Post by upnorth on Jul 5, 2007 22:57:43 GMT 10
I recently wrote an article about M.E./cfs research.
I read so much research and sometimes I get so jaded.
I needed a way to express my thoughts on everything I read and the state of research for M.E.
I sent my article to the M.E. association of Ontario for their newsletter. I wonder if they'll use it? Anyways, I thought I'd share it with you (although it's almost four pages -kinda long, I won't be offended if no-one reads it).
QUEST TO FIND THE INVISIBLE MONSTER
My personal take on the research into M.E./cfs……….
Like many folks, when I first became ill with M.E./cfs, I was in denial. However, later when I started accepting that I was really quite sick, I was unsatisfied with the explanations given to me by doctors about what was causing my suffering. I was given a diagnosis of M.E./cfs, but I wasn’t sure if I believed M.E./cfs was a real illness, or if it was the particular illness plaguing me. I knew whatever I had was pretty serious. Hearing “chronic fatigue syndrome” I imagined someone who was tired, not someone who was extremely sick and significantly incapacitated.
Hence, my journey into research… I started to research what this M.E./cfs was all about. I wanted to understand what it was that was stealing my life away. Perhaps at some level I thought understanding M.E./cfs would vicariously allow me to wield some kind of control over the monster that was living inside me. For a while, researching became an obsession. I read every article I could get my hands on. I would sit at the computer until I was dizzy. I learnt a lot of medical jargon. I became familiar with who the researchers were. Every time I’d read a new theory or study, I’d get my hopes up that the answer was close at hand.
But now I’ve been sick for 5 years and although I still stay up to date on the recent research, it is no longer an obsession. I now understand that research is a painstakingly slow process and that M.E./cfs research is often near the bottom of the pile of importance when it comes up against other diseases such as cancer, heart disease and MS with regards to funding and proliferation. My hope with regards to research is now tempered with a better understanding of reality; both the reality of the research process and the reality of this disease in particular.
It seems with M.E./cfs research, it’s often a process of one step forward and two steps back. It’s an illness that’s been shrouded in controversy, disbelief, and by some, an almost ridiculous adherence to the false idea that it’s merely psychological. Of course it doesn’t help that the majority of sufferers are women, or that those most inspired to advocate for more or improved research (those who have M.E./cfs), are often too sick and disabled to do so. How about those who improve or even recover? Well, if truth be known, if I recover I will probably go back to living (take back my life), and try to forget this nightmare ever happened, rather than spend my time advocating. (Thankfully everyone isn’t like me).
So what’s my take on the research into M.E./cfs? Honestly, I could probably write a book about my take on the research. But it would be a long, boring, cynical, and opinionated book. So instead I will give you a very brief overview about what I think is recent and exciting in M.E./cfs research and what I think the problems are.
EXCITING, VALUABLE, HOPEFUL
For now, (since this isn’t a book), I’m just going to describe what I think are two of the most exciting, hopeful areas of research at present.
1. The first area is called gene expression profiling. There are several groups of M.E./cfs researchers studying human genes and how they are expressing themselves. Rather than looking at mutations (damaged genes), they look at how genes in the human genome are reacting (are they up-regulated or down-regulated?). They compare normal, healthy people to people with M.E./cfs in order to see which genes are being expressed differently in those who are sick. And (surprise, surprise) they’ve found genes that are differently expressed in the M.E./cfs patients. These studies will hopefully lead to a specific test for M.E./cfs. Infact one of the researchers in this area (Dr. Gow) recently requested a patent for such a test. But more importantly, when they can discover what’s actually going wrong in the bodies of sufferers, research can be targeted to these areas (e.g. brain, immune system) in order to find specific causes and treatments. Here are a few examples of these studies:
2. The second area that I think holds promise is research into post-infectious M.E./cfs. A group of scientists in Australia led by Dr. A. Lloyd decided to look at the role of some infections in M.E./cfs. So instead of finding patients that already had M.E./cfs, they looked at people with certain infections (Mononucleosis, Ross River virus and Q fever) and followed them from the onset of their infection to see how many ended up with M.E./cfs. (I think this was a very sensible and worthwhile route to take and I wonder why they seem to be the first group to take this approach?)
