue that this is a Tuskegee eperiment.
Patients wonder if the recent discovery of a link with retrovirus XMRV with chronic fatigue syndrome will be phased out. The research that have come out from the Whittemore-Peterson Institute have come out of recognititon of human suffering and that an nfectious link has been made and now violently repressed by scientific communtiy without deçent attempts at relication of the initial study by Lombardi et all in 2009. i request that Your government independantly investigate the politics behind XMRV, science and chronic fatigue syndrome.
There is much to say, much discrimination and injustice and this has to stop.
thank you, Kati sick for 2.5 years.
Saturday, May 28, 2011
What is it like to have severe ME? Emily's story
"Severe ME is utterly devastating. It's time for proper research and proper care". That is the simple, but vitally important message that Emily is desperate for the world to hear. Beginning months ago, she has written a letter which she ho...pes will spread her message across the Internet and garner support for those severely affected by ME. Please help her achieve this.
(Permission to re-post)
Emily's Appeal
It has been said that the following is hard to read. But that is all we ask you to do: to read it, to forward/re-post it and to pledge your support for the many thousands of people like Emily who have to LIVE it.
"My name is Emily. I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old. In April 2011 I turned 30. I still have ME.
ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease.
My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now - it's like that every single day. After all these years I still struggle to understand how it's possible to feel so ill so relentlessly.
My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor's visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I'll go mad with the suffering. Of course it can also be as bad as this for no particular reason - and often is. I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music - the list is long. ME has made my body an agonising prison.
My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me. I'm on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable - this despite pain levels so high that I hallucinate.
I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration.
Many days I feel utter despair.
But, unlike some sufferers, over the long years in which I've had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going.
My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong. As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me - severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for - but I don't. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change.
And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others:
Please put an end to the abandonment of people with severe ME and give us all real reason to hope."
By Emily Collingridge 2010-2011
You can support Emily and everyone with severe ME by joining the "Severe ME/CFS: A Guide to Living" Facebook group http://www.facebook.com/group.php?gid=114380158590669. Both sufferers and non sufferers welcome! See also www.severeME.info
(Permission to re-post)
Emily's Appeal
It has been said that the following is hard to read. But that is all we ask you to do: to read it, to forward/re-post it and to pledge your support for the many thousands of people like Emily who have to LIVE it.
"My name is Emily. I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old. In April 2011 I turned 30. I still have ME.
ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease.
My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now - it's like that every single day. After all these years I still struggle to understand how it's possible to feel so ill so relentlessly.
My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor's visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I'll go mad with the suffering. Of course it can also be as bad as this for no particular reason - and often is. I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music - the list is long. ME has made my body an agonising prison.
My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me. I'm on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable - this despite pain levels so high that I hallucinate.
I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration.
Many days I feel utter despair.
But, unlike some sufferers, over the long years in which I've had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going.
My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong. As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me - severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for - but I don't. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change.
And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others:
Please put an end to the abandonment of people with severe ME and give us all real reason to hope."
By Emily Collingridge 2010-2011
You can support Emily and everyone with severe ME by joining the "Severe ME/CFS: A Guide to Living" Facebook group http://www.facebook.com/group.php?gid=114380158590669. Both sufferers and non sufferers welcome! See also www.severeME.info
Sunday, May 8, 2011
A very much needed commentary from Craig Maupin
I have been fairly quiet in the last month dealing with health issues and stressors that all patients with this illness encounter. However I could not skip this commentary from Craig Maupin, I think it is just and it is important for all advocates of our illness to read. I hope that each one of us take a look at the impact we are leaving behind us.
Our Advocacy: Lasting Damage Done,
Despite the Best of Intentions
By Craig Maupin at http://www.cfidsreport.com
In the cinematic realm, good intentions are always rewarded. Real life is less forgiving than cinema. In real life, a poor strategy may be well-intentioned, but such strategy may still hurt vulnerable people --deeply and irrevocably.
Several actions by a small minority of the CFS community are hurting vulnerable people. Like most strategies, their actions may be well-intentioned. Through their efforts, this minority may feel an emotionally cathartic release and empowerment. Yet, the best of intentions won't keep counterproductive strategies from hurting families affected by CFS -- all of us.
I love this community. Like each of us, I have suffered and experienced great loss as a result of this biomedical illness. But counterproductive efforts compound that loss. To stand by and say nothing is to idly watch damage being done.
