XMRV: Is It Time to Leave 'Chronic Fatigue Syndrome' Behind?
The XMRV Discovery Series
People with chronic fatigue syndrome have waited for decades for their condition to get the attention and respect it deserves, and for a name change that would give them more credibility. Is the XMRV discovery what everyone has been waiting for?
The researchers behind the XMRV research have already coined a term for conditions related to this retrovirus -- XAND, which stands for X-Associated Neuroimmune Disorders. It certainly sounds more serious and more reflective of what's going on in the body, if this and other viral research holds up.
The Search for a Name
The name "chronic fatigue syndrome" is so despised by patients, advocacy groups and the doctors/researchers usually considered the "good guys" that several other names have cropped up over the years. CFIDS, or chronic fatigue and immune dysfunction syndrome, is one that's hung around for quite awhile. More recently, ME/CFS or CFS/ME has become more popular (with ME standing for myalgic encephalomyelitis, which is what the condition is called in the UK.)
The problem with the name is that "fatigue" is both vague and something that everyone experiences at one time or another. A "syndrome" is generally perceived as something less serious than a disease, something psychological, or something that's overly hyped. You put these two words together and people thing, "Big deal, you're sleepy a lot. Who isn't?"
When it comes to names like CFIDS or ME/CFS, however, the overall medical community says there's not enough conclusive evidence behind the names. That's kept them confined to inner circles, where we're basically preaching to the choir.
Will XAND Be Different?
Of course, the first study to suggest a link is never the final word. We've got a long way to go before this work is validated by others and becomes accepted. However, if other researchers do find that people with ME/CFS really are infected with XMRV in overwhelming numbers, it could go a long way toward getting a new name established.
The CDC is a major barrier to a name change. It has long refused to consider ME/CFS a possible viral or immunological condition, and it's using research inclusion criteria that some researchers say includes people who have primary psychological issues and not ME/CFS. Dr. William Reeves, who heads the CDC's chronic fatigue syndrome department, has already cast aspersions on the research, saying he was surprised the prestigious journal Science would publish it. He was quoted in the New York Times as saying, "We and others are looking at our own specimens and trying to confirm it. If we validate it, great. My expectation is that we will not."
In my opinion, it's unlikely that the "chronic fatigue syndrome" diagnosis will ever fully disappear. Instead, I see something else happening:
- We'll get a diagnostic test (again, assuming this work is validated) clearly showing a retroviral infection.
- Symptomatic people testing positive for XMRV will be diagnosed with XAND.
- People who don't test positive for XMRV and do fit CDC criteria will continue to be diagnosed with chronic fatigue syndrome.
The real key, beyond validation, is the diagnostic test -- something the Whittemore Peterson Institute is already working toward. At some point, the CDC will be unable to ignore the research any longer, but perhaps it can save face by acknowledging something completely separate from what it's been researching all these years. To me, it appears Reeves has been working on a kind of abuse-related fatigue. It may be a very valid condition, but it's not the same as ME/CFS.
What do you think is in store, as far as the name of the condition goes? How would it feel to tell people you have a neuroimmune disorder instead of chronic fatigue syndrome? Do you think this kind of name change is more likely than a universal adoption of ME/CFS? Leave your comments below!
Also See: The XMRV Discovery Series
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We do need a better name. Chronic fatigue syndrome does sound made up. That’s one reason why when I need to tell people about my condition I prefer to say that I have fibromyalgia and leave it at that (and yes, I am diagnosed with both specifically) — not that fibromyalgia is taken much more seriously.
But XAND? Sounds like a science fiction book to me. Still, it is better.
Unfortunately, the neuro- part still needs a bit of explanation because there are a lot of people out there that think that neurological problems are the same as having a mental disorder like depression or hypochondria. Granted, maybe there ISN’T that much difference between “mental” disorders and neurological ones (as mental disorders keep turning out to have a physical basis), and one can have a problem with your head without it meaning that it’s “all in your head”. But, frankly, while I don’t want to throw people with mental disorders under the bus, it still doesn’t help the stigma for our disease to be associated with theirs right now.
