Chronic fatigue syndrome (CFS) is one of those nebulous diseases that's really more of a diagnosis of exclusion than anything else. As the name suggests, it's characterized by overwhelming fatigue--often so much so that patients can barely get out of bed--as well as a number of non-specific symptoms, including weakness, muscle pain, and insomnia. Currently, there is no diagnostic test for the disease, and the cause(s) is (are) unknown. Indeed, it should be noted that there's disagreement over even the most basic assumption that such a thing as CFS exists, or whether it's merely psychosomatic. However, a number of lines of evidence (including high antibody titers in many patients) point to an infectious agent as at least a co-factor in the development of the illness, and the Epstein-Barr virus (EBV, which also causes infectious mononucleosis) has been frequently pointed to as a possible causative agent. (Another common herpes virus, HHV-6, has also been investigated as a cause). However, the epidemiology of EBV has made it difficult to study this potential connection using traditional study designs. More on this after the jump.
EBV is a member of the herpesvirus family. Like many herpes viruses, EBV is extremely common; it's estimated that almost all of us have been infected by the age of 40. This makes it difficult to employ a typical study used in epidemiology: the case-control study. In this example, we could look at the presence of antibodies against EBV in the blood of those diagnosed with CFS versus healthy controls. The problem with this is that such a large number of the controls will also have EBV antibodies, it's much more difficult to tease out differences between the two populations. Investigators have, however, looked at the amount of antibodies present, and have found (in some papers) that those diagnosed with CFS tend to have higher anti-EBV antibodies than healthy controls. (However, some publications have found no such connection). This could also be due to the fact that, as I mentioned, CFS is a disease of exclusion--if you have the symptoms of CFS, and don't have any of the other common causes of long-term fatigue*, then you get lumped into the CFS group. The problem, from an epidemiological standpoint, comes in if CFS isn't just due to one cause--what if it's due to multiple causes, or even multiple viruses?
This is much more difficult to sort out, but some researchers are going ahead and testing the first, and more basic, premise: might CFS be caused by a virus? They've done this by treating CFS patients with antiviral regimines:
Montoya now has data on 25 CFS patients, nearly all of whom had high levels in their blood plasma of antibodies to the human herpes virus 6 (HHV-6) and the Epstein-Barr virus. The data -- presented recently at a conference in Fort Lauderdale, Florida -- were remarkably consistent. Nearly every patient responded to the drug, Montoya said, and most of the responses were dramatic.
Last year [CFS sufferer Michael] Manson began a six-month course of Valcyte, which is approved to treat transplant patients to prevent viral infection. At first he felt worse. Then, after a few weeks, he began to improve. He started walking, every day a little more.
The research was presented at a conference and so hasn't yet been published in a journal. It's noted in the article that this was a small trial--only 25 people--and so before anyone gets too excited, the results need to be replicated in larger studies. Additionally, by the results they describe in here alone, we can't be sure that the improvement is actually due to decreasing the amount of virus present, or due to some other affect of the antiviral drug. Finally, even if the antivirals are killing a particular virus, at this point we still don't know which one that would be, or indeed, if it is only one.
All in all, an interesting tidbit of information, but I'm concerned that the small size of the study and the preliminary nature of the results will get downplayed. Many CFS sufferers feel like they've been left behind and ignored by moden medicine, and many are convinced that curing them is as easy as ridding them of whatever mysterious virus lurks in their body. This may be the case, and if larger controlled trials and additional bench research confirm these findings, great. Potentially, this could even help us find a cause (or causes) of the illness--but we're still a long way off from that right now. I just hope patient advocates temper their enthusiasm and wait for more science to confirm these findings.
*(which, according to the CDC website, include hypothyroidism, sleep apnea and narcolepsy, major depressive disorders, chronic mononucleosis, bipolar affective disorders, schizophrenia, eating disorders, cancer, autoimmune disease, hormonal disorders, subacute infections, obesity, alcohol or substance abuse, and reactions to prescribed medications)
- Log in to post comments
A good post. Very informative and well balanced. Thanks!
