Biomarker for chronic fatigue syndrome identified(med.stanford.edu)
med.stanford.edu
Biomarker for chronic fatigue syndrome identified
http://med.stanford.edu/news/all-news/2019/04/biomarker-for-chronic-fatigue-syndrome-identified.html
227 comments
Keep in mind that CFS is a currently a diagnosis of exclusion - many people labelled with CFS may in fact have another, undiagnosed illness.
For example, it's been found that a lot of CFS (and fibromyalgia) patients turn out to have small fiber neuropathy (damage to he nerve fibers that signal pain), and neurotoxins have been shown to cause general fatigue (I'm in mobile, so no references for now I'm afraid).
The skin biopsy test for small fiber neuropathy isn't routinely done because there aren't that many labs capable of testing the sample, and it's relatively expensive. Of course, for all we know neuropathy could be a symptom of CFS... but the point is there is a lot of cross-over, and there is no diagnostic test specifically for CFS.
For example, it's been found that a lot of CFS (and fibromyalgia) patients turn out to have small fiber neuropathy (damage to he nerve fibers that signal pain), and neurotoxins have been shown to cause general fatigue (I'm in mobile, so no references for now I'm afraid).
The skin biopsy test for small fiber neuropathy isn't routinely done because there aren't that many labs capable of testing the sample, and it's relatively expensive. Of course, for all we know neuropathy could be a symptom of CFS... but the point is there is a lot of cross-over, and there is no diagnostic test specifically for CFS.
I found out last year the root cause of my CFS is life-long mercury toxicity (a well understood neurotoxin). I am responding very positively to treatment.
I rarely talk about it because people get very upset when I tell them about the evidence of where the mercury came from.
I rarely talk about it because people get very upset when I tell them about the evidence of where the mercury came from.
I don't get angry like some people about "anti-vaxxers", but the reason I am not one, is because I think that if low levels of mercury were a major health issue, then it would be apparent in large populations that consume a relatively large amount of mercury-containing seafood. e.g. Japan. And in Japan, there have also, as it happens, been incidents of acute mercury poisoning with significant numbers of people, so the difference between toxic and non-toxic levels is clear.
Yes, data on mercury toxicity is quite clear that vaccines as safe.
However it's unfortunately easy to find sham "doctors" that will diagnose whatever the patient requests - mercury poisoning, EBV, chronic lyme disease, just pay in full and all your beliefs will be confirmed! Just don't look too closely at the placebo, er, cure...
However it's unfortunately easy to find sham "doctors" that will diagnose whatever the patient requests - mercury poisoning, EBV, chronic lyme disease, just pay in full and all your beliefs will be confirmed! Just don't look too closely at the placebo, er, cure...
Well, there are lots of rare diseases, and mercury could be a factor in some of them. That doesn't mean they are imaginary. It's more of a definitional/philosophical issue, that some other factor is essential as well, so it's not right to attribute the problem only to mercury.
The distinction I'm making is that I am pretty sure low level mercury is not an issue like lead from gasoline, although I can imagine evidence that would change my mind. If it was, we should be able to see blatant differences in large populations, just like we see with lead and violent crime.
The distinction I'm making is that I am pretty sure low level mercury is not an issue like lead from gasoline, although I can imagine evidence that would change my mind. If it was, we should be able to see blatant differences in large populations, just like we see with lead and violent crime.
I'm also pretty sure that peanut butter is not an issue, but it does kill some people. Maybe there are people out there who are ultra-sensitive to mercury.
True, but people with deadly peanut allergies are still completely fine when peanuts aren't around... I can't imagine why vaccine mercury would explain life-long CFS.
There is a compelling theory that when a child is simultaneously exposed to injected mercury along with another stressor, the mercury is not excreted as it normally would be.
It's all kind of moot though because mercury is no longer in child-hood vaccines. I really don't see the point in bringing the discussion of vaccinations into this since almost no one can have a rational discussion about them.
It's all kind of moot though because mercury is no longer in child-hood vaccines. I really don't see the point in bringing the discussion of vaccinations into this since almost no one can have a rational discussion about them.
Just wanted to add that I made this post to throw life-lines out to those who are suffering with the same illness as I am. This was not meant to be an invitation to healthy people to debate the merits of my diagnosis. I don't think healthy people can really understand this illness. It takes an immense amount of research and dedication to wrap your head around what's really going on. I gave up everything in my life to focus on studying my illness for over a decade. I'm talking 80-100 hour weeks for years and years. It just doesn't make sense to argue with people who haven't put in a similar amount of time and effort.
Nice curiosity gap there. Where did the mercury come from?
IMO he is clearly implying it came from a vaccine(s) but he is trying to do it without being seen as an anti-vaxxer.
Surely you'd have to have a lot of vaccines for it to compare to the amount you get from other sources (mostly seafood afaik?)
Yes. One vaccine contains less mercury than one (average) serving of fish, and the mercury is in a less toxic form.
