5 ms·

Skepticism is required. The doctors that used to diagnose people with chronic fatigue syndrome have moved on and now are diagnosing people with 'chronic' Lyme d

Skepticism is required. The doctors that used to diagnose people with chronic fatigue syndrome have moved on and now are diagnosing people with 'chronic' Lyme disease. These are known scammers. This article reports on doctors still diagnosing people with chronic fatigue syndrome and backs up their study with actual research. But this huffington article gives no real information - it just states that the study had a control group of 358 and a test group of 298. It doesn't give any numbers other than that. Chronic fatigue syndrome and, now, chronic Lyme disease are probably more related to depression than to any external biological agent like a virus or bacterium.

brianstorms 12y ago
Skepticism is required for your comment. There are scammers, sure. There are also incompetent (or just lazy or ignorant) doctors. Bad diagnoses are made. Things happen. But the fact remains that the disease, a very complicated disease with no direct simple cause and no direct simple cure (let alone treatment), exists. A large part of the problem is there is little money in it, from the medical industry's perspective. Not a large enough "market" of sufferers. Not a large enough business opportunity for the pharmaceutical industry. Not a large blip on the radar of the health insurance industry who don't give a damn. Not a large enough concern for the NIH and other government agencies. And so the money doesn't flow. And that means a lot of research doesn't get done. And CFS/ME stays on the "fringe", and a lot of mainstream doctors in Kaiser and other big systems don't know how to or don't want to deal with CFS/ME, because it doesn't show up on their checklists, it's too nuanced for them to bother with, and the patients are sent "out of network" (read: they're on their own). And so it goes. Finally, I would beg to differ regarding no viral or bacteriological signatures for CFS/ME. More than a decade and a half of direct experience with a loved one with CFS/ME suggests that there is, based on evidence shown of viral markers revealed in exotic, hard-to-get blood tests (read; insanely expensive, not-covered-by-insurance) that most labs won't even do.
- cpncrunch 12y ago
  Have these "insanely expensive" tests been validated? According to the published research, there are no viral markers for CFS, so I suspect you might have been bilked by a quack.
  - blennon 12y ago
    There is some evidence for viral markers of CFS [1-3]. [1] http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0085387 http://journals.plos.org/plosone/article?id=10.1371/journal.... [2] http://www.ncbi.nlm.nih.gov/pubmed/?term=15113035 http://www.ncbi.nlm.nih.gov/pubmed/?term=15113035 [3] http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0047891 http://journals.plos.org/plosone/article?id=10.1371/journal....
    - cpncrunch 12y ago
      Regarding the third study, it could just be EBV reactivation. That seems the most plausible explanation, given that some studies find no EBV in patients.
      - jpravetz 12y ago
        I'd agree with that. I'm of the pretty firm belief that CFS and a bunch of other autoimmune disorders are of a parasitic origin. This pretty much sums up my knowledge on the subject: http://www.iadvocatehealth.org/protozoal_infection0.aspx#.aspx http://www.iadvocatehealth.org/protozoal_infection0.aspx#.as...
  - tomhoward 12y ago
    I downvoted this before I read your comment below, which indicates you know much more about this topic than is evident from this comment. As someone who has been battling something that seems to fit the description of CFS for several years, I agree with you that it is largely a psychosomatic condition, and the success I'm now seeing in overcoming it has coincided with a lot of work I've been doing to overcome emotional traumas and self-sabotaging beliefs. That said, I have seen studies that show a correlation between CFS symptoms and active infections of several viruses including Epstein-Barre, Cytomegalovirus, and Human Herpesvirus 6. These viruses are present in most people but dormant - whereas they are commonly found to be active in those diagnosed with CFS (along with MS, Aspergers's, Alzheimer's and other auto-immune conditions). I was tested for EBV and CMV (HHV6 wasn't available at the lab I went to) at the time I started to feel significantly better, and was found to have evidence of previous active infections of both, but neither were active at the time of the test. From all the research I've done, the mechanism seems to be: prolonged emotional stress/trauma -> weakened immunity and/or auto-immunity -> fatigue and illness as infections take hold and body tissue is damaged by auto-immunity. So I guess you're right in the sense that there is no single bio-marker for CFS, but there are correlates that can help to support a diagnosis. As for treatments, well I haven't seen any practitioners offer anything convincing. So maybe your comment was totally valid after all.