Half those symptoms, insomnia, etc., can be caused (in some poeple) from just high caffiene and sugar intake. I'd bet that many diagnosed with CFS have something easily treatable, if hard to diagnose.
But suggesting to someone that they drop an addiction seems unheard of in the industry. Doctors would rather prescribe medicine to high blood pressure patients than suggest that they cut out coffee. Only as a last resort, when the various medicines fail, is such a thing offered. That might be never for CFS.
The reason doctors don't generally tell you to give up coffee is because there's not much evidence that coffee is bad for you (unless you take massive doses). On the other hand reducing blood pressure via pharmaceutical agents does reduce the odds of heart disease and stroke.
Just because something tastes or feels good doesn't make it bad for you. And blaming the patient for their condition isn't always helpful either.
That was a *very* interesting post Tara.
You're right that patient advocacy groups will need to treat this data as what it is, but I don't think that any of them will.
I'm particularly worried that if the manufacturers of Valcyte behave irresponsibly and start chucking funding at the advocacy groups then I reckon we'll see a raft of newspaper articles about this great new 'treatment', accompanied by long emotive interviews with a particularly photogenic CFS sufferer or two and calls for it to be made available to all CFS sufferers immediately.
Hi Tom P,
I am someone with CFS. From what I've seen so far, the campaigning CFS people are being cautious, pointing out that it may only work for a subset, that it needs more/bigger trials, etc., etc. But yeah, we are excited, just can't help it, not when we've been ill for so long with little hope.
Hi Stephen - among the CFS people I know, often one of the first things they try is cut back/cut out caffeine, sugar, and many can't tolerate alcohol at all.
As for diagnosis, Jonathan Kerr's team are working on that (gene expression diagnostic test), they published a review last year in the Journal of Clinical Virology, authors were Devanur, Kerr. They are interested in trialling beta interferon and etanercept.
Kenny de Meirleir claims to have a diagnostic panel, diagram here (need to scroll down a bit) :- http://www.ahmf.org/05currentper.htm
There will be two CFS conferences in Britain in May, details of the London one here http://www.investinme.org/IIME%20International%20ME%20Conference%202007… and the other is in Edinburgh
I have had CFS for a couple of decades and I just came off a six month course of valcyte. I have been getting better over the last couple years due to treatments (Rx'd by an experienced MD) with antivirals and antibiotics. I still haven't been able to resume running everyday, but I'm now able to run every other day. It's really a debilitating illness.
A word of warning for those who want to engage the science on CFS, (let alone the politics):
It is one of the most confounded peer-reviewed databases you will read.
Pay close attention to the selection criteria used to define the patient group. There are several in use and they are not necessarily reliable or compatible, especially when trying to figure out the relationship between CFS and myalgic encephalomyelitis.
The various outcome assessment criteria are also problematic.
Then there is the tricky issue of where fibromyalgia fits into all this, given its high co-morbidity with CFS.
And that is just the start...
Have fun.
Does anyone know what dose of valganciclovir was used in the CFS patients that Dr. Montoya has treated? Or the dose that will be used in the upcoming trial?
Stephen writes:
> Doctors would rather prescribe medicine to high blood
> pressure patients than suggest that they cut out coffee.
Some doctors, perhaps. In recent years, in response to two different maladies, I've had two doctors and a nurse practitioner tell me to try knocking off the caffeine before even thinking of medication. And they were right. Some docs are indeed apathetic drones (or, more likely, severely depressed), but many are not.
Stephen writes:
> Doctors would rather prescribe medicine to high blood
> pressure patients than suggest that they cut out coffee.
Some doctors, perhaps. In recent years, in response to two different maladies, I've had two doctors and a nurse practitioner tell me to try knocking off the caffeine before even thinking of medication. And they were right. Some docs are indeed apathetic drones (or, more likely, severely depressed), but many are not.
i agree with the basic premise of this post, but the idea that people should be worrying about what patients and patient advocacy groups will do with information is a little patronizing.
the only reason that the CDC has finally recognized that CFS is not a psycosomatic disorder is due to the painstaking efforts of patients - which considering that the disease itself is so debilitating, is no less than heroic.