Not even just a "form". Thimerisol is a compound. I like to compare it to saying we shouldn't eat table salt because it contains chlorine.
Now, as to the safety of Thimerisol, obviously that has to be judged on its own merits, but just because a compound "contains" a certain kind of atom, by itself means nothing.
Now, as to the safety of Thimerisol, obviously that has to be judged on its own merits, but just because a compound "contains" a certain kind of atom, by itself means nothing.
Why would I be an anti-vaxxer? Mercury is not in any childhood vaccines.
Because mercury toxicity is a common claim of anti-vaxxers and because you implied the alleged source of the mercury which caused your CFS is something that upsets most people. Doesn't seem like that much of a stretch to think that you're referring to vaccines.
If you were less weirdly cryptic about it, we could just have a normal exchange and perhaps I'd learn something new. Perhaps you instead believe it's from seafood and people don't like hearing that they shouldn't be eating fish, IDK.
What exactly is the source of the mercury that you're referring to? You accuse others of not being able to have rational/intelligent conversation in this thread, yet you haven't even stated your basic premise, just trolled and then acted like a victim when people got annoyed with your coyness.
If you were less weirdly cryptic about it, we could just have a normal exchange and perhaps I'd learn something new. Perhaps you instead believe it's from seafood and people don't like hearing that they shouldn't be eating fish, IDK.
What exactly is the source of the mercury that you're referring to? You accuse others of not being able to have rational/intelligent conversation in this thread, yet you haven't even stated your basic premise, just trolled and then acted like a victim when people got annoyed with your coyness.
Going to assume given the way this is phrased that the poster means a vaccination.
Belatedly, FWIW, I guessed dental fillings.
I had mine replaced ages ago. Haven't considered testing my mercury levels. Maybe I should.
I had aplastic anemia as a kid, cause unknown, treated with a bone marrow transplant (before they had means to isolate stem cells).
I had mine replaced ages ago. Haven't considered testing my mercury levels. Maybe I should.
I had aplastic anemia as a kid, cause unknown, treated with a bone marrow transplant (before they had means to isolate stem cells).
Yea I've talked to hundreds of people who have had success with removing amalgam fillings. This was not my issue though.
I posted above about a test you can do. Feel free to write me at jbob286 (aat) gmail if you'd like more info. I can point you to a bunch of free resources that can help guide you through the process.
I posted above about a test you can do. Feel free to write me at jbob286 (aat) gmail if you'd like more info. I can point you to a bunch of free resources that can help guide you through the process.
Where did the mercury come from?
yeah you have to be careful with the amount of fish you eat these days, the long living predatory ones tend to accumulate a lot over the time in tissues
Do tell please, it would be educating for all of us. Hopefully you’ll find a less negative reception in this thread.
I have confirmed mercury toxicity through hair analysis, which is controversial and difficult to interpret. It is described in depth by an Princeton trained biochemist, Andrew Cutler, in his book, Hair Test Interpretation: Finding Hidden Toxicities.
This diagnosis has been confirmed by a dramatic improvement of symptoms upon treating specifically for mercury toxicity with low-dose chelation therapy.
My symptoms began when I was a baby. Before I ever ate any tuna. Before I was anywhere near a mercury thermometer. I've never had amalgam fillings. I've never been exposed to a mercury spill to my knowledge.
These are the facts that I am 100% certain on.
This diagnosis has been confirmed by a dramatic improvement of symptoms upon treating specifically for mercury toxicity with low-dose chelation therapy.
My symptoms began when I was a baby. Before I ever ate any tuna. Before I was anywhere near a mercury thermometer. I've never had amalgam fillings. I've never been exposed to a mercury spill to my knowledge.
These are the facts that I am 100% certain on.
I'm already being down voted and I've said nothing but what has been rigorously verified as the root cause of my illness. It's impossible to discuss this intelligently on public forums.
You're being down voted because you're being unnecessarily vague. I dug through your comment history and you haven't mentioned it before, so it's not this community that you've had a bad response from before. (Unless you made a new account?).
I made a new account and I am trying to avoid absolutely destroying the karma on this one.
just spit it out, please
I'd love to know what the source was! It might help my kids someday.
wavepruner, what exactly are you using for chealation? Please mention things like where you are getting your treatment, and how many sessions did it take to show positive results.
I specifically follow Andrew Hall Cutler's frequent low-dose chelation protocol.
This is all done in 3-10 day rounds. I started with 1mg DMPS every 8 hours and saw rapid improvement of many symptoms within a few rounds. I worked my way up to 10mg DMPS and added ALA every 3 hours currently at 1mg.
I take many supplements which facilitate healing. It is unlikely that one would see rapid improvement without a proper supplement regimen.
I'm currently using 3mg DMSA only due to DMPS supply issues. I get many side-effects from DMSA so progress has slowed recently.