Malcx 12y ago
>>Chronic fatigue syndrome and, now, chronic Lyme disease are probably more related to depression than to any external biological agent like a virus or bacterium. As someone whose partner has CFS (since she was aged 12) I have to disagree strongly on this, although my experiences are anecdotal I'm more than 99% sure CFS is a physical condition rather than mental. Having also studied much of the scientific literature of the past few years I'd be strongly critical of your assertion based on the results of any respected doctor or controlled study. Unfortunately suggesting it's a mental condition has resulted in such helpful suggestions from doctors as "get a new hair cut to cheer you up" which is akin to telling a cancer sufferer that lipstick might help. I'd be happy to discuss further and provide numerous studies suggesting it is a result of a (most likely) viral infection that has had long term repercussions on the immune system. There are scammers out there, but it's not the patients or the majority of doctors - at least in the UK. Disclaimer: I'm currently working on a data gathering problem related to this as a side project with a view to crowdsourced funding.
- zeroviscosity 12y ago
  If you need any help with your data project I'd be happy to volunteer my time.
  - Malcx 12y ago
    Thanks - email in my profile, please drop me a quick message...
- cpncrunch 12y ago
  Having recovered from CFS myself and researched it for about 15 years, it seems highly likely it is psychosomatic rather than organic. The literature seems to point in this direction -- that it is a condition caused by chronic stress. (Interestingly the biomarker found in this study is also found in PTSD and in abused women). I think you've hit the nub of the problem with your statement that you're "more than 99% sure CFS is a physical condition". The majority of people (including many doctors) simply don't understand certain basic facts about how the body works (such as the fact that cortisol is a stress hormone, but also one of the main modulators of the immune system). Most people still have a Cartesian/Victorian view of the human body, and believe that the mind and body are completely separate. Telling someone to "get a new hair cut to cheer you up" won't be much use for major depression or PTSD either. Comments like this just perpetuate the misconception/prejudice that psychiatric conditions aren't real illnesses. I think it's a combination of this prejudice, combined with a misunderstanding of how the body works, that has caused most of the problems relating to understanding CFS.
munster 12y ago
I think that is way too simplistic. Their could be many causes of CFS with one being undiagnosed depression. I my self was on the verge of being diagnosed with CFS after 1 year of being crook and would have been only I lucked out and got tested for a Ricketsia which came back positive. That test is reasonably rare to have done here so I think that's just an example of where people really do have problems but because the symptoms are so common they have not been tested for these rarer things or in the case of the really rare infections are just not known at all medically. On another note I can confirm having had it said to me several times by professionals that it is in your head, how devastating that is to the person being told and careful consideration should before going down that path.
pfh 12y ago
If I can pick out a somewhat abstract question: Can we believe that something exists without knowing its cause? Yes. We believe in electromagnetism, for example. We've characterized it, it has reliable properties, we therefore believe it exists. The recent Institute of Medicine report giving diagnostic algorithm for CFS/ME (and proposing changing the name to SEID) is similar. There is a cluster of symptoms that occur together, we can give it a name, characterize it more accurately, and search for treatments. Hopefully we will find a cause, it is very good fortune that many diseases have simple causes but it isn't a given. It looks like a lot of genetic diseases don't have simple causes, for example (hence GWAS has been disappointing).

