Antibody wipeout relieves symptoms of chronic fatigue syndrome(newscientist.com)
newscientist.com
Antibody wipeout relieves symptoms of chronic fatigue syndrome
http://www.newscientist.com/article/mg22730284.000-antibody-wipeout-relieves-symptoms-of-chronic-fatigue-syndrome.html#.VZrJf3N3mbk
10 comments
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.
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.
I would really appreciate any references on this.
Have a look at this paper
Cytomegalovirus-seropositivity has a profound influence on the magnitude of major lymphoid subsets within healthy individuals
S Chidrawar, N Khan, W Wei, A McLarnon, N Smith, L Nayak, and P Moss
Clinical & Experimental Immunology 2009 vol. 155 (3) pp. 423-432
http://doi.wiley.com/10.1111/j.1365-2249.2008.03785.x
Cytomegalovirus-seropositivity has a profound influence on the magnitude of major lymphoid subsets within healthy individuals
S Chidrawar, N Khan, W Wei, A McLarnon, N Smith, L Nayak, and P Moss
Clinical & Experimental Immunology 2009 vol. 155 (3) pp. 423-432
http://doi.wiley.com/10.1111/j.1365-2249.2008.03785.x
Thanks!
I am hoping someone can help here because it has been affecting my life every day. I have been extremely fatigued for the past 2.5 years and I've lost so many things due to it. I sleep the majority of every day away. How do I know if this is CFS?
I guess what I'm asking is, where do I start to cross out other possible causes? Considering so many things can cause fatigue.
Thank you
I guess what I'm asking is, where do I start to cross out other possible causes? Considering so many things can cause fatigue.
Thank you
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.
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.
Wow I don't even know how to thank you for this, this is so extremely helpful. Thank you so much!
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!
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!
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'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.
Thank you!
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
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
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.
Very interesting! It didn't work for everyone, but it did work for a majority it looks like.
CFS is a pretty nasty condition, so I'm glad they've found something that works. My only concern would be the side effects from Rituxan. It's a well studied drug, but it really knocks down your immune system.
CFS is a pretty nasty condition, so I'm glad they've found something that works. My only concern would be the side effects from Rituxan. It's a well studied drug, but it really knocks down your immune system.
> 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.
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.
CFS, like most "syndromes", isn't really a well understood disease but rather a cluster of related symptoms that might indicate a currently unknown disease should a cause or mechanism be discovered. Are you chronically fatigued and the doctors can't diagnose an understood cause? Must be Chronic Fatigue Syndrome. Did your infant suddenly die and the doctors can't figure out how? Must be Sudden Infant Death Syndrome.
What this indicates is that, for a subset of people who are chronically fatigued for no reason that the doctors can figure out, there might be some kind of underlying autoimmune reaction that responds to this kind of treatment. If the mechanism is better understood and can be diagnosed, tested, and treated, then it's not Chronic Fatigue Syndrome anymore, but rather an actual disease.
What this indicates is that, for a subset of people who are chronically fatigued for no reason that the doctors can figure out, there might be some kind of underlying autoimmune reaction that responds to this kind of treatment. If the mechanism is better understood and can be diagnosed, tested, and treated, then it's not Chronic Fatigue Syndrome anymore, but rather an actual disease.
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.
"A 150-person study is now under way, and includes a control group."
I'm curious, the latest study which is presumably what triggered this story, involved no control group, yet they mention a smaller study from 2011 which did use a control.
If this really does hint at a breakthrough, why did it take so long to follow up on the first study, and why did this one not use a control group?
I'm curious, the latest study which is presumably what triggered this story, involved no control group, yet they mention a smaller study from 2011 which did use a control.
If this really does hint at a breakthrough, why did it take so long to follow up on the first study, and why did this one not use a control group?
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."
"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."
so, it is possible that some infection is an original cause for the elevated antibody level. It reminds the history of stomach ulcers where bacteria, not the stress, happened to be the primary reason. Matter over mind once again :)
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.
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.
Pretty much mirrors the experience of one of my family members. She contracted mumps and pneumonia in a fairly short time period, then was left with ongoing fatigue. A year on, she's definitely improving, but doing too much leaves her fatigued for days and she sleeps for 18+ hours some days.