I've completed 37 rounds and have been chelating for just over a year. I know several people who are claiming near 100% remission of their symptoms after 2-6 years of chelation.
ALA is easy to obtain as it is regulated as a supplement. It is very dangerous to take in the doses normally sold if you are mercury toxic. DMPS/DMSA are prescription only, but is easy to get.
There is another product that I am going to try soon. They make dramatic marketing claims which makes me suspicious, but the science behind it is compelling once you dig past all the bullshit. It is called TRS annd is manufactured by Coseva.
Feel free to write me at jbob286 (aat) gmail if you have questions. I can point you to a bunch of free resources.
This is all done in 3-10 day rounds. I started with 1mg DMPS every 8 hours and saw rapid improvement of many symptoms within a few rounds. I worked my way up to 10mg DMPS and added ALA every 3 hours currently at 1mg.
I take many supplements which facilitate healing. It is unlikely that one would see rapid improvement without a proper supplement regimen.
I'm currently using 3mg DMSA only due to DMPS supply issues. I get many side-effects from DMSA so progress has slowed recently.
I've completed 37 rounds and have been chelating for just over a year. I know several people who are claiming near 100% remission of their symptoms after 2-6 years of chelation.
ALA is easy to obtain as it is regulated as a supplement. It is very dangerous to take in the doses normally sold if you are mercury toxic. DMPS/DMSA are prescription only, but is easy to get.
There is another product that I am going to try soon. They make dramatic marketing claims which makes me suspicious, but the science behind it is compelling once you dig past all the bullshit. It is called TRS annd is manufactured by Coseva.
Feel free to write me at jbob286 (aat) gmail if you have questions. I can point you to a bunch of free resources.
Do you eat 20 cans of tuna a day?
When I was much younger I ate 1-2 cans of tuna pretty much every day for few years and I didn’t have any ill effect at all.
TIL that HN people like tuna less than no-vax. Probably you should taste a proper one, not that awful mess that sell in 90% of the world.
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Did you just like the taste?
He's a tigershark, of course he likes the taste of tuna. Duh.
Thanks for the paper link. I read the paper and it's really a semiconductor sensor engineering paper, not a biology paper. The paper seems very preliminary; it shows that CFS and non-CFS sample have widely different impedances under osmotic stress, but the mechanism behind this is entirely hand-waving.
If I'm reading the paper correctly, the samples were peripheral blood mononuclear cells (i.e. lots of different cell types) in their own plasma. It would be nice to have samples that weren't so heterogeneous, since it's unclear what type of cell is causing the effect, or if it is something in the plasma.
It would be nice if the paper gave the actual measured resistances, rather than % deviation from normalized impedance which is an unusual unit. The paper's use of machine learning seems entirely pointless, basically drawing the obvious line between the two sets of points.
The discussion section didn't seem to have anything concrete. It reminded me of a patent application where you try to list everything that might possibly turn out to be vaguely related.
I apologize for the negativity; the paper's result is very exciting so I hope it pans out, but I found the paper itself disappointing.
If I'm reading the paper correctly, the samples were peripheral blood mononuclear cells (i.e. lots of different cell types) in their own plasma. It would be nice to have samples that weren't so heterogeneous, since it's unclear what type of cell is causing the effect, or if it is something in the plasma.
It would be nice if the paper gave the actual measured resistances, rather than % deviation from normalized impedance which is an unusual unit. The paper's use of machine learning seems entirely pointless, basically drawing the obvious line between the two sets of points.
The discussion section didn't seem to have anything concrete. It reminded me of a patent application where you try to list everything that might possibly turn out to be vaguely related.
I apologize for the negativity; the paper's result is very exciting so I hope it pans out, but I found the paper itself disappointing.
This is less a criticism of the paper than it is a statement of misaligned expectations.
> but the mechanism behind this is entirely hand-waving.
The objective of this paper was not to specify, or even attempt to specify, the mechanism.
> The paper's use of machine learning seems entirely pointless, basically drawing the obvious line between the two sets of points.
Yeah, that is pretty much the entire objective of SVMs.
> but the mechanism behind this is entirely hand-waving.
The objective of this paper was not to specify, or even attempt to specify, the mechanism.
> The paper's use of machine learning seems entirely pointless, basically drawing the obvious line between the two sets of points.
Yeah, that is pretty much the entire objective of SVMs.
> Yeah, that is pretty much the entire objective of SVMs.
Which is hard to do by hand in many dimensions but almost trivial in 2. I haven't read the paper but maybe the OP is complaining about something like that?
Which is hard to do by hand in many dimensions but almost trivial in 2. I haven't read the paper but maybe the OP is complaining about something like that?
Yes, the data is essentially 1-dimensional and looks like "CCC MMMMMMMM". (Seriously, look at Figure 2 graph H in the paper.) It seems entirely gratuitous to use machine learning to build a SVM classifier to separate the C's from the M's, when it's obvious that the C's are on the left and the M's on the right.
