7 ms·

I'm just astonished by this. Millions of people (in the US alone!) suffer from this illness and I think everyone has wondered, or heard it wondered, if it's im

I'm just astonished by this. Millions of people (in the US alone!) suffer from this illness and I think everyone has wondered, or heard it wondered, if it's imaginary. For all these people to know there's something actually physically wrong with them is massive. It'll shift the thinking of everyone in the profession, of their families and friends and colleagues, and of themselves. It's a huge, huge breakthrough.

Twirrim 7y ago
I've known several people over the years who have had Chronic Fatigue Syndrome, and most of them have at some stage or another had to deal with discrimination from people that told them it was a made up illness. Having a solid test like this will make a phenomenal difference.
- e-m-p 7y ago
  Yes
daedalus_f 7y ago
This is promising data but it’s very early. The authors are not really sure what the test is measuring on a cellular level, though they speculate a lot in the discussion, and we can’t yet truly infer a causal link between what’s causing the test result and disease status. It’s is going to take a lot more validation before we get to the stage where this is clinically useful. For instance, the control group were healthy, what if instead you compared test results in CFS to another disease condition that can mimic CFS, would it still work as well? In the extreme case, the test could just be a generic flag that someone is non-specifically unwell, we just can’t tell from this data alone.
- vaelin 7y ago
  It could also be measuring the result of extreme inactivity. I am bedridden, and I have no doubt that lying in bed for years has had a profound effect on my physiology independently of my ME/CFS. The acid test will be when we compare ME/CFS patients to matched MS patients. However, as Ron Davis has stated, it might also be the case that MS patients have ME/CFS, as ME/CFS is highly heterogenous and may be arrived at from multiple directions. There are lots of details that need to be ironed out. Nevertheless, this is exciting news.
vaelin 7y ago
I have ME/CFS. The evidence has been clear that it is a physical condition for quite a while now. In fact, the Institute of Medicine clarified that point in a thorough report in 2015: > The primary message of the committee’s report is that ME/CFS is a serious, chronic, complex, systemic disease that often can profoundly affect the lives of patients. >Many health care providers are skeptical about the seriousness of ME/CFS, mistake it for a mental health condition, or consider it a figment of the patient’s imagination. Misconceptions or dismissive attitudes on the part of health care providers make the path to diagnosis long and frustrating for many patients. The committee stresses that health care providers should acknowledge ME/CFS as a serious illness that requires timely diagnosis and appropriate care. [1] Having said that, I am obviously delighted by this study for a whole host of reasons. A diagnostic test will be hugely beneficial in driving home the message that it is not, in fact, an imaginary condition. It will also be beneficial in testing treatment outcomes, as the lack of a test has made gauging treatment efficacy very challenging. There are a lot of hurdles to overcome yet, but we are FINALLY on the right path. [1] Quotes contained in the Key Brief PDF - http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.asp...
jdietrich 7y ago
>Millions of people (in the US alone!) suffer from this illness and I think everyone has wondered, or heard it wondered, if it's imaginary. For all these people to know there's something actually physically wrong with them is massive. IMO the broader issue is the stigma against mental illness. The leading hypothesis remains that chronic fatigue syndrome is a mental illness. Both your comment and the linked article imply a false dichotomy between "real" physical illness and "imaginary" mental illness. Mental illnesses are every bit as "real" as physical illnesses. They cause real suffering, real disability and real death. If chronic fatigue syndrome happens to have a psychological etiology, then sufferers still deserve compassion, effective treatment and proper research. The research in question has a relatively small sample size and only compares CFS patients with healthy volunteers. Identifying abnormalities in immunological or stress-response functioning may not be particularly useful in proving that CFS is "real" (i.e. non-psychological), because we have identified similar abnormalities in patients with depressive disorders. Some researchers argue that major depressive disorder may be an autoimmune disorder, although this is far from a mainstream opinion. https://doi.org/10.1073/pnas.1901274116 https://doi.org/10.1073/pnas.1901274116 https://doi.org/10.1371/journal.pone.0138904 https://doi.org/10.1371/journal.pone.0138904 https://doi.org/10.1016/j.it.2005.11.006 https://doi.org/10.1016/j.it.2005.11.006 https://doi.org/10.1016/j.pnpbp.2004.11.003 https://doi.org/10.1016/j.pnpbp.2004.11.003
- GordonS 7y ago
  I don't think CFS is a mental illness, and I haven't seen evidence that that's the "leading hypothesis" (I've been diagnosed with CFS, although that was before I was later diagnosed with nerve damage), so this is something I've read deeply on. CFS can absolutely cause mental illness though - constant fatigue, and sometimes pain, can take a terrible toll.
  - cpncrunch 7y ago
    The evidence shows that CFS is triggered by stress or viral infections (which are physiologically stressful), and that it is associated with dysruptions to the HPA axis. Everyone I know who has recovered (including myself) has said that dealing with psychological issues is the most important factor in recovering.
sagebird 7y ago
I would like to see controls that make an attempt to differentiate psychogenic causes. IE if you paid 20 people who do not claim to have chronic fatigue syndrome but have depression to fake having chronic fatigue syndrome for two months- eg watch tv on a couch, then they were tested, I wonder if they would not have the biomarkers. Likewise, I would like to see how people who claim to have fibromyalgia would do on this test. I don’t think a biomarker adds much to the debate on the legitimacy, unless experiment and controls are carefully designed. How would people react if there were a biomarker for people who have reported a UFO sighting? Would we finally declare their ufo sighting reports to be accurate?
- GordonS 7y ago
  > fake having chronic fatigue syndrome for two months- eg watch tv on a couch If that's what you think CFS is like, you should do some reading before posting something so obviously insulting.
  - deleted 7y ago
    [deleted]
- stordoff 7y ago
  > have depression to fake having chronic fatigue syndrome for two months- eg watch tv on a couch If you think this is what CFS is, you clearly have no idea. Have you even fallen asleep while eating a meal, despite having a good night's sleep the night before? Have you even slept for 18 hours because you have had the audacity to go to collage for three hours? Someone I know does on a routine basis. > Would we finally declare their ufo sighting reports to be accurate? No, but we might ask if there is some underlying connection that causes them to perceive UFOs (also, comparing probably illusionary UFO sightings to obvious, observable [regardless of cause] symptoms is rather insulting).
- rmtech 7y ago
  yeah, I think this should be repeated several times & with some better controls such as people who are bedridden for a different reason.
AdamCraven 7y ago
As someone who has suffered from CFS for a long time, it is definitely not imaginary. To say it’s purely physical is discounting the mental aspect of the disease. I personally suffered trauma as a child and I’ve seen first hand what strong negative emotions can do to the body. I would think it unlikely that there will be a miracle drug that will cure it, I believe it is a disease of both the mental and physical. For anyone affected by CFS and think that trauma may play a part, the book “The Body Keeps the Score” has helped me get more energy and control back.
- rfugger 7y ago
  I don't disagree, but I still have hope. Most CFS cases come on suddenly with an infection, and something breaks in the body. That situation may have been brought on by a gradual weakening of the system over time due to stress, etc., but that doesn't mean that whatever has broken can't be fixed or reset in some way.

