My name is Catherine Morgan, I'm a writer, nurse, and mother. I'm also living with Chronic Fatigue Syndrome and other chronic illnesses. I hope this will be a site where patients, family, and medical professionals can find information, ideas, inspiration, and hope.
Last week I was reading a lot about the latest research linking Chronic Fatigue Syndrome (CFS) to the XMRV Retrovirus. Some of the articles even implied that people suffering with CFS (like myself) should be excited at the possibility that this news could lead to better diagnosis and treatment of CFS. But, it’s not exactly good news for CFS patients, especially for patients hoping for a cure. Here’s why…
While finding a virus linked to CFS may sound promising – Just cure the virus and you cure the disease. It’s much more complicated than that. The virus being linked to CFS is a retrovirus, it’s not the sort of virus we can just throw some anti-viral medicine at to get rid of it. It’s a complicated process, but it goes something like this – Ordinary viruses attack a cell and eventually kill it during it’s process of spreading to other cells. Retroviruses don’t just spread they also mutate the cell (without killing it), so mutated cells go on to replicate and spread the virus as well as the cell mutations. So the cell mutation part is what makes this type of virus more difficult, and why we are hearing it compared to the HIV virus (another retrovirus). But this is only one study, there will need to be many, many more studies before we have any definitive answers.
While I appreciate the fact that CFS is finally getting the attention it deserves, there is still a lot of research to be done. This retrovirus finding is a very important “key” to unlocking the truth about this debilitating disease. However, I don’t necessarily see it as the smoking gun. Granted, I’m not a scientist, but I do have my personal experience with this disease (and the medical background of a nurse), and this is my first impression about these latest findings…
Chronic Fatigue Syndrome is a disease that (among other things) weakens a person’s immune system. So this finding of a specific retrovirus being found in a large number of CFS patients is a classic “what came first the chicken or the egg” scenario. Did the weakened immune system create the perfect petri-dish for this virus to exist? Or did this virus contribute to the weakened immune system? The bottom line is – There is much more research that needs to be done before we can get the answers we are looking for. I do hope that these new findings can at least put to rest any idea that CFS is “all in the head” of the patient.
I actually had a neurologist tell me a few years ago (to my face) that he did not believe in my diagnosis. If that’s not bad enough, when I called him on it, and asked if he thought my symptoms were all in my head…He told me that I probably had MS (multiple sclerosis) and it just hadn’t been able to be diagnosed yet. What? This “so called” medical specialist was so against acknowledging that chronic fatigue syndrome could exist, that he actually had the nerve to “pre” diagnose me with a condition that I had already been tested for and told I did not have. Explaining that “if” my symptoms were real, then I would have to eventually be diagnosed with a “real” disease. I’m not a violent person, but I REALLY wanted to punch this man freak in the face…I think he graduated from the Doctors for Dummies School of Medicine (and that’s all I’ll say about that).
OK…Sorry for the rant, I’ll get back to my feelings on this latest research now.
Don’t get me wrong, I am ecstatic that there is finally some actual scientific research being done on chronic fatigue syndrome. I was beginning to wonder just how long doctors would be allowed to get away with making personal judgments on whether or not to “believe” in a CFS diagnosis (a diagnosis that is already accepted by the AMA and CDC).
I hope these latest finding will (at the very least) help educate both the public and the medical community, that this is a real disease with real symptoms that need to be treated–not ignored. This is from a statement I wrote for the Chronic Fatigue Syndrome Advisory Committee that met in Washington D.C. (in May of 2007), and I believe it is still relevant today…
Being a single mother is not easy under any circumstances, but being a single mother with Chronic Fatigue Syndrome has been particularly difficult. I have been suffering with this insidious cluster of debilitating symptoms (referred to as Chronic Fatigue Syndrome), for over ten years. But it has only been more recently that I have come to accept that this condition isn’t going away. The funny thing is, even though I am caught in the middle of mourning for the person I might have been, and accepting the person I am, I’ve begun to feel hopeful. Hopeful because, by letting go of the burden of needing to be cured, I am also letting go of the idea that if I just got more sleep, or got more exercise, or took the right combination of medications, or found the right doctor, that somehow I would be better. This thought process is exactly what keeps someone with Chronic Fatigue Syndrome down. It puts a judgment on them, that they are somehow responsible and this is not true. So, letting go of this type of destructive thinking is half the battle with this disease. And I think that is why this type of awareness (that is being done here today) is so important.