Perhaps the use of machine learning helped to acquire funding, or enabled the researchers to acquire skills for future projects.
> samples were peripheral blood mononuclear cells
Yeah, I was expecting to see flow cytometric cell sorting (1) for monocytes on CD14 and CD64 (2), which I would believe to be monocytes.
The "sample preparation" procedure they describe (3) is ... somewhat lacking in specificity. They pelletized the sample three times. I'm not even sure those cells are intact, and, mechanistically, the sample no doubts includes granulocytes, lymphocytes, and monos, so who knows what's going on there.
(1) https://www.labome.com/method/Flow-Cytometry-and-Cell-Sortin...
(2) https://www.ncbi.nlm.nih.gov/pubmed/9844593
(3) https://www.pnas.org/content/pnas/suppl/2019/04/25/190127411...
Yeah, I was expecting to see flow cytometric cell sorting (1) for monocytes on CD14 and CD64 (2), which I would believe to be monocytes.
The "sample preparation" procedure they describe (3) is ... somewhat lacking in specificity. They pelletized the sample three times. I'm not even sure those cells are intact, and, mechanistically, the sample no doubts includes granulocytes, lymphocytes, and monos, so who knows what's going on there.
(1) https://www.labome.com/method/Flow-Cytometry-and-Cell-Sortin...
(2) https://www.ncbi.nlm.nih.gov/pubmed/9844593
(3) https://www.pnas.org/content/pnas/suppl/2019/04/25/190127411...
The use of machine learning needs to be explained. I’m half expecting it to boil down to “we evolved the neural nets until it perfectly separated the two groups” — overfitting “learning”.
I also had that impression at first but it seems that they are just using Support Vector Machines to draw the separating boundary between the two group of points.
If you look at the graphs by eye, there is an extremely obvious divide. SVM just let them find it automatically, but if you gave a human those graphs, they could instantly point out where the line is.
Why does it need to be explained if the test can be proven to be extensible? Asprin worked for nearly 100 years before anyone had any clue how (ditto with many, many more modern drugs).
To me different impedances implies different electrolyte concentrations. That's my EE perspective, at least.
I’m also very interested in seeing how strong the effect is when tested on mild and moderately ill patients. I hope they follow up with that. (The study group OMF have been using has been 20 severely sick patients, which is a good plate to start.)
I have to agree with you here - the separation is too good. You just never get anything in the real world that works this well with complex diseases.
This is true, but everything is complex only up to the point when you begin to understand it. Scurvy was a complex disease until the discovery that it was cured and prevented by citrus fruit(1). Now we have the technology to skip right to the discovery of vitamin C, a miraculous 100% accurate test for scurvy.
I know I'm oversimplifying, but I think the point is valid. This is why discovery of a biomarker is so crucial -- it begins to "decomplexify" the disease so we can properly define it and start to find treatments for it.
(1) Ok, it's never really that simple: http://mentalfloss.com/article/24149/how-scurvy-was-cured-th...
I know I'm oversimplifying, but I think the point is valid. This is why discovery of a biomarker is so crucial -- it begins to "decomplexify" the disease so we can properly define it and start to find treatments for it.
(1) Ok, it's never really that simple: http://mentalfloss.com/article/24149/how-scurvy-was-cured-th...
Maybe link to the original blog article [1], your link is just a summary.
[1] http://idlewords.com/2010/03/scott_and_scurvy.htm
[1] http://idlewords.com/2010/03/scott_and_scurvy.htm
Thanks -- I just copied the first link I found in a search engine.
It is suspicious but look at the scatterplots: https://www.pnas.org/content/pnas/early/2019/04/24/190127411... It really is pretty much perfect separation on their metric. When the effect size is that large...
One thing that would be interesting to investigate in the future would be to see how the test behaves for CFS patients who are not as severely ill, or for non-CFS patients that are currently ill from a different disease.
Exacly, just sorting it would show it better, it feels like it should just output percentage with (arbitrary/based on population %age/whatever) threshold that is outside of the test.
AIDS was once considered a very complex disease, but it has a very accurate (HIV) test today. My big concern would be if, like cancer, there are really many diseases and Chronic Fatigue symptoms are common, not differentiating.
AIDS, like CFS, was never considered a disease in the medical sense. They both are called “syndrome”, which is medical short-hand for “interesting enough to study further, but frankly, we don’t know shit about what’s causing this”.
https://en.wikipedia.org/wiki/Syndrome: ”A syndrome is a set of medical signs and symptoms that are correlated with each other and, often, with a particular disease or disorder.”
That’s why AIDS became “HIV infection” when medical science discovered what caused AIDS.
If this research gets confirmed, and a mechanism is found, that will happen here, too.
However, as you say, if that happens, there’s a good chance there are people currently diagnosed with CFS who don’t show this biomarker.