Twirrim 7y ago

I've known several people over the years who have had Chronic Fatigue Syndrome, and most of them have at some stage or another had to deal with discrimination from people that told them it was a made up illness. Having a solid test like this will make a phenomenal difference.

e-m-p 7y ago
Yes

daedalus_f 7y ago

This is promising data but it’s very early. The authors are not really sure what the test is measuring on a cellular level, though they speculate a lot in the discussion, and we can’t yet truly infer a causal link between what’s causing the test result and disease status. It’s is going to take a lot more validation before we get to the stage where this is clinically useful. For instance, the control group were healthy, what if instead you compared test results in CFS to another disease condition that can mimic CFS, would it still work as well? In the extreme case, the test could just be a generic flag that someone is non-specifically unwell, we just can’t tell from this data alone.

vaelin 7y ago
It could also be measuring the result of extreme inactivity. I am bedridden, and I have no doubt that lying in bed for years has had a profound effect on my physiology independently of my ME/CFS. The acid test will be when we compare ME/CFS patients to matched MS patients. However, as Ron Davis has stated, it might also be the case that MS patients have ME/CFS, as ME/CFS is highly heterogenous and may be arrived at from multiple directions. There are lots of details that need to be ironed out. Nevertheless, this is exciting news.

vaelin 7y ago

I have ME/CFS. The evidence has been clear that it is a physical condition for quite a while now. In fact, the Institute of Medicine clarified that point in a thorough report in 2015: > The primary message of the committee’s report is that ME/CFS is a serious, chronic, complex, systemic disease that often can profoundly affect the lives of patients. >Many health care providers are skeptical about the seriousness of ME/CFS, mistake it for a mental health condition, or consider it a figment of the patient’s imagination. Misconceptions or dismissive attitudes on the part of health care providers make the path to diagnosis long and frustrating for many patients. The committee stresses that health care providers should acknowledge ME/CFS as a serious illness that requires timely diagnosis and appropriate care. [1] Having said that, I am obviously delighted by this study for a whole host of reasons. A diagnostic test will be hugely beneficial in driving home the message that it is not, in fact, an imaginary condition. It will also be beneficial in testing treatment outcomes, as the lack of a test has made gauging treatment efficacy very challenging. There are a lot of hurdles to overcome yet, but we are FINALLY on the right path. [1] Quotes contained in the Key Brief PDF - http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.asp...