And anyhow, IS it anymore neurological than, say, the flu? I say that because I was reading what one doc wrote about it being a “mind body” illness and when people questioned whether he thought AIDS was a “mind body” illness he pretty much admitted that, yes, it was — but that so were MOST diseases in that there are effects back and forth.
I think a good name would emphasis the viral and immune deficiency aspects. Unfortunately, “human immunodeficiency virus” and “acquired immune deficiency syndrome” are already taken. Seeing as there are similarities, I don’t think it would be too much to ask, though, for a similar name that makes similar sense.
Whatever it’s called, it makes life a living hell and if XMRV turns out to be the culpret of my misery and everyone else’s in my shoes, then it’s great news that we’ve finally stumbled on the cause. The treatment hopefully is the next step.
Healthy people have absolutely no idea how hard life is with Chronic Fatigue. And I must confess I’d probably discount it too if I had never had it. I have big dreams, aspirations, goals, I want to accomplish a lot in life. But my body is just not up for it. Over the years it gets depressing, and then the doctors use that against you, saying that’s what’s been behind it all along. I have deep anger towards these doctors who are in a position to help and they discount everything we say. They are not the least bit curious as to why we’re experiencing something so strange.
Why is it that the medical profession is so arrogant that any illness they’re unable to understand must automatically be a psychosomatic “syndrome” (and especially so if the patients are primarily women)? Actually, in my own experience, doctors have come a long way in the 25 years since I first developed CFS. But the government health agencies seem to have lagged far behind in their attitudes towards patients with CFS and fibromyalgia.
I recently gave a donation to the Whittemore-Peterson Institute, and I’m hoping others with CFS and fibromyalgia will too. I believe the two illnesses are very closely related — probably variants of the same disease. I’m hopeful that we’ll have the cure that we need in the next five years or so.
But that will never bring back the 25 years of my life that I’ve already missed and the coming years I’ll continue to miss. I’ve been alive in this body but not much else for all these years. Thankfully, I do have some close family who have been supportive and understanding, even though they couldn’t possibly know what it really feels like inside this painful, exhausted body.
At least there’s a lot of hope for those of you who haven’t had to suffer for so many years like I have.
Good Night and Happy Halloween!
Just wanted to share a recent experience with you all. What ever it is called there are many who discount the validity, I called the Mayo clinic to follow up on an application for an appointment application filled out on line. I was told in a very abrupt manor that “We do not treat that here” What the hell? I had heard wonderful things about Mayo.
This may have been an act of desperation but I refuse to accept my doctor’s recommendation to retire, go on disability and accept that this is now my life.
Thanks, Chris
I don’t know if you know this and left it off for brevity or if you don’t know that another proposed name was neuroendocrine immune dysfunction, or other similar names.
Guide Response: I wanted to stick to names currently in use, since there have been so many proposed over the years. CFIDS, ME/CFS and CFS/ME are the ones people are likely to come across.
My God. We are really having recognition. It´s true. . I am getting it slowly. For 20 years I have been seen as the lazy, lousy self-indulged bastard. Wrong diagnosis, misunderstandings, distant family and fed-up friends are my story. I feel like an survival-hero now. My self-esteem and self-image is . . more REAL and FREE. I thing XAND is great. I would never have imagined what has happened the last 2 weeks and that all this is happening. Not in my wildest dreams. I e-mailed my family a 5 page report few days ago with thorough info on XMRV along with my personal associations to the discovery. Some eyebrows have been raised. I feel relieved in my little, modest but cosy apartment, where I live 75% of my life through my phone, computer, reading and studying and watching TV (a lot of remote-control here) And. . lot´s of love Adrienne. I think you are doing a good job. I like your perspectives, especially when you show a personal edge. And you are quick to update
. . and love to all XANDs.
