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 retro virus, 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)…