certainly, people with CFS should be careful about what they are willing to try in order to get better, but there are fortunately a handful of doctors out there that can take cutting edge info - like the potential benefits of Valcyte - and act on it in a responsible manner.
the debate about CFS being a physiological illness is over. for those interested, there is a fantastic article in the London Times that annihilates the idea that CFS may not be real. with recent published studies finding genetic abnormalities and spinal fluid analyses finding abnormal proteins not found in healthy patients, the only questions now are "what causes CFS," not "is it real?"
http://extras.timesonline.co.uk/times_hp.html
some think that until you have a test that can say you have CFS, that this is not the case, but would you believe that even to this day, MS is a clinical diagnosis - meaning there is no one test that can definitively say you have MS.
certainly with a condition as serious and life-changing as CFS, there is a danger in jumping into treatments before we know the ramifications of that treatment. Valcyte, for example, can have some very serious side effects.
however, if the scientific/medical community wants to be leading the charge in uncovering the mysteries of CFS, then they are going to have to catch up with us patients, not vice versa.
we have been waiting for you guys to step to the plate for too long. if you are now interested in finding out what the science is behind our disease, then as far as i am concerned you will be a welcomed addition, but the time for waiting is over.
Dan
there are great discussions going on about valganciclovir in CFS on the message boards at:
www.immunesupport.com
all the info, including finding doctors that specialize in treating CFS can be found there.
i'm sorry. i just have to make one more point here.
the reason that this article was written, it seems to
me, was in response to the media blitz that happen in
response to the Stanford Infectious Disease Doc who
conducted his own informal study of the Rx Valcyte on
patients with CFS.
This led to many headlines reading much like the title
of this piece: "Antivirals as a treatment for Chronic
Fatigue Syndrome." It was in major papers, on
msnbc.com, major news outlets across the world....
keep in mind, up to now, if you have CFS and you go to
your mainstream doctor, they just shrug their
shoulders and send you on your way.
so now you have a Doc at Stanford, who is getting
refered all these incredibly sick patients and has
nothing to offer them. so instead of turning them
away, he decides to try the med Valcyte - which he
himself says he expected to do little to nothing on
these patients. some who had been sick for upwards of
15-20 years!!!
and what happened? they recovered. can you imagine
being sick for 20 years and then on a shot in the dark
you recover???
this Doc did exactly what you are asking people with
CFS not to do. he refused to wait for the science, and
as a result may have stumbled upon a treatment that
could be a breakthrough for a great many people.
the fact of the matter is that science has failed CFS.
there has been virtually no funding for this disease
over the years - which really is still the case.
funding is based on potential profits and the
government and for university researchers, getting
published. and the major medical journals didn't even
look at papers that had to do with CFS because in
their minds it was not a real illness.
so, why should we wait for science to solve CFS when
for the most part, they aren't even looking.
that really is the case. you can count on your hand
how many major projects are under way in research
settings on CFS. the money is not there, and for the
most part, major researchers are not interested.
did you see the recent reports that it is now
unanimous in the scientific community that Global
Warming is real and that humans are part of it. we
didn't know that 20 years ago????
In many cases, science goes where we push it, as
evidenced by a Stanford Doc who took it upon himself
to try something that according to the most up to date
science really had no chance of helping.
maybe this will pan out, maybe it won't. who knows?
but one thing for is sure, none of this would have
happened if people with CFS didn't keep pushing for
their doctors to help us get better.
i hope you can see the irony of writing an article
-suggesting that we wait for the science - that only
came about because of a doctor who refused to do just
that.
i don't mean to be snarky here. and i recognize that
we can't move forward on this without very careful
research, but waiting isn't going to cut it either.
there is a middle ground, and part of that is taking
it upon ourselves to push the envelope.
the current estimates are that over a million Americans have CFS. now that it is finally being recognized, that will probably go up. that's alot of really sick people to have no treatment for.
To the previous commenters and perhaps passers-by:
"Waiting for science" is reasonable; I don't feel like wasting my time, and what little health that remains, on snake oil. That "shot in the dark" might help you, but it might also make you much, much worse or at least more tired and with many dollars less in your wallet. Google for "CFS cure" and see what people will try for relief. "Take these hormones!", "Try this diet!", "Close your eyes, click your heels together 3 times..."