By following patients from the onset of their infections, they were able to track any differences between the people who did, versus those that didn’t, remain sick after the infection. They found with all three infections, around 10% of folks ended up with M.E./cfs at six months, and it didn’t matter which infection it was. At 12 months, about 5% of folks remained ill. They looked at all sorts of factors (gender, age, psychological, physiological) and the only thing that the all the people who ended up with M.E./cfs had in common was the severity of their initial infection. This research group is now taking the research further and looking at more factors (including genetic ones) that may explain why some people remain sick following their infection.
I think both the gene expression research and the post infectious research are very hopeful and exciting areas of inquiry into M.E. I look forward to seeing whether research in these areas continues to bring insights into the processes going on in M.E./cfs.
PROBLEMS and MAJOR ROADBLOCKS in M.E./CFS RESEARCH
There are many reasons why we still don’t really understand what M.E. is or how to treat it effectively:
1. Research is a slow process. It takes a lot of money and time to understand a disease. Even when researchers do make discoveries, they have to present and publish these findings. The publishing process in research can take years alone. Then the studies have to be re-done by other researchers to make sure the findings aren’t a fluke or biased.
2. The human body is magnificent and complicated. Now-a-days scientists and researchers usually specialize in a certain area of the body which is a problem when trying to understand a complicated multi-system illness. For example, individual researchers/groups have found stuff wrong in M.E./cfs patients with regards to the brain, nervous system, immune system, stress response, antiviral pathways, blood pressure and metabolism - to name a few. But some of these problems look minor when viewed as a single entity. I think understanding M.E./cfs will take looking at the body and how it functions as a whole, not piece by piece (which is another reason why gene expression studies hold promise).
3. Diagnosis and screening. One of the major problems with M.E./cfs research relates to diagnosis. Diagnosis is by exclusion – ruling out other illnesses. Then if we (M.E. sufferers) meet a list of symptoms, we’re clumped together into a “syndrome”. So when researchers compare M.E./cfs patients to normal, healthy people they are very likely comparing a basket of fruit to, let’s say, a banana. With a group of M.E./cfs patients they could actually be looking at several illnesses all clumped together or perhaps several varieties of the same illness. In this light, how are researchers going to find specific differences? On top of this problem, there are all sorts of levels of severity within the M.E./cfs syndrome, and these severity levels are rarely taken into account when studies are done.
One example of this screening and diagnosis problem is the most recent CDC (Centers for Disease Control) study in the United States. They did a study to try to figure out the prevalence of cfs in Georgia, but they used an even looser version of the case definition (Fukunda et al.) which is usually used to select and screen patients. [We already know that the Fukunda et al. criteria for M.E./cfs gathers in a larger group of folks than the Canadian Clinical definition.] Perhaps due to this looser definition of CFS, they ended up concluding that as much as 2.54% of the population of Georgia has CFS.
While I consider it’s possible that 2.54% of Georgia folks may be chronically tired, I find it hard to believe that 2.54% of the state has the same flu-like disabling illness that I do. And it gets worse... Now if the CDC go on to use this colossal group as their cfs population in other studies, I have trouble seeing how they’re going to differentiate the group (with no doubt enormous variations in symptoms and severity) from the general, healthy public.
IN CONCLUSION…
So that’s (in brief) my take on some of the research. And I can’t deny that I still get hopeful when I read about a researcher or group that has found out another little piece of the M.E./cfs pie. But I also know that a little piece of the pie is a long way from knowing the exact cause, or developing a targeted treatment that will help sufferers understand or fight M.E. today, or any time soon.
So in the mean time, I try to make the most of my life within the constricting dictates of a powerful, elusive, invisible, illness. And perhaps I’ll get better despite the fact that we still don’t understand M.E. But my hope is that researchers understand this illness and how to best treat it soon; if not for me, then for all those people who live with this monster now or in the future.
I read so much research and sometimes I get so jaded.
I needed a way to express my thoughts on everything I read and the state of research for M.E.
I sent my article to the M.E. association of Ontario for their newsletter. I wonder if they'll use it? Anyways, I thought I'd share it with you (although it's almost four pages -kinda long, I won't be offended if no-one reads it).
