Antibody wipeout relieves symptoms of chronic fatigue syndrome

Yes the problem with the CMV (and EBV) T cells is too often ignored. Once these T-cells become more than 80% T-cell population your life expectancy is less than a year. You pretty much have leukaemia.

In my opinion we should be testing all people over the age of 65 for CMV and EBV and putting them on anti-herpies virus drugs to suppress the chronic low level viral turnover that is driving this T-cell clonal expansion.

Go to your doctor and he/she should be able to run tests to rule other illnesses out. If it is CFS, there are many things you can do to improve your situation, and perhaps recover.

I'm not going to downplay how bad it is for you, I was in a similar situation to you a few years ago.

I'm relatively sure it was simply a bit of depression for me, regular exercise and improving my diet basically cleared it all up.

Definately go see your doctor. Nobody on the internet can really help.

I have lived with CFS for about six years now. Step one is to see your primary care doctor and rule out all the things they can test you for. That will take a while. I remember hoping I would have MS because then that would at least explain things. :)

Step two, if you have CFS, is to come up with a plan to manage your energy levels and think about how you are going to live your life. For me, not overdoing it is key. You cannot recover like a healthy person, and often each crash makes your baseline even lower.

Step three, think about how you want to try to treat the underlying issue. Since it's not clear what the underlying issue is, there's a lot of paths here. I was conservative and didn't try a lot of experimental things. I worked with Doctor Jose Montoya at Stanford (http://med.stanford.edu/chronicfatiguesyndrome.html) who is an amazing doctor. He's highly recommended if you can make it to Palo Alto. My health has slowly improved over the years and is much better now than it was say 3 years ago.

Best of luck!

There are some common-ish ones (thyroid problems, iron deficiency, etc.) that can really only be evaluated by a doctor. Seeing a professional is highly recommended.

Go see a good doctor that will be thorough in checking all other probably causes of fatigue. You should probably end up seeing a few specialists as well. The major symptom of CFS is post-exertional malaise, meaning you feel worse after sufficient exertion.

While you wait through what may be many months of medical testing before everything is ruled out, you might try an experiment. Exercise usually helps depression, but usually worsens CFS. Try a bit of gentle exercise, and work your way up gradually over time until you can sustain some intensity. If that improves your fatigue, that's good news, it could be depression, and keep up the exercise. If you feel worse, more depressed, confused, fatigued, with trouble concentrating, that could be post-exertional malaise. Try taking it extremely easy for a few months (maybe many months). Don't do anything that feels like you're pushing yourself. If you start to feel better, if your fatigue and mood start to lift, and you are able to concentrate better, then it could be CFS, and keep up the gentle pacing.

Also, if your fatigue came on after a relatively severe viral infection, that would point to CFS as well.

Join our small CFS group on Reddit:

http://www.reddit.com/r/cfs/

You will get good help and tips there.

You can also explore the FAQ for some help:

http://www.reddit.com/r/cfs/wiki/index

> Very interesting! It didn't work for everyone, but it did work for a majority it looks like.

Given that they didn't know what caused CFS (and without further study they still don't know for sure), they don't necessarily have a reliable test that distinguishes CFS from other things that present with similar symptoms. So it's entirely possible that CFS is an immune disorder, this treatment worked on people with CFS, and the remaining cases didn't actually have CFS. It's also possible that some fraction of those it didn't work on have CFS and the drug is not entirely effective, or that some fraction of those it did "work" on are experiencing a placebo effect or a treatment for a different disease that responds to the same treatment.

The study was uncontrolled, so we don't know how much of that is the placebo effect (which typically is anywhere between 11 and 46% for CFS treatments). It will be interesting to see the results of the upcoming controlled study. A previous controlled study did show positive results, but it was quite small.

From the study at http://journals.plos.org/plosone/article?id=10.1371/journal.... :

"According to protocol for the previous randomized KTS-1-2008 study, patients assigned to the placebo group should be given the opportunity to participate in a new open-label study with rituximab. The protocol for the present study was designed to learn about the therapeutic efficacy of rituximab maintenance treatment, for response rates and response durations. Also, the experiences could form the basis for design of a future randomized, double-blind and placebo-controlled trial."

Most cases of CFS seem to start out as a "post-viral syndrome". Basically people get a virus, recover from the virus but are left with ongoing fatigue symptoms. After six months it's declared to be CFS (CFS isn't a specific disease, it just declares that you've been fatigued for over six months).

So yes, I think many people who've had CFS would say it's a no-brainer that it was related to an infection. In my case I got "mono" (or glandular fever as we call it here) and it turned into CFS for about seven years. But in the end I recovered and I've been fine for nearly a decade now.

I think there's a flaw in your logic here: the fact that a drug that is targeting the immune system helps so much does not invalidate a psychological component in the etiology. It could be upstream (psychological stress could trigger the immune response that leads to CFS), it could be downstream (CFS leads to mental anguish given a patient's deviation from normative life-course, perceived isolation, and the historically-contested nature of the malady), or it could be both.

That said, a psychological / psychosomatic component wouldn't undermine its legitimacy in any way. Thankfully, I think we are entering an era in which psychological aspects of ailments are recognized as critical, beyond the control of the patient (e.g. not reflecting a lack of virtue or wherewithal on their part), and treatable.

I'm in the bio-pyscho-social camp, I believe the three elements work in concert to keep the show going, over stressing all three consistently does seem to correlate with an immune malfunction, and treatments that approach only 1 of the three 'prongs' appear less successful than those that approach all three.

Not really, it actually seems in line with the expected placebo response in CFS (Cho et al., 2005).

On the patient experience, i.e. entirely anecdotal side : https://creator.zoho.com/ldndatabase/all-others/view-perma/C...

from :

http://www.ldndatabase.com/cfs.html

Research tends to show the opposite, that CFS patients tend to be over-active (pre-illness) and have "action-prone" personalities.

Sounds like you found something that works for you. Excellent!

Diet and exercise were certainly where I started. That was seven years ago. Still no joy.

Infections eventually go away. Maybe. Or we treat them with drugs, diet etc. Stress can be reduced, managed, eliminated. We can change the food we put in our bodies.

When nothing works, then what? Keep looking.

If you reckon you know what the core cause of CFS is and have done some experiments that provide evidence, you should publish that stuff.

Sounds like you did something and then you got better. Sadly, post hoc ergo propter hoc is not a treatment modality.