If so, those people run the risk of getting stigmatized even more than current CFS sufferers do.
The real solution to that problem, I think, would be for the world to accept that, if you have a mental problem, a) that doesn’t imply you put it there, and b) it doesn’t imply you should be able to get it out without outside help.
Only a few centuries ago, people were being blamed of being “unfaithful to god” when they got sick, be it due to a bacterial infection or due to mental illness. I see blaming people for their mental problems as a remnant of that.
https://en.wikipedia.org/wiki/Syndrome: ”A syndrome is a set of medical signs and symptoms that are correlated with each other and, often, with a particular disease or disorder.”
That’s why AIDS became “HIV infection” when medical science discovered what caused AIDS.
If this research gets confirmed, and a mechanism is found, that will happen here, too.
However, as you say, if that happens, there’s a good chance there are people currently diagnosed with CFS who don’t show this biomarker.
If so, those people run the risk of getting stigmatized even more than current CFS sufferers do.
The real solution to that problem, I think, would be for the world to accept that, if you have a mental problem, a) that doesn’t imply you put it there, and b) it doesn’t imply you should be able to get it out without outside help.
Only a few centuries ago, people were being blamed of being “unfaithful to god” when they got sick, be it due to a bacterial infection or due to mental illness. I see blaming people for their mental problems as a remnant of that.
On the other hand, there are times when blaming people for their misfortune is appropriate, and serves a social purpose. The hard part is telling when it is appropriate. It does seem pretty clear though that we tend to both give ourselves too much credit for our successes, and too much blame for our failures, overall.
My impression is that people give themselves the credit for their successes, and blame somebody else for their failures.
My successes are due to my moral worth, and others' failures are due to their moral failings.
My successes are due to my moral worth, and others' failures are due to their moral failings.
That could still be very interesting. Eg. There are some other illnesses like MS where patients can get fatigued in a similar way to CFS, but not always. If we find a similar response between the fatigued and non fatigued MS patients for example, that could still point to something that is going on causing the fatigue in both cases. Ron Davis’s line on this was to point out having one disease doesn’t mean you can’t have any others.
There are a lot of other interesting overlaps showing up. One of the more interesting to me (because I have it) is that about 40% of CFS patients are testing positive for small fiber polyneuropathy on punch biopsies that appear to be autoimmune in origin. Is that itself an underlying cause of some 40% of CFS cases or is it just a common comorbid condition that whatever triggers CFS also triggers?
There are a lot of other interesting overlaps showing up. One of the more interesting to me (because I have it) is that about 40% of CFS patients are testing positive for small fiber polyneuropathy on punch biopsies that appear to be autoimmune in origin. Is that itself an underlying cause of some 40% of CFS cases or is it just a common comorbid condition that whatever triggers CFS also triggers?
I've done a lot of reading on CFS and fibromyalgia, and this has been my opinion too.
For starters, these are both diagnosis of exclusion; these labels are also used by lazy doctors who lack a deeper understanding of their field (anecdotally, both personal and otherwise), or who are reluctant to run expensive tests for rarer conditions; and many people with these conditions have been found to have small fiber neuropathy.
For starters, these are both diagnosis of exclusion; these labels are also used by lazy doctors who lack a deeper understanding of their field (anecdotally, both personal and otherwise), or who are reluctant to run expensive tests for rarer conditions; and many people with these conditions have been found to have small fiber neuropathy.
Who care is the separation is "too good." It's a lead. This is what science is. You find leads and followup on them. Lots of dead ends in the process.
You should care if it “too good” because it could be a sign of overfitting or tampering with data during analysis to reach a desired conclusion. Replication should shed some light here.
Of course skepticism is warranted however an important distinction to make is that they are measuring a whole cell phenotype, rather than some surrogate such as gene expression or a circulating molecule. I work on cancer biomarkers, and phenotypic readouts work much better than you might expect.
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Journalists, this is quite the story. Here you have a bunch of really sick patients with docs around the world saying it's in there head. Then a UK study comes out (PACE) saying patients should engage in activity to help themselves. This only makes the patients worse and eventually so bad that the study was pulled.
In comes dr ron davis. His son acquired me cfs while traveling in india. Completely unsatisfied with the lack of care provided by his doctors, he ventured off to research the disease himself assembling a team of esteemed scientists. They all begin to promptly kick ass and take names making more headway on understanding the disease more than anytime in history. Meanwhile, they have open conferences which are posted on YouTube for patients to watch (and see hope) and other scientists to learn from.
Davis and his collaborators discover all sorts of cfs links and debunk a bunch of myths.really interesting research is occurring on trypanosomes, metabolic traps, and the microbiome. Eventually a large signal is found when the cells are stressed and voila, we arrive at the test mentioned in the link.
This folks is how science is supposed to unfold and it all happening right in front of our eyes for everyone to see in real time. Quite astonishing. These folks will eventually win the Nobel, im sure of it.