QUEST TO FIND THE INVISIBLE MONSTER
My personal take on the research into M.E./cfs……….
Like many folks, when I first became ill with M.E./cfs, I was in denial. However, later when I started accepting that I was really quite sick, I was unsatisfied with the explanations given to me by doctors about what was causing my suffering. I was given a diagnosis of M.E./cfs, but I wasn’t sure if I believed M.E./cfs was a real illness, or if it was the particular illness plaguing me. I knew whatever I had was pretty serious. Hearing “chronic fatigue syndrome” I imagined someone who was tired, not someone who was extremely sick and significantly incapacitated.
Hence, my journey into research… I started to research what this M.E./cfs was all about. I wanted to understand what it was that was stealing my life away. Perhaps at some level I thought understanding M.E./cfs would vicariously allow me to wield some kind of control over the monster that was living inside me. For a while, researching became an obsession. I read every article I could get my hands on. I would sit at the computer until I was dizzy. I learnt a lot of medical jargon. I became familiar with who the researchers were. Every time I’d read a new theory or study, I’d get my hopes up that the answer was close at hand.
But now I’ve been sick for 5 years and although I still stay up to date on the recent research, it is no longer an obsession. I now understand that research is a painstakingly slow process and that M.E./cfs research is often near the bottom of the pile of importance when it comes up against other diseases such as cancer, heart disease and MS with regards to funding and proliferation. My hope with regards to research is now tempered with a better understanding of reality; both the reality of the research process and the reality of this disease in particular.
It seems with M.E./cfs research, it’s often a process of one step forward and two steps back. It’s an illness that’s been shrouded in controversy, disbelief, and by some, an almost ridiculous adherence to the false idea that it’s merely psychological. Of course it doesn’t help that the majority of sufferers are women, or that those most inspired to advocate for more or improved research (those who have M.E./cfs), are often too sick and disabled to do so. How about those who improve or even recover? Well, if truth be known, if I recover I will probably go back to living (take back my life), and try to forget this nightmare ever happened, rather than spend my time advocating. (Thankfully everyone isn’t like me).
So what’s my take on the research into M.E./cfs? Honestly, I could probably write a book about my take on the research. But it would be a long, boring, cynical, and opinionated book. So instead I will give you a very brief overview about what I think is recent and exciting in M.E./cfs research and what I think the problems are.
EXCITING, VALUABLE, HOPEFUL
For now, (since this isn’t a book), I’m just going to describe what I think are two of the most exciting, hopeful areas of research at present.
1. The first area is called gene expression profiling. There are several groups of M.E./cfs researchers studying human genes and how they are expressing themselves. Rather than looking at mutations (damaged genes), they look at how genes in the human genome are reacting (are they up-regulated or down-regulated?). They compare normal, healthy people to people with M.E./cfs in order to see which genes are being expressed differently in those who are sick. And (surprise, surprise) they’ve found genes that are differently expressed in the M.E./cfs patients. These studies will hopefully lead to a specific test for M.E./cfs. Infact one of the researchers in this area (Dr. Gow) recently requested a patent for such a test. But more importantly, when they can discover what’s actually going wrong in the bodies of sufferers, research can be targeted to these areas (e.g. brain, immune system) in order to find specific causes and treatments. Here are a few examples of these studies:
o Dr. Kerr’s group (in the U.K.) found that the differences in gene expression were related to immune response (T-cells), Neuronal functions (brain/nervous system), persistent infection with viruses, oxidative stress and the functioning of the mitochondria (the cell’s power house). Dr. Kerr’s initial study used patients that were quite ill (rather than mildly ill with M.E.). Now his group is in the process of repeating this study with a larger group - 1000 patients.
o Dr. Gow’s team (also in the U.K.) is doing similar work and has compared the entire genome!! of healthy people to M.E./cfs patients. They had similar results and state the differences in gene expression are related to infection, immunity, the nervous system, cell membrane & cell function.
o The Centers for Disease control did a similar study, but my understanding is they only looked at one part of the genome. However, they too found differences in immune system genes as well as gene expression related to the stress response.