What strategies am I speaking of?
1. Verbal abuse and anger-fueled interactions with the scientific community.
This illness will never be defeated until we forge positive relationships with the scientific community. Period. A solution will not come any other way.
For every bridge burned or researcher incited, lasting damage is being done to families and children suffering from this disease. I am deeply concerned that the roving bands of internet advocates extending, rather than alleviating, the suffering caused by this disease.
2. Unreasonable demands and heated interactions with journalists.
Solid journalists must tell more than one side of a story. Objectivity should be their job.
A few weeks ago, the professionalism of a journalist who has been fair in her coverage of this disease was harshly criticized. It didn't surprise me that her next article seemed to subtly portray those with this illness in a different, and harsher, light.
Like my aforementioned concerns about interactions with the scientific community, burning bridges to journalists will extend and entrench public attitudes behind the suffering of those with this disease.
3. Patients acting as 'laymen virologists', passionately engaging the scientific community.
I have felt this disease's full impact. As a result, I am absolutely, 100% confident this disease will have its day. I say that with no hesitation. A virus or immune defect is a reasonable explanation for the subgroups of CFS patients with a viral onset, high titers to various viruses, and abnormally expressed cytokines.
That said, those 'laymen virologists' who are passionately combative with the virology and scientific community online are creating poor perceptions of people with CFS and stifling curiosity about the illness. Sufferers of CFS desperately want hope. But a passionate desire for hope should not cause us to overlook the qualifications needed to engage complex virological topics, without losing our credibility. The scientific community undeniably knows the difference.
These heated engagements make it less likely that sympathetic researchers will establish cooperative relationships and successfully challenge attributions blocking progress. Published research by credible scientists is the best way to change perceptions about this disease. Laymen debating scientists -- on our behalf --will have the opposite effect.
4. Mass letter campaigns
Given some of what I am seeing written on behalf of those with CFS on message boards and blogs, I am very concerned that mass letter writing campaigns are a counterproductive strategy. I'll leave it at that.
Anger is often a byproduct of loss and suffering, and the CFS community has seen its share. But rather than let anger and passion guide our decisions, each advocate should consider the long-term effects of their efforts. If our efforts are not creating collaborations, do not build trust and confidence in our community, and fail to portray those with CFS in a positive light, families affected by CFS will harmed. The harm done may last decades.
Harmful and permanently damaging strategies may stem from very real problems. Unfortunately, much of the scientific community's history with this disease has been sloppy and disinterested. Science is often a human consensus, and we are naive to think that consensus is not influenced greatly by gender attitudes, cultural beliefs, professional environments, and language. But trust, relationships, and credibility must be built over time, if we are to change perceptions. Our history is no excuse to deepen our problems.
These four strategies (listed above) are not helping those with CFS. Rather, they are reinforcing and entrenching negative perceptions of CFS - -and hurting people in the process. In the last six months, what I have seen on blogs and forums -- often purported to be done our behalf -- is extremely disheartening and discouraging to me. Lasting damage is lasting damage, even if done with the best of intentions.
Articles on the CFS Report may be copied and posted to forums and other sites. Craig Maupin may be reached at editor@cfidsreport.com
Tuesday, April 5, 2011
Expectations
Patients with ME await with much impatience for Thursday and Friday April 7th and 8th 2011. There will be a very important conference at the NIH (National Institute of Health) called "The state of the Knowledge". You can view the agenda here. Interestingly, the conference is overbooked and some will have to watch it from a TV in an adjacent room- I feel really sorry for those who booked a flight and won't even have a chance to applaud Dr Mikovits in person. 2 of our long time advocates and also patients, Pat Fero and Mary Schweitzer have even been allocated 10 minutes each to speak. They have been part of the organization committee, which provides a certain satisfaction that patients have been consulted for this. I personally am very thankful for Dr Mangan at the NIH for coordinating this conference and dealing with the glitches all along.
It is meant as an opportunity for scientists and physicians of the NIH to network and mingle with the experts in ME/CFS and (hopefully) offer help and funding for further research. This is greatly needed, since patients with ME get 3.64$ per person, per year, in funding from the US governments (that is not counting the children). Khaly blogged about it here and the source of this information comes from Pat Fero, a long time patient advocate who lost her son to cardiac arrest at age 22, as a consequence of ME/CFS.