Any doctor worth seeing puts you through multiple, ongoing trials of various kinds of treatment, from a very, very long list of lifestyle changes to medication (there's not that many that will even do anything to help, you know). You also see many, many doctors from various specialties.
It's ignorant to suggest anything about the illness, its diagnosis or the people involved in treatment when you really know dick-all about it. Further, it's degrading that the only time we hear about CFS is when it's on spin from the media or ignorant healthy people.
What many experience could very well be viral-based; that's actually not a new idea/discovery. As yet it does not explain or do anything to help *all* of the existing cases, just as this particular article states. For some people, it seems, anti-virals are at least a start at a treatment, which is better than nothing. It still leaves the rest with nothing, though. More research needs doing.
My guess would be that there are actually multiple factors involved, or possibly more than one illness.
mary
i don't really understand who you are taking issue with. nobody is suggesting that you try snake oils or even Valcyte to treat CFS.
the question of "waiting for science," presumes that someone is out there looking for the answers, and up til recently the amount of research being done on CFS was little to none. it wasn't even considered a "real" disease.
now one doctor decides to take it upon himself to try something to treat patients that have nothing, and the reaction to his possible success is to slow down??
if research on CFS was going any slower it would be going backwards.
what does it matter what percentage of people with CFS this helps? if it helps even one person that is one more than the medical community has helped up til now, and if nothing else it brought much needed media and consequently pharmaceutical attention to our cause.
i'm not saying that science is some kind of voo-doo not to be trusted. what i'm saying is that science for the most part hasn't even been looking or being utilized.
but now, thanks to the determination of patients to get answers, that is beginning to change.
CFS patients refused to be pushed to the back burner of the medical community, and as a result the culture is being turned on its head.
i hope you read that article in the London Times. it really codifies this whole discussion.
http://www.timesonline.co.uk/tol/life_and_style/health/features/article…
I think a lot of people are confused as to what exactly science is. In a way, the Stanford doctor is being scientific, although not rigorously scientific.
Theory: "this won't work".
Result: "it does".
Sounds like the first steps taken in science to me!
I do not know about the rest of the CFS sufferers out there, but I find anything written encouraging. Be that said, there are a lot of bogus/money making articles out there.
I am a sufferer of CFS since February 27, 2005. I woke up on this day and felt as though I never woke up. Most of the past 2 years I have spent searching for help. My mainstream doctors at KAISER have flat out told me there is nothing else they can do.
I have done all of the following:
- Seen a psychiatrist,
- Taken numerous prescribed medicines,
- Acupuncture/therapy,
- Sleep studies for all the disorders,
- Purchased sleep aids - APAC machines,
- Vitamins - more than I can count,
- Changed my diet - no coffee, coke, etc...
- Read a ton of articles and books.
I am now going to try an intravenous method here in Los Angeles.
I would give anything if I did not ahve to sleep 12-15 hours per day just to survive.
There is a cure out there!
Some of the strange things that happened to me as soon as this hit me are the following:
-My love of ice cream became a hatred for it. The TASTE seemed to change over night.
-My body started to hurt everywhere (fibromyalgia),
-Passion for all social activities ended.
If anyone is interested in talking about this, please email me.
The worst is that MOST people do not understand or have a clue how bad this is.
Randy
I was diagnosed with CFS about 6 wweks after I contracted CMV from some special needs students. I was a teacher and had no idea two of my students carried the virus when I became sick. It took my Dr. some time to figure out what I had after a CMV titre test showed an infection for the CMV virus. That was in 2001.I have been ill with CFS ever since. if you would like to talk with me, call me at (907)745-1718.
I have fibromyalgia. It's hellish because you look fine. I'm finally finding a treatment regimen that helps somewhat, but I will never be 100%, ever again. That's hard to accept.
Chronic illnesses like this are probably caused by a bacteria called mycoplasma incognitus. Dr. shyh ching lo and dr. garth nicolson injected this into animals and they all died, the data also shows a clear correlation with the disease. read the book www.projectdaylily.com and you can be in remission w doxycycline