“XAND, which stands for X-related Neuroimmune Disorders.”
I think XAND stands for “Xmrv-Associated Neuroimmne Disease.” I like it, and I like your column.
Guide response: Thanks Myrtie & others for pointing out my error. That’s what I get for blogging in a fog! Would that be called “flogging”?”
It would be nice if it was something a bit easier to say. : ) How does one say XAND? Is it “gzand”? Or “eks-and”?
What would be helpful is a name that gives a sense of what the disease is like. But I’m not sure what that would be.
I’m like Liz in that I tell people I have fibromyalgia rather than CFS (I have both), only because “fibromyalgia” sounds more like a disease.
Maybe what we need is a CFS sufferers empowerment campaign, give ourselves a pride name, the same way gays embraced the word “queer”, which was originally thrown at them as an insult.
If MY current doctor is any indication, a name change will make no difference!!! After suffering 20 plus years with fibromyalgia and then CFS, I am back to square one with doctors. NO one acknowledges either disorder here. My current doctor says if I don’t get moving more, I will atrophy!!! I’m so depressed and spending more and more time in bed. Depressed, hurting and OH-SO tired! I live in a town where there are no doctors taking new patients. A dead-end . I am 74 .
XAND? Will It be pronounced “Zand”? Hmmmm….rhymes with “sand”. I think I’ll stick with Neuroendocrine Immune Dysfunction (NID?) like Tina mentioned.
PLEASE rename this. CFS gets no respect. I would rather use ME, XAND or Neuroimmune Disorder than CFS/CFIDS. I get more respect (only slightly) if I say fibromyalgia (and I do have both).
I detest the CDC with every fiber of my being. I will never trust anything they have to say. Anyone who says this isn’t real–tell you what, let’s inject a vial of my blood into your body. Who’s up for that?
I’ve been diagnosed with this disease CFS since 2002 and have rarely been in front of a doctor who agreed with the diagnosis preferring their own “diagnosis” primarily the “all in the head” kind. Reading the above comments are just like reading the thoughts in my head.
The having goals and aspirations though being “stuck in this body” I’m barely able to meet my daily care needs. The non-existent social life, the pain the fatigue, and lets not forget the cognitive degradation is something that has to be dealt with on a daily basis. However, I surely feel better than I did on the day I was diagnosed.
Not because of a magic pill or CBT or exercise – but simply listening to my body, unerstanding my disease, and resting my weary body when it requires.
Pre-diagnosis I did what I usually did whenever I felt ill – I tried to exercise my way out of it which only intensified the symptoms. I never knew what CFS was when I was trying to find out what was going on with my body as I knew it couldn’t be CFS because it was so much more than simple fatigue.
However when I was diagnosed and I went home and punched in CFS into the computer I was astounded that I was the perfect match for what was only named something to do with “fatigue”.
So my life changed, I lost just about everything I had that was near and dear to me and all I could do was to painfully sit on the sidelines and watch the destruction take place. It’s a horrible way to live!
At 54 I don’t see a cure suddenly making me “whole” in my lifetime. I just put one foot in front of the other each day and take life in stride as I sit on the sidelines emotionless (any emotion even good has to be diminished as potentially stressful).
I’m not a whiner – never have been refuse to ever be! In my mind I still want to be productive wholeheartedly – yet my body has the final say regardless of what “I want” to do. In other words in my “retirement” I’m not allowed to do any of the things I thought I’d be doing.
I still have but one passion left and that’s photography and though it takes most of my energy when I’m able to go outdoors and take pictures I’m holding onto this passion by my fingernails as once I’ve lost this passion what’s left?
Dr. Montoya at Stanford has been using “Virus Induced CNS Dysfunction” to describe a subset of CFS patients with high titers that could very well have been the result of a retrovirus like XMRV. Like HIV and AIDS, I like XAND and Virus Induced CNS Dysfunction. In both cases there is a separate term for the retrovirus and the active disease state.