A cure (or even treatments to shorten the recovery time) would be wonderful.
A cure (or even treatments to shorten the recovery time) would be wonderful.
> This would prevent people from getting enough oxygen, explaining their extreme fatigue, but the team caution that their theory is just speculation for now.
Caution, in scientific journalism; sadly, I'm kind of impressed.
Caution, in scientific journalism; sadly, I'm kind of impressed.
This is pretty solid evidence that CFS is not psychosomatic, given the difference in response between the control group and the group that received treatment. In case anyone was still unsure.
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.
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.
Or it could be that what causes CFS also affects brain chemistry in a way that can result in depression. That's where my money is.
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).
I've not read Cho but in 2011 trial none of the control group given placebos experienced relief against most of those given the drug. That seems like not much of a placebo response to me.
The 2011 study was negative in its primary end-point. If you look at the results you'll see that the divergence between active and placebo groups only happened after the researchers unblinded the data at the 3 month point. Although they say that the patients were still blinded until the end, there are still some question marks about the study.
As for any autoimmune disease, have a read up on Naltrexone (Papers that is, not pseudo science blogs and advocacy sites that are generally poorly substantiated)
One on an MS model in mice : http://www.ncbi.nlm.nih.gov/pubmed/25906771
One on an MS model in mice : http://www.ncbi.nlm.nih.gov/pubmed/25906771
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
from :
http://www.ldndatabase.com/cfs.html
I have a close friend who has chronic fatigue. It is commonly stigmatized as many regard those who are chronically fatigued as lazy, just making excuses.
But my friend is one of the hardest-working, most productive people I have met and is quite wealthy as a result at first of her code, then as a result of her management expertise.
Even so she feels like crap 24/7 and it just won't go away. Nothing helps.
She can be a little hard to get along with, though.
But my friend is one of the hardest-working, most productive people I have met and is quite wealthy as a result at first of her code, then as a result of her management expertise.
Even so she feels like crap 24/7 and it just won't go away. Nothing helps.
She can be a little hard to get along with, though.
Research tends to show the opposite, that CFS patients tend to be over-active (pre-illness) and have "action-prone" personalities.
Rather than defaulting to drugs for CFS, I would much rather find the core cause of it? Oftentimes it is an infection, stress or even the food we put into our bodies. You would be amazed at how better you can feel and how much more energy you have by simply changing your diet and lifestyle.
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.
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.
I can sympathize, my wife is asleep next to me and I'm sure she will be excited to hear some progress is being made on CFS. CFS isn't a sexy thing to research, it doesn't get a lot of funding, same thing with a lot of other conditions and syndromes. No idea what causes it, but taking x/y/x unrelated medication seems to alleviate the symptoms.
I hope you find some answers. I understand the struggle.
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.
I have personally reversed CFS & an auto-immune disease with crazy high anti-bodies by sticking with a very strict diet and changing life-style.
What is your diet?
See my comment at https://news.ycombinator.com/item?id=9843715
Sounds like you did something and then you got better. Sadly, post hoc ergo propter hoc is not a treatment modality.
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1) Reversing B cell aging
http://www.impactaging.com/papers/v3/n4/full/100313.html
2) Long-lived autoreactive plasma cells drive persistent autoimmune inflammation.
http://dx.doi.org/10.1038/nrrheum.2011.1
3) B-cell depletion reactivates B lymphopoiesis in the BM and rejuvenates the B lineage in aging
http://dx.doi.org/10.1182/blood-2010-09-307983
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Then for treatment of autoimmune disorders such as MS, more comprehensive destruction:
http://www.eurekalert.org/pub_releases/2009-01/nu-sct012909....
This was also tried for rheumatoid arthritis with mixed results before the development of biologics, and everyone gave up on the immune reboot with chemotherapy in favor of controlling the condition for some patients.
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Then there are the prospects for destroying T cells specialized to herpesviruses like CMV (you probably have CMV, near everyone has CMV by time old age rolls around, it's very prevalent) that are thought to cause a large degree of immunosenescence by overloading the repertoire of immune cells with memory T cells for CMV and the like - too many of those and not enough naive T cells to deal with new threats and cancer surveillance. That isn't a going concern yet, but it certainly could be soon.