brianstorms 12y ago

Skepticism is required for your comment. There are scammers, sure. There are also incompetent (or just lazy or ignorant) doctors. Bad diagnoses are made. Things happen. But the fact remains that the disease, a very complicated disease with no direct simple cause and no direct simple cure (let alone treatment), exists. A large part of the problem is there is little money in it, from the medical industry's perspective. Not a large enough "market" of sufferers. Not a large enough business opportunity for the pharmaceutical industry. Not a large blip on the radar of the health insurance industry who don't give a damn. Not a large enough concern for the NIH and other government agencies. And so the money doesn't flow. And that means a lot of research doesn't get done. And CFS/ME stays on the "fringe", and a lot of mainstream doctors in Kaiser and other big systems don't know how to or don't want to deal with CFS/ME, because it doesn't show up on their checklists, it's too nuanced for them to bother with, and the patients are sent "out of network" (read: they're on their own). And so it goes. Finally, I would beg to differ regarding no viral or bacteriological signatures for CFS/ME. More than a decade and a half of direct experience with a loved one with CFS/ME suggests that there is, based on evidence shown of viral markers revealed in exotic, hard-to-get blood tests (read; insanely expensive, not-covered-by-insurance) that most labs won't even do.

cpncrunch 12y ago
Have these "insanely expensive" tests been validated? According to the published research, there are no viral markers for CFS, so I suspect you might have been bilked by a quack.
- blennon 12y ago
  There is some evidence for viral markers of CFS [1-3]. [1] http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0085387 http://journals.plos.org/plosone/article?id=10.1371/journal.... [2] http://www.ncbi.nlm.nih.gov/pubmed/?term=15113035 http://www.ncbi.nlm.nih.gov/pubmed/?term=15113035 [3] http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0047891 http://journals.plos.org/plosone/article?id=10.1371/journal....
  - cpncrunch 12y ago
    Regarding the third study, it could just be EBV reactivation. That seems the most plausible explanation, given that some studies find no EBV in patients.
    - jpravetz 12y ago
      I'd agree with that. I'm of the pretty firm belief that CFS and a bunch of other autoimmune disorders are of a parasitic origin. This pretty much sums up my knowledge on the subject: http://www.iadvocatehealth.org/protozoal_infection0.aspx#.aspx http://www.iadvocatehealth.org/protozoal_infection0.aspx#.as...
- tomhoward 12y ago
  I downvoted this before I read your comment below, which indicates you know much more about this topic than is evident from this comment. As someone who has been battling something that seems to fit the description of CFS for several years, I agree with you that it is largely a psychosomatic condition, and the success I'm now seeing in overcoming it has coincided with a lot of work I've been doing to overcome emotional traumas and self-sabotaging beliefs. That said, I have seen studies that show a correlation between CFS symptoms and active infections of several viruses including Epstein-Barre, Cytomegalovirus, and Human Herpesvirus 6. These viruses are present in most people but dormant - whereas they are commonly found to be active in those diagnosed with CFS (along with MS, Aspergers's, Alzheimer's and other auto-immune conditions). I was tested for EBV and CMV (HHV6 wasn't available at the lab I went to) at the time I started to feel significantly better, and was found to have evidence of previous active infections of both, but neither were active at the time of the test. From all the research I've done, the mechanism seems to be: prolonged emotional stress/trauma -> weakened immunity and/or auto-immunity -> fatigue and illness as infections take hold and body tissue is damaged by auto-immunity. So I guess you're right in the sense that there is no single bio-marker for CFS, but there are correlates that can help to support a diagnosis. As for treatments, well I haven't seen any practitioners offer anything convincing. So maybe your comment was totally valid after all.

Malcx 12y ago

>>Chronic fatigue syndrome and, now, chronic Lyme disease are probably more related to depression than to any external biological agent like a virus or bacterium. As someone whose partner has CFS (since she was aged 12) I have to disagree strongly on this, although my experiences are anecdotal I'm more than 99% sure CFS is a physical condition rather than mental. Having also studied much of the scientific literature of the past few years I'd be strongly critical of your assertion based on the results of any respected doctor or controlled study. Unfortunately suggesting it's a mental condition has resulted in such helpful suggestions from doctors as "get a new hair cut to cheer you up" which is akin to telling a cancer sufferer that lipstick might help. I'd be happy to discuss further and provide numerous studies suggesting it is a result of a (most likely) viral infection that has had long term repercussions on the immune system. There are scammers out there, but it's not the patients or the majority of doctors - at least in the UK. Disclaimer: I'm currently working on a data gathering problem related to this as a side project with a view to crowdsourced funding.

zeroviscosity 12y ago
If you need any help with your data project I'd be happy to volunteer my time.
- Malcx 12y ago
  Thanks - email in my profile, please drop me a quick message...
cpncrunch 12y ago
Having recovered from CFS myself and researched it for about 15 years, it seems highly likely it is psychosomatic rather than organic. The literature seems to point in this direction -- that it is a condition caused by chronic stress. (Interestingly the biomarker found in this study is also found in PTSD and in abused women). I think you've hit the nub of the problem with your statement that you're "more than 99% sure CFS is a physical condition". The majority of people (including many doctors) simply don't understand certain basic facts about how the body works (such as the fact that cortisol is a stress hormone, but also one of the main modulators of the immune system). Most people still have a Cartesian/Victorian view of the human body, and believe that the mind and body are completely separate. Telling someone to "get a new hair cut to cheer you up" won't be much use for major depression or PTSD either. Comments like this just perpetuate the misconception/prejudice that psychiatric conditions aren't real illnesses. I think it's a combination of this prejudice, combined with a misunderstanding of how the body works, that has caused most of the problems relating to understanding CFS.

munster 12y ago

I think that is way too simplistic. Their could be many causes of CFS with one being undiagnosed depression. I my self was on the verge of being diagnosed with CFS after 1 year of being crook and would have been only I lucked out and got tested for a Ricketsia which came back positive. That test is reasonably rare to have done here so I think that's just an example of where people really do have problems but because the symptoms are so common they have not been tested for these rarer things or in the case of the really rare infections are just not known at all medically. On another note I can confirm having had it said to me several times by professionals that it is in your head, how devastating that is to the person being told and careful consideration should before going down that path.

pfh 12y ago

If I can pick out a somewhat abstract question: Can we believe that something exists without knowing its cause? Yes. We believe in electromagnetism, for example. We've characterized it, it has reliable properties, we therefore believe it exists. The recent Institute of Medicine report giving diagnostic algorithm for CFS/ME (and proposing changing the name to SEID) is similar. There is a cluster of symptoms that occur together, we can give it a name, characterize it more accurately, and search for treatments. Hopefully we will find a cause, it is very good fortune that many diseases have simple causes but it isn't a given. It looks like a lot of genetic diseases don't have simple causes, for example (hence GWAS has been disappointing).