Congratulations to all of us for getting through another day! WE ROCK.
I have suffered from chronic fatique and chronic pain since 1982 after I had a hysterectomy. I have tried more doctors than I can count on both hands. I tried to get someone to tell me what was wrong with me and believe that I even had anything wrong with me let alone find something to alleviate the pain, depression and fatique. Finally in 2004 I was diagnosed with Fibromyalgia and Hypothyroidism, I was patted on the back and sent home with a battery of drugs that made me feel more tired and depressed than before. It was a relief to at least have a diagnosis. I have had a hard time finding a doctor who is willing to let me choose which drugs I am willing to take and which side affects I am willing to live with. Recently I have been prescribed Lyrica which will cost me $80.00 per month and my insurance doesn’t cover it. I am expected to be on this long term. It doesn’t alleviate the pain but I do get a better nights sleep, I’m not sure if it is worth it. I am so depressed at this point that I don’t know if I can go on. I feel like I am being punished for having a disorder that most doctors still believe is in my head. I am over 50 and can not afford to retire but find it hard to get myself out of bed and to work each day. It’s nice to know that I am not alone anyway. I wish you all the best and pray for a cure and more understanding for us all.
Cheri,
Talk to your doctor about dopamine agonists (mirapex, requip, neupro patches if you’re lucky enough to get them). They worked well for me for the pain. I’ve stopped taking them, but only because my pain is manageable at this point and I try to take as few drugs as possible. If it comes back, I’ll go back on them.
If you take the pills, take them at night. That way you can sleep through side effects. They made me feel like a drunk sailor. And watch your weight while you’re on them I’m prone to weight gain on meds and they made me feel like I could eat a cow. But I hear that is a very rare side effect (other rare, and I stress rare, side effects include compulsive gambling or nymphomania — so just be aware in case you see any signs so you can stop).
If you read some of the texts from the institute and from the testing facility they are working with to provide tests for XMRV you will see that a lot of the texts are based on a variety of assumptions about the illness.
They talk definitively about the fact that CFS is primarily a immune-based disorder, when the major body of evidence suggests that its actually a neurological disorder effecting the central nervous system and blood circulatory control.
Secondly they state as fact that nitric oxide is elevated in CFS – there is actually no scientific published evidence that this is the case, and in fact Stewart et al suggest otherwise.
FInally, they state that Lymphoma is a potentially devastating complication of CFS – there is no published information on this either.
In my opinion these guys have approached CFS based on a variety of preconceptions about the illness- preconceptions dont equate to good science and in time my fear and suspicion is that this will be too good to be true.
I would like to say something about the new coined term “XAND”.
As it turns out both Autism and CFS/ME are XMRV Associated Neuro-Immune Diseases, and perhaps there are also other Neuro-Immune Diseases out there, other than Autism and CFS/ME, that may also turn out to be a XAND-disorder. We do not yet know for sure in which exact way XMRV is related to CFS/ME, nor to autism, nor to prostate cancer, nor to perhaps other unknown diseases. So it’s important to stick to the terminology. Otherwise people in the end will not know anymore what we are talking about. There is nothing wrong with the term Myalgic Encephalomyelitis, to the contrary. So, I would like to suggest we never drop that term. By the way, imagine you have autism since you were a child, and on top of that you have CFS/ME since the beginning of your adult life, then all of a sudden you would no longer remain with two, but with only one diagnosis, and you would no longer have autism nor CFS/ME, but XAND, which is what you would get, if you were to apply this newly coined XAND terminology. Someone with Autism and CFS/ME should have two diagnoses, being e.g. Asperger’s and CFS/ME, both being clearly two different entities, however related they may turn out to be. By the way, anybody out there having both Asperger’s and CFS/ME ? I know someone, who does. For more than two decades now.