2. The second area that I think holds promise is research into post-infectious M.E./cfs. A group of scientists in Australia led by Dr. A. Lloyd decided to look at the role of some infections in M.E./cfs. So instead of finding patients that already had M.E./cfs, they looked at people with certain infections (Mononucleosis, Ross River virus and Q fever) and followed them from the onset of their infection to see how many ended up with M.E./cfs. (I think this was a very sensible and worthwhile route to take and I wonder why they seem to be the first group to take this approach?)
By following patients from the onset of their infections, they were able to track any differences between the people who did, versus those that didn’t, remain sick after the infection. They found with all three infections, around 10% of folks ended up with M.E./cfs at six months, and it didn’t matter which infection it was. At 12 months, about 5% of folks remained ill. They looked at all sorts of factors (gender, age, psychological, physiological) and the only thing that the all the people who ended up with M.E./cfs had in common was the severity of their initial infection. This research group is now taking the research further and looking at more factors (including genetic ones) that may explain why some people remain sick following their infection.
I think both the gene expression research and the post infectious research are very hopeful and exciting areas of inquiry into M.E. I look forward to seeing whether research in these areas continues to bring insights into the processes going on in M.E./cfs.
PROBLEMS and MAJOR ROADBLOCKS in M.E./CFS RESEARCH
There are many reasons why we still don’t really understand what M.E. is or how to treat it effectively:
1. Research is a slow process. It takes a lot of money and time to understand a disease. Even when researchers do make discoveries, they have to present and publish these findings. The publishing process in research can take years alone. Then the studies have to be re-done by other researchers to make sure the findings aren’t a fluke or biased.
2. The human body is magnificent and complicated. Now-a-days scientists and researchers usually specialize in a certain area of the body which is a problem when trying to understand a complicated multi-system illness. For example, individual researchers/groups have found stuff wrong in M.E./cfs patients with regards to the brain, nervous system, immune system, stress response, antiviral pathways, blood pressure and metabolism - to name a few. But some of these problems look minor when viewed as a single entity. I think understanding M.E./cfs will take looking at the body and how it functions as a whole, not piece by piece (which is another reason why gene expression studies hold promise).
3. Diagnosis and screening. One of the major problems with M.E./cfs research relates to diagnosis. Diagnosis is by exclusion – ruling out other illnesses. Then if we (M.E. sufferers) meet a list of symptoms, we’re clumped together into a “syndrome”. So when researchers compare M.E./cfs patients to normal, healthy people they are very likely comparing a basket of fruit to, let’s say, a banana. With a group of M.E./cfs patients they could actually be looking at several illnesses all clumped together or perhaps several varieties of the same illness. In this light, how are researchers going to find specific differences? On top of this problem, there are all sorts of levels of severity within the M.E./cfs syndrome, and these severity levels are rarely taken into account when studies are done.
One example of this screening and diagnosis problem is the most recent CDC (Centers for Disease Control) study in the United States. They did a study to try to figure out the prevalence of cfs in Georgia, but they used an even looser version of the case definition (Fukunda et al.) which is usually used to select and screen patients. [We already know that the Fukunda et al. criteria for M.E./cfs gathers in a larger group of folks than the Canadian Clinical definition.] Perhaps due to this looser definition of CFS, they ended up concluding that as much as 2.54% of the population of Georgia has CFS.
While I consider it’s possible that 2.54% of Georgia folks may be chronically tired, I find it hard to believe that 2.54% of the state has the same flu-like disabling illness that I do. And it gets worse... Now if the CDC go on to use this colossal group as their cfs population in other studies, I have trouble seeing how they’re going to differentiate the group (with no doubt enormous variations in symptoms and severity) from the general, healthy public.
IN CONCLUSION…
So that’s (in brief) my take on some of the research. And I can’t deny that I still get hopeful when I read about a researcher or group that has found out another little piece of the M.E./cfs pie. But I also know that a little piece of the pie is a long way from knowing the exact cause, or developing a targeted treatment that will help sufferers understand or fight M.E. today, or any time soon.
So in the mean time, I try to make the most of my life within the constricting dictates of a powerful, elusive, invisible, illness. And perhaps I’ll get better despite the fact that we still don’t understand M.E. But my hope is that researchers understand this illness and how to best treat it soon; if not for me, then for all those people who live with this monster now or in the future.
I'll be back to read more 
great work