In comes dr ron davis. His son acquired me cfs while traveling in india. Completely unsatisfied with the lack of care provided by his doctors, he ventured off to research the disease himself assembling a team of esteemed scientists. They all begin to promptly kick ass and take names making more headway on understanding the disease more than anytime in history. Meanwhile, they have open conferences which are posted on YouTube for patients to watch (and see hope) and other scientists to learn from.
Davis and his collaborators discover all sorts of cfs links and debunk a bunch of myths.really interesting research is occurring on trypanosomes, metabolic traps, and the microbiome. Eventually a large signal is found when the cells are stressed and voila, we arrive at the test mentioned in the link.
This folks is how science is supposed to unfold and it all happening right in front of our eyes for everyone to see in real time. Quite astonishing. These folks will eventually win the Nobel, im sure of it.
As a cautionary note, consider the Whittemore Peterson Institute for Neuro-Immune Disease. It was founded by parents of a CFS patient to research CFS. In 2006, this institute found the XMRV virus in CFS patients, showing a physical basis for CFS and the potential for a cure. Unfortunately, XMRV turned out to be a lab contaminant, leading to retracted publications, people being fired, and a big mess.
Of course, this indicates nothing about the current result, which hopefully pans out.
Of course, this indicates nothing about the current result, which hopefully pans out.
Humans making mistakes is nothing new. This is why the open medical foundation is so open; other people can critique and replicate the work if desired.
Many CFS patients have learned the hard way about the outcome of the PACE study, and many have found the methods of the study itself to be deeply questionable.
Even today the NICE guidance and doctors both still recommend exercise - despite many CFS patients having found out the hard way about the damage it can cause.
The NICE guidance is currently under review, with new guidance due to be issued in 2020. But appointment of certain panel members has been viewed with hostility by some CFS patients, and it's far from clear whether the new guidance will actually change its stance on exercise.
Even today the NICE guidance and doctors both still recommend exercise - despite many CFS patients having found out the hard way about the damage it can cause.
The NICE guidance is currently under review, with new guidance due to be issued in 2020. But appointment of certain panel members has been viewed with hostility by some CFS patients, and it's far from clear whether the new guidance will actually change its stance on exercise.
What kind of harm does exercise do? Can you refer to any sources?
It leads to worsening of the illness.
A CFS patient who goes beyond the boundaries of his energy reservers shrinks these.
That leads to smaller and smaller energy reservers, till you can't get out of the bed, sit upright, read longer text, type longer comments.
It aggravates the symptoms of CFS (fatigue, pain, headaches, etc). It can last multiple days after exercise. (Source: I know a person who suffers from CFS)
I had CFS that originated as a post viral illness after Epstein Barr Virus. The kicker is that I was in the military when this happened. By Tuesday every week, after 2 PT sessions, I was on a downhill slope. If I did a third session on Wednesday it was likely I was spending 5-7 days in bed. I'd been hospitalised for exhaustion.
I had every medical test under the sun and everything came back negative except my recent markers for EPV. I was lucky, my OC signed off for me to not to exercise and I didn't do PT for 9 months. During this period my CFS very slowly got better and I appear to be mostly better now.
You don't want to get CFS while in Army
I had every medical test under the sun and everything came back negative except my recent markers for EPV. I was lucky, my OC signed off for me to not to exercise and I didn't do PT for 9 months. During this period my CFS very slowly got better and I appear to be mostly better now.
You don't want to get CFS while in Army
not only days, it can be forever.
A quick google of "CFS exercise" lead me to few articles, this is the one I'm reading now:
https://www.npr.org/sections/health-shots/2017/10/02/5543693...
The information is sourced from the official CDC guidelines on ME/CFS: https://www.cdc.gov/me-cfs/index.html
The information is sourced from the official CDC guidelines on ME/CFS: https://www.cdc.gov/me-cfs/index.html
>Then a UK study comes out (PACE) saying patients should engage in activity to help themselves. This only makes the patients worse and eventually so bad that the study was pulled.
For those unaware, the PACE study is a famous for exposing the worst aspects of modern medicine. It twisted statistics and definitions to the point that patients whose conditioned worsened were declared cured, they fabricated death threats against themselves to discredit their critics, and are generally notable for the harm they inflicted upon patients and future research into CFS.
For those unaware, the PACE study is a famous for exposing the worst aspects of modern medicine. It twisted statistics and definitions to the point that patients whose conditioned worsened were declared cured, they fabricated death threats against themselves to discredit their critics, and are generally notable for the harm they inflicted upon patients and future research into CFS.
Wow, this really blew up. Thank you for your support.
Consider donating to the open medical foundation which funds a good portion of this research (i did).
https://www.omf.ngo/ways-to-donate/
Consider donating to the open medical foundation which funds a good portion of this research (i did).
https://www.omf.ngo/ways-to-donate/
really interesting research is occurring on trypanosomes, metabolic traps, and the microbiome.