jdietrich 7y ago

>Millions of people (in the US alone!) suffer from this illness and I think everyone has wondered, or heard it wondered, if it's imaginary. For all these people to know there's something actually physically wrong with them is massive. IMO the broader issue is the stigma against mental illness. The leading hypothesis remains that chronic fatigue syndrome is a mental illness. Both your comment and the linked article imply a false dichotomy between "real" physical illness and "imaginary" mental illness. Mental illnesses are every bit as "real" as physical illnesses. They cause real suffering, real disability and real death. If chronic fatigue syndrome happens to have a psychological etiology, then sufferers still deserve compassion, effective treatment and proper research. The research in question has a relatively small sample size and only compares CFS patients with healthy volunteers. Identifying abnormalities in immunological or stress-response functioning may not be particularly useful in proving that CFS is "real" (i.e. non-psychological), because we have identified similar abnormalities in patients with depressive disorders. Some researchers argue that major depressive disorder may be an autoimmune disorder, although this is far from a mainstream opinion. https://doi.org/10.1073/pnas.1901274116 https://doi.org/10.1073/pnas.1901274116 https://doi.org/10.1371/journal.pone.0138904 https://doi.org/10.1371/journal.pone.0138904 https://doi.org/10.1016/j.it.2005.11.006 https://doi.org/10.1016/j.it.2005.11.006 https://doi.org/10.1016/j.pnpbp.2004.11.003 https://doi.org/10.1016/j.pnpbp.2004.11.003

GordonS 7y ago
I don't think CFS is a mental illness, and I haven't seen evidence that that's the "leading hypothesis" (I've been diagnosed with CFS, although that was before I was later diagnosed with nerve damage), so this is something I've read deeply on. CFS can absolutely cause mental illness though - constant fatigue, and sometimes pain, can take a terrible toll.
- cpncrunch 7y ago
  The evidence shows that CFS is triggered by stress or viral infections (which are physiologically stressful), and that it is associated with dysruptions to the HPA axis. Everyone I know who has recovered (including myself) has said that dealing with psychological issues is the most important factor in recovering.

sagebird 7y ago

I would like to see controls that make an attempt to differentiate psychogenic causes. IE if you paid 20 people who do not claim to have chronic fatigue syndrome but have depression to fake having chronic fatigue syndrome for two months- eg watch tv on a couch, then they were tested, I wonder if they would not have the biomarkers. Likewise, I would like to see how people who claim to have fibromyalgia would do on this test. I don’t think a biomarker adds much to the debate on the legitimacy, unless experiment and controls are carefully designed. How would people react if there were a biomarker for people who have reported a UFO sighting? Would we finally declare their ufo sighting reports to be accurate?

GordonS 7y ago
> fake having chronic fatigue syndrome for two months- eg watch tv on a couch If that's what you think CFS is like, you should do some reading before posting something so obviously insulting.
- deleted 7y ago
  [deleted]
stordoff 7y ago
> have depression to fake having chronic fatigue syndrome for two months- eg watch tv on a couch If you think this is what CFS is, you clearly have no idea. Have you even fallen asleep while eating a meal, despite having a good night's sleep the night before? Have you even slept for 18 hours because you have had the audacity to go to collage for three hours? Someone I know does on a routine basis. > Would we finally declare their ufo sighting reports to be accurate? No, but we might ask if there is some underlying connection that causes them to perceive UFOs (also, comparing probably illusionary UFO sightings to obvious, observable [regardless of cause] symptoms is rather insulting).
rmtech 7y ago
yeah, I think this should be repeated several times & with some better controls such as people who are bedridden for a different reason.

AdamCraven 7y ago

As someone who has suffered from CFS for a long time, it is definitely not imaginary. To say it’s purely physical is discounting the mental aspect of the disease. I personally suffered trauma as a child and I’ve seen first hand what strong negative emotions can do to the body. I would think it unlikely that there will be a miracle drug that will cure it, I believe it is a disease of both the mental and physical. For anyone affected by CFS and think that trauma may play a part, the book “The Body Keeps the Score” has helped me get more energy and control back.

rfugger 7y ago
I don't disagree, but I still have hope. Most CFS cases come on suddenly with an infection, and something breaks in the body. That situation may have been brought on by a gradual weakening of the system over time due to stress, etc., but that doesn't mean that whatever has broken can't be fixed or reset in some way.