Yes, people die of ME/CFS. Cancer, heart problems and suicide. You can view our memorial list here. It is humbling to read through and think about human suffering.
This meeting was long time coming. In fact, the last time there might have been such meeting was in 1992... Of what I read, the agenda was much similar. (Look it up here) So, some 20 years later, nothing has changed. Our trustee pioneers like Dr Peterson, Dr Klimas, Dr Cheney, Dr Lapp, Dr Jason, Dr Hyde Dr Bell and the likes have been ignored for 20 years, and more. Funding for this illness has been abysmal, yet the society costs of disability have been astronomical.
My personal opinion is that because the CDC has deemed this disease "benign", "psychological" and "no tests are necessary", because the CDC has stalled research and made the diagnosis definition so hard to figure out, because the CDC has deemed the illness "a woman's illness", patients are been left for dead, and left to deal with it all by themselves. The CDC has prevented research on viral causes to happen from early on, when they were called to investigate epidemics in at least 2 different areas, Lyndonville, NY and Incline Village Nevada. In both cases, the local doctors were made fun of, and after the visit of the CDC, they never heard of them again. This is criminal.
The CDC worries more about flu and an obscure illness in the middle of Africa that affects 3 people than millions of people that have been debilitated for decades with an illness that they can't even define or for that matter, even find the right cohort for. In fact, these days the CDC is researching "fatiguing conditions" and not ME/CFS, probably a strategy to quietly exit the controversy and hot water they've been in for the last 3 decades.
So this week, all patients are expecting fireworks. Patients want to regain their lives and depend on scientists, and funding for research and clinical trials. It will be an opportunity for Dr Mikovits to explain her science, and how to find XMRV, the old fashion way. She will face Dr Coffin who is apparently a prominent retrovirologist gone bad- he decided that XMRV was lab contamination, and published many papers in this regard.
The stakes are high, at least for us, dear scientists. This is your opportunity to shine and make a difference in millions of lives around the world.
It is meant as an opportunity for scientists and physicians of the NIH to network and mingle with the experts in ME/CFS and (hopefully) offer help and funding for further research. This is greatly needed, since patients with ME get 3.64$ per person, per year, in funding from the US governments (that is not counting the children). Khaly blogged about it here and the source of this information comes from Pat Fero, a long time patient advocate who lost her son to cardiac arrest at age 22, as a consequence of ME/CFS.
Yes, people die of ME/CFS. Cancer, heart problems and suicide. You can view our memorial list here. It is humbling to read through and think about human suffering.
This meeting was long time coming. In fact, the last time there might have been such meeting was in 1992... Of what I read, the agenda was much similar. (Look it up here) So, some 20 years later, nothing has changed. Our trustee pioneers like Dr Peterson, Dr Klimas, Dr Cheney, Dr Lapp, Dr Jason, Dr Hyde Dr Bell and the likes have been ignored for 20 years, and more. Funding for this illness has been abysmal, yet the society costs of disability have been astronomical.
My personal opinion is that because the CDC has deemed this disease "benign", "psychological" and "no tests are necessary", because the CDC has stalled research and made the diagnosis definition so hard to figure out, because the CDC has deemed the illness "a woman's illness", patients are been left for dead, and left to deal with it all by themselves. The CDC has prevented research on viral causes to happen from early on, when they were called to investigate epidemics in at least 2 different areas, Lyndonville, NY and Incline Village Nevada. In both cases, the local doctors were made fun of, and after the visit of the CDC, they never heard of them again. This is criminal.
The CDC worries more about flu and an obscure illness in the middle of Africa that affects 3 people than millions of people that have been debilitated for decades with an illness that they can't even define or for that matter, even find the right cohort for. In fact, these days the CDC is researching "fatiguing conditions" and not ME/CFS, probably a strategy to quietly exit the controversy and hot water they've been in for the last 3 decades.
So this week, all patients are expecting fireworks. Patients want to regain their lives and depend on scientists, and funding for research and clinical trials. It will be an opportunity for Dr Mikovits to explain her science, and how to find XMRV, the old fashion way. She will face Dr Coffin who is apparently a prominent retrovirologist gone bad- he decided that XMRV was lab contamination, and published many papers in this regard.
The stakes are high, at least for us, dear scientists. This is your opportunity to shine and make a difference in millions of lives around the world.
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