Maybe I missed something, but can you point me to some of this?
Thanks.
Maybe I missed something, but can you point me to some of this?
Thanks.
Best wishes to dr R.Davis and his team - great job! My uncle suffers from Guillaine-Barre Syndrom (GBS) (or rather A-CIDP, but that still needs to be determined). I'm trying to educate myself on GBS and research newest treatment methods, but most resources/articles are paywalled. That does not help.
There is a certain website that allows you to bypass paywalls, All you need is the doi number.
Thanks!
>> This folks is how science is supposed to unfold and it all happening right in front of our eyes for everyone to see in real time. Quite astonishing.
So you imply that only scientists with money and direct personal interest in the research are supposed to work on the given topic?
So you imply that only scientists with money and direct personal interest in the research are supposed to work on the given topic?
Not at all. What i mean is that scientists discovered a problem and 1) pursued it regardless of what the major funding agencies thought of it 2) encouraged patients to get involved and 3) informed the public of their progress regularly allowing for open discussion and collaboration.
Amazing!
heavenlyblue(2)
That was the whole of science before about 1850.
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.
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.
>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/10.1371/journal.pone.0138904
https://doi.org/10.1016/j.it.2005.11.006
https://doi.org/10.1016/j.pnpbp.2004.11.003
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/10.1371/journal.pone.0138904
https://doi.org/10.1016/j.it.2005.11.006
https://doi.org/10.1016/j.pnpbp.2004.11.003
It isn't just that the suffering from mental illness is real, it causes very real physical health issues and deeply disrupts your body's hormonal makeup via the HPA axis.
The strict delineation between physiological and psychological illnesses is mostly a Western construct and the unfortunate effect is that the CFS community has an obsession with proving that it is a 100% physical illness without any mental component. It shouldn't be necessary for them to assert that for them to be taken seriously. The same can be said of chronic Lyme, Fibromyalgia, IBS, many kinds of chronic pain
One fascinating thing is that there are people with non-physiological dissociative seizures (classified as a DSM mental illness). This population is actually much less likely to admit that their mental wellbeing has an effect on the incidence of these seizures than patients with conventional ones
The strict delineation between physiological and psychological illnesses is mostly a Western construct and the unfortunate effect is that the CFS community has an obsession with proving that it is a 100% physical illness without any mental component. It shouldn't be necessary for them to assert that for them to be taken seriously. The same can be said of chronic Lyme, Fibromyalgia, IBS, many kinds of chronic pain
One fascinating thing is that there are people with non-physiological dissociative seizures (classified as a DSM mental illness). This population is actually much less likely to admit that their mental wellbeing has an effect on the incidence of these seizures than patients with conventional ones
Careful not to swing too far the other way. In situations where physical treatments are an option (even if they would only help, not cure), it is important not to give such treatments if it is a mental illness as treatments have risks. If it is mental, mental illness treatment might actually help.
If you look at the CFS forums they are trying all kinds of crazy experimental therapies, many of which have side-effects and few of which have any effects
Another interesting correlary is the pelvic floor dysfunction world. It is mostly a stress based illness which is best addressed by mental health treatment and relaxation but some people have gotten tons of invasive surgeries with reason to think they would even be helpful
Another interesting correlary is the pelvic floor dysfunction world. It is mostly a stress based illness which is best addressed by mental health treatment and relaxation but some people have gotten tons of invasive surgeries with reason to think they would even be helpful
The issue with CFS isn't to do with stigma against mental illness. It's with the mainstream medical community being uninterested in anything other than mental health treatments for a disease that clearly has a physical (viral/immune) component in the vast majority of cases. There are drugs for depression, and vast amounts of research has gone into their development. Why no similar research effort into drugs for CFS? It's not because we don't know what causes it -- we don't know what causes depression in many cases. It's not because there aren't enough sufferers -- there are millions. It's not because of lack of demand, or lack of existing costs to medical systems, or anything like that.
It's because the medical establishment doesn't really think CFS is a thing. They don't care about it, they don't pay attention to it, they don't see it as real. It's not a fatal disease in the same way that cancer is, and its symptoms sound like a teenager complaining about not wanting to go to school. The answer, as far as the medical establishment is concerned, is that nothing's really terribly wrong, buck up, and you'll be better soon. Oh, and take these antidepressants. Any mental illness inevitably brought on by being chronically physically ill (and not really believed) is pointed to as the underlying issue.
(I mean the above to represent how the medical community collectively sees CFS. There are certainly individuals within the community who take it very seriously. There are simply too few of them, and too few in positions of authority. And, to be fair, as I commented below, it can be very difficult to distinguish between CFS and a neurotic who just needs to be told they are fine and sent home, especially if you only have a very short time to interview them.)