I believe we can all agree on the importance of research so that a diagnostic tool can be found, and a treatment developed. However, what is equally important, but continues to be overlooked, is the acceptance by doctors that this is a “real” medical condition and not an “emotional” problem.
Are many people with Chronic Fatigue Syndrome depressed? Of course they are. Anyone suffering from a chronic debilitating medical condition, is most likely going to have some degree of sadness, anxiety, or depression associated with it. A physician wouldn’t dream of telling a patient with Lupus that depression is the cause of their disease, but surely there are many patients with Lupus who are also depressed. And by all means, depression, whether associated with Chronic Fatigue Syndrome, or any other medical condition, needs to be addressed and treated. Depression is a symptom associated with this disease, not the cause of this disease. By “blaming” this disease on depression, or any other “emotional” disorder…Well, that is simply “blaming” the patient for their disease, and that couldn’t be farther from the truth.
The truth is, doctors become doctors for the same reason I became a nurse, so they can help people. And, I think doctors feel helpless when they have a patient that they can’t “fix.” Herein lies the problem. Patients can not, and should not have to WAIT to receive compassion and treatment from their doctors, until scientific research has found a way to cure them. Just as I have come to accept my condition, doctors must come to accept this condition and treat the patients and their symptoms accordingly.
There is so much a doctor can do to help a patient with Chronic Fatigue Syndrome. The most important is to accept them and their diagnosis. Don’t tell them you don’t believe in the diagnosis. What purpose does that serve, other than to degrade them? Second, do not pass judgment on the patient for their condition. Treat patients with Chronic Fatigue Syndrome the same way you would treat anyone else with a chronic medical condition, with respect and dignity. We are not just patients with Chronic Fatigue Syndrome, we are human beings. Third, work together with the patient to address the specific symptoms of their disease. It doesn’t matter what you call this disease, a physician CAN treat the patient and their symptoms regardless of what the name of the disease is. A physician CAN treat the patient and their symptoms regardless of whether research has found a cause or cure for the disease.
These are simple things, that could be implemented right now. Today is what matters to us. Today is all any of us have. Help us get through today, then tomorrow, and then help us take one day at a time towards being as well as we can be, given our disease. If you can do that, you will be making a huge difference in our lives… Anything less, is tantamount to “doing harm”. So please – Do No Harm – that is all I ask.
So…That’s what I think about it, and I’ll step off of my soap-box now. I would love to know what you think in comments.
Here is a video from the 2006 Awareness Campaign by the CDC designed to inform physicians on the treatment of patients with CFS (obviously my neurologist wasn’t in attendance)…
I don’t normally recommend products on my blogs, but as a person suffering with chronic illness I know how important it is to share information that could benefit others. I started using these products about a year ago, in the hope of boosting my immune system, and increasing my energy. I believe it has done both of these things and more, I just feel so much better on the days that I use this product than on the days I don’t.
This product has the potential of benefiting your health in so many ways…And for anyone looking to generate an income, the company also offers a very simple way to do that too.
These products have really increased my quality of life.
It’s by a company called Isagenix. They have many products but I’ve been using three.
The first one is a nutritional shake. They come in Vanilla and Chocolate (and they actually taste good). Even though it is “technically” a meal replacement, I often use it as a supplement between healthy meals.
The shake contains 23 grams of the highest quality New Zealand whey and casein protein from grass-fed cows with no added hormones or antibiotics, as well as filling fiber, calcium and vitamins to support the body’s vital functions.
This perfectly balanced shake also contains Ionic Alfalfa™, our proprietary blend of 70 super-charged minerals, trace minerals and alfalfa juice. Active enzymes in each serving helps maximize the absorption of key nutrients.
Collected here are the top 10 most frequently provided answers to question number 22, “What is the one thing you’d like your family/friends to really understand about CFS?” Responses were limited to 100 characters, and some were stated using different words, but I’ve tried to capture the “essence” of the most consistent responses with a few direct quotes as well.
CFS is real. “I’m not making this up.”
“My symptoms are very real even though you can’t see them.”
“I am sick with a real disease and I’m doing the best I can.”
It is very debilitating and disabling. “CFS is as disabling as HIV, cancer and MS.”
“Staying at home is not a ‘fun vacation from reality.’”
“CFS is absolutely life-altering.”
The fatigue is very intense. “It’s more than being tired.”
“My energy is very limited.”
“I understand you’re tired, but it’s not the same as CFS.”
Looks can be deceiving. “I don’t look as bad as I feel inside.”
“Even when I look good, I feel awful.”
“Just because I look okay now, know that I’ll pay for it later.”
CFS is unpredictable. “I don’t know from one day to the next how I’ll feel.”
“I have no control over how I feel.”
“I need to be flexible in planning things.”
It has nothing to do with being lazy. “I wish I could accomplish more each day than I can.”
“Even simple things are often beyond my ability.”
“I’m not trying to get out of doing something when I say I can’t.”
Words don’t do CFS justice. “There’s no way to accurately describe how bad I feel.”
“I still hurt as badly 20 years later as I did the first day I got sick.”
“Even when I don’t talk about it, I still feel sick.”
CFS is very isolating. “I am often lonely and alone.”
“Life moves on without me.”
“Nobody understands what I’m going through.”
Your understanding is important. “I am so grateful for my family’s support.”
“I am very lucky to have their understanding. It makes life bearable.”
“I still need quality life experiences and to be involved.”
CFS is not a choice. “I don’t want to be this sick.”
“I miss the person I used to be.”
“It’s so sad to miss out on so many things in life.”
Consider sharing this list with the people in your life whose support is important to your well-being. Maybe it will start a dialogue that helps deepen their understanding of what it’s like to have CFS.
Should there be a ban on Vicodin and Percocet? Darvocet or other narcotics containing acetaminophen? What about over-the-counter medications with acetaminophen?
This is what I think…
We can’t just ban every medication that has serious problems associated with overuse. It seems to me that educating people who are taking these medications would be more helpful, than making them totally unavailable.
A Food and Drug Administration advisory committee met late last month to review the actions the agency could take to reduce accidental acetaminophen poisoning. The drug, also found in over-the-counter cold formulas and pain-relieving prescription favorites Vicodin and Percocet, is the most common cause of acute liver failure in the U.S.
In acute liver failure, the organ fails quickly, sometimes in 48 hours, as opposed to the more usual forms of liver failure, caused by disease or alcoholism, which can take years to develop.
I just don’t think banning medications with acetaminophen in them is the answer. And I think this whole controversy is just exacerbating the stigma associated with chronic pain and the use of therapeutic doses of narcotics.
Do you suffer from a chronic illness with no known cure? Like Multiple Sclerosis, Lupus, or Chronic Fatigue Syndrome? If so, you probably wish every day that you could find a cure and finally be healthy and well.
Why is it that just about every illness without a medically proven cure, has loads of people “claiming” to know the cure? Not only is it disingenuous to promote cures to desperate people suffering with chronic illness, but it also minimizes the seriousness of these conditions.
For instance, I have Chronic Fatigue Syndrome (CFS), and many people believe the cure for this condition is as simple as getting more sleep (and oddly enough, more exercise). Guess what? CFS has nothing to do with how much sleep someone gets, and exercise often exacerbates Chronic Fatigue Syndrome. There is no cure for what I have, but the Internet is full of sites that claim to have “sell” the cure. Don’t get me wrong, I believe that there are many alternative modalities of healing that can benefit the symptoms of this disease, but they should not be mistaken for (or touted as) cures.
Dating and Chronic Illness: Is it possible to be in a relationship when you are chronically ill? (cross-posted at BlogHer Health & Wellness)
As a person living with chronic illness, I was intrigued to read a post on dating with fibromyalgia. I can totally understand how complicated relationships can be – especially when you are living with an illness that isn’t easily recognizable to the average person (an invisible chronic illness). It seems to me that “dating” isn’t the problem, it’s trying to have a “relationship” that can become complicated.
I can totally relate to this post and how in the beginning of a relationship people may see us differently than who we really are. And let’s face it, we want to be that person they think they see. In many ways we truly are that person, but chronic illness steals are ability to stay that person.
KEEPING A PERSONAL MEDICAL JOURNAL — by Catherine Morgan – (cross posted at Catherine-Morgan.com)
Whether you are suffering from a chronic illness, pregnant, or just getting older. Keeping a personal medical journal, is important, and can really come in handy. Some may want to do this on a weekly or monthly basis, others on a daily basis, this will depend on the severity of your health issues.
STEP ONE: Just go out and get a notebook that you can use for this purpose alone. This journal will be helpful to you, as well as the medical practitioners you are working with. Especially, if you move, need to change doctors, or are hospitalized. Which reminds me, if you go on vacation, or extended holiday, bring your medical information with you, it will make it much easier if you need to see an unfamiliar physician, or be hospitalized.
Is stress wearing you down? Are you worried about the bad economy? Your job? The mortgage? Your health? Your family? If so, you are not alone.
Life is always changing, and that can feel very stressful. But often, seemingly bad things will happen in our lives, that will actually turn out to be the catalysts to something positive. It’s very true that when one door closes another will open. Although it never feels so great when that one door closes. Recently I’ve had several doors close on me. But as hard as it’s been, I can already see that these things needed to happen to bring me closer to where I am meant to be.
There are three things we can do to help relieve the stress in our lives…
Number one is acceptance. We need to accept that life does not always go the way we perceive to be best.
Living Well With Chronic Illness – Redefining Yourself – by Catherine Morgan
This issue is so important, and that is because; When you suffer from chronic illness, although you are being treated (even successfully), going back to your former life before you were sick may be impossible. I hear this all the time from others suffering with CFS and FM, and I am certain it holds true for many others suffering with chronic disease as well. The biggest problem, is that many of us “define” ourselves through our work, or what we do for a living. Quite frankly, this is a bad idea even if you are a healthy person. None of us “are” our work. Our work is not who we are, it’s simply what we do. But, we all know it doesn’t always feel that way, especially when out of nowhere, we are unable to do what we do.
So….What do you do, when this happens to you? Well, it’s not so different than when a stay at home mom sees her last child off to college. They call it “Empty Nest Syndrome” for her, and it can be quite devastating for a women who has devoted her life up until then (usually at least 18 years or more) to being the best mom she could be, and doing it as a career. Now she is left with no-one to mother, and she loses her sense of “self”. At this point, she can choose to except her new life and find new and exciting things to do with herself (maybe go back to school, get back into a career, take up a hobby, or maybe travel), or she can choose to be sad and depressed and feel like her life is over because she has no-one left to take care of. It’s not the same as losing your identity due to illness, but it is an example of seeing your life (or identity), as half full or half empty.
CFS is a multi-system disease which causes extreme fatigue, muscle weakness, cognitive dysfunction, hypersensitivity, orthostatic intolerance, digestive disturbances, depression, poor immune response, and cardiac and respiratory problems. According to the CDC, studies show that disability in CFIDS patients is comparable to multiple sclerosis, AIDS, lupus, rheumatoid arthritis, heart disease, end-stage renal disease, and chronic obstructive pulmonary disease. Yet, studies have shown that patients diagnosed with “Chronic Fatigue Syndrome” are not taken as seriously as patients with the same symptoms but a different name for their diagnosis. Thus, the name CFS not only affects the quality of treatment patients receive, but the amount of money committed to research! PWCs deserve to be taken seriously, to have a name for their illness that preserves their dignity, and to receive appropriate medical care! Spread the message — CFS: Change the Name!
*If you have Chronic Fatigue Syndrome exercise can be very difficult, and extreme moderation may be necessary. Always check with your doctor before you begin an exercise program.
I thought I would take tonight’s post to do a roundup of some of the great fitness blogs on BlogHer. I took some time and surfed the Health and WellnessBlogHer Blogroll (I also used BlogHers new search tool), and here are fourteen of those blogs. Do you blog about fitness? If so, leave you link in comments.
Could you or someone you love be at risk for a fatal medication error? It’s more common than you may think. [cross-posted at BlogHerHealth and Wellness]
Healthy Living: Can Yoga Help Reduce Symptoms of Chronic Illness? — by Catherine Morgan (cross-posted at BlogHer)
Back in March, I told you about yet another invisible illness that I’ve had the pleasure of being diagnosed with. Fibromalgia. It was also at that appointment where I learned of the 20+ pounds I had put on in less than a year. And it wasn’t like I was at my ideal weight before that time either. For the first time in my life, I actually weighed more than I did when I was pregnant. It was then that I decided I must begin to take eating healthy more seriously. Aside from not being able to fit into my skinny jeans, the extra weight was exacerbating all of my invisible medical problems.
Since then I’ve lost about fifteen pounds, and I’m starting to think there might be a chance that I’ll be able to finally get back down to my ideal weight. The main problem I’m facing now, is my inability to exercise. It’s not that I have an aversion to exercising, it’s because I also have Chronic Fatigue Syndrome (here are some videos that might help you understand), and one of the most devastating symptoms is something called post-exertional malaise. Basically, even though I need to exercise to be healthy and lose weight, just a little bit of exercise can make my fatigue and pain much worse.
I know that yoga would be the best type of exercise for me to try, and I’ve always wanted to try it. But, up until now, I thought yoga was the type of thing that would be too difficult to learn how to do on my own. And then I came across a book on yoga, that was written specifically for people with Fibromyalgia. I was a little skeptical at first, but I was also ready to give something new a try. So, I emailed the publisher, and asked them to send me a review copy of Yoga for Fibromyalgia: Move, Breathe, and Relax to Improve Your Quality of Life by Shoosh Lettick Crotzer.
Fibromyalgia: An Invisible Disease? — by Catherine Morgan (cross-posted at BlogHer)
I try not to be a complainer, but last week I was seriously not feeling well. I actually resorted to sending a message to the other women in my community to ask for help (and I’ve never done that before).
I thought I would take tonight’s post to talk about what was wrong with me last week, because I know many women are suffering with the same problem.
Grieving For The Loss Of The Person You Once Knew — While Learning To Be The Person You Have Become – by Catherine Morgan
There comes a time in every fight, where you have to wonder what it is you are fighting for. In the case of chronic illness, I thought I was fighting to take my life back. I thought I was fighting to find a cure for myself. I thought I was fighting for the right combination of medications to help me lead a “normal” life again. I was fighting, fighting, fighting…..until that one day when I realized, I was fighting a losing battle. No matter how much I fought, I was never going to get my life back. No matter how much I fought, I was never going to be “normal” again. I actually even fought myself at this time, to not give-up the fight. I thought that if I admitted failure, I was letting the disease win. But the truth is, that as with most fights, the toll the fight takes on you emotionally is much worse than the fight itself.
It’s the last day of 2007, and I thought I would do this post on some of the hot topics from BlogHer Health and Wellness. So, in no particular order, here is what I think are the top ten. — read the full post at BlogHer.
People who have chronic fatigue syndrome have been tireless in their quest to be acknowledged.
It has been 20 years since the first advocacy group was formed, and almost 20 years since the U.S. Centers for Disease Control and Prevention defined the diagnosis. Despite that, during the decades since people with CFS still were told their disease didn’t exist or it was all in their head.
Now, although many people with the crippling condition are glad that doctors will say, “You have chronic fatigue syndrome,” they are dismayed that what follows is usually, “There’s nothing I can do for you.”
One of the hardest aspects of CFS is the isolation and loneliness. McCleary, of the CFIDS Association of America, says about 25 percent of people with CFS become unable to work.
I made my very first YouTube video for the 10 Questions project. I hope you will take a minute to go over and vote for my video…There is no registration required (you don’t even have to give you email address), just click on the green thumbs-up link.
It seem that Oprah has ruffled a few feathers while explaining her recent bout with thyroid problems. Some are saying that she is just using a thyroid problem as an excuse for a recent 20 pound weight gain. Others find her method of treatment [a one month trip to her Hawaii estate for total relaxation and healthy eating] to be a bit grandiose, and not exactly a treatment available to the average woman with thyroid disease. And then others are a bit taken back by her “expert” Dr. Northrup, and her attempt to blame the patients (mostly women) for their thyroid disease.