It's upsetting, but it's easy to see how a bunch of what seem like tired, unhappy people with normal blood tests aren't leaping out as needing special attention. That's why a biomarker is massive. All of a sudden the medical community has to pay attention, will want to pay attention. It's a huge new drug market, if nothing else...
Let's hope this biomarker holds up under further tests. There's still a long way to go before I get too excited.
It's because the medical establishment doesn't really think CFS is a thing. They don't care about it, they don't pay attention to it, they don't see it as real. It's not a fatal disease in the same way that cancer is, and its symptoms sound like a teenager complaining about not wanting to go to school. The answer, as far as the medical establishment is concerned, is that nothing's really terribly wrong, buck up, and you'll be better soon. Oh, and take these antidepressants. Any mental illness inevitably brought on by being chronically physically ill (and not really believed) is pointed to as the underlying issue.
(I mean the above to represent how the medical community collectively sees CFS. There are certainly individuals within the community who take it very seriously. There are simply too few of them, and too few in positions of authority. And, to be fair, as I commented below, it can be very difficult to distinguish between CFS and a neurotic who just needs to be told they are fine and sent home, especially if you only have a very short time to interview them.)
It's upsetting, but it's easy to see how a bunch of what seem like tired, unhappy people with normal blood tests aren't leaping out as needing special attention. That's why a biomarker is massive. All of a sudden the medical community has to pay attention, will want to pay attention. It's a huge new drug market, if nothing else...
Let's hope this biomarker holds up under further tests. There's still a long way to go before I get too excited.
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.
CFS can absolutely cause mental illness though - constant fatigue, and sometimes pain, can take a terrible toll.
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.
Everyone I know who has recovered (including myself) has said that dealing with psychological issues is the most important factor in recovering.
Some evidence sure, not "the" evidence.
Unfortunately I don't know any CFS patients that have recovered, or even gone into remission; for everyone I know, it's been a chronic condition.
Unfortunately I don't know any CFS patients that have recovered, or even gone into remission; for everyone I know, it's been a chronic condition.
>Some evidence sure, not "the" evidence.
At least 4 studies that looked at it all found that it was triggered by stress or viral infection. If you're aware of any other contrary evidence, I'm interested.
>Unfortunately I don't know any CFS patients that have recovered, or even gone into remission; for everyone I know, it's been a chronic condition.
Here on HN there is myself and tomhoward for starters, and I know lots of other patients who have also recovered. We tend not to post too much in CFS forums, though, due to the negativity and hostility towards recovered patients.
At least 4 studies that looked at it all found that it was triggered by stress or viral infection. If you're aware of any other contrary evidence, I'm interested.
>Unfortunately I don't know any CFS patients that have recovered, or even gone into remission; for everyone I know, it's been a chronic condition.
Here on HN there is myself and tomhoward for starters, and I know lots of other patients who have also recovered. We tend not to post too much in CFS forums, though, due to the negativity and hostility towards recovered patients.
> viral infections (which are physiologically stressful)
There is evidence relating to viral infections, yes. But is it really necessary to refer to such infections being "physiologically stressful"? I just don't see the relevance of that.
> Here on HN there is myself and tomhoward for starters, and I know lots of other patients who have also recovered
Sorry, I didn't mean to imply recovery wasn't possible, but re-reading my comment I can see how it might have come across that way.
There is evidence relating to viral infections, yes. But is it really necessary to refer to such infections being "physiologically stressful"? I just don't see the relevance of that.
> Here on HN there is myself and tomhoward for starters, and I know lots of other patients who have also recovered
Sorry, I didn't mean to imply recovery wasn't possible, but re-reading my comment I can see how it might have come across that way.
>But is it really necessary to refer to such infections being "physiologically stressful"? I just don't see the relevance of that.
Viral infections activate the HPA axis...that is what is meant by "physiologically stressful". See:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1224723/
The relevance is that stress seems to be the common factor as a trigger, and the stress system seems to be dysfunctional in CFS.
Viral infections activate the HPA axis...that is what is meant by "physiologically stressful". See:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1224723/
The relevance is that stress seems to be the common factor as a trigger, and the stress system seems to be dysfunctional in CFS.
How did you recover? (Not an academic question. My wife has CFS.)
You can email me at cpncrunchhn at gmail dot com
You're right, I should've worded this more carefully.
What I meant is, there's people out there who dismiss this illness and I believe there's sufferers who have to fight to convince people that what they're going through is "real".
So for there to be physical evidence of something going on can only help everyone involved.
I didn't mean to suggest that without a clear physical marker that an illness isn't real, just that there are people who wrongly dismiss an illness without a physical marker.
What I meant is, there's people out there who dismiss this illness and I believe there's sufferers who have to fight to convince people that what they're going through is "real".
So for there to be physical evidence of something going on can only help everyone involved.
I didn't mean to suggest that without a clear physical marker that an illness isn't real, just that there are people who wrongly dismiss an illness without a physical marker.
> The leading hypothesis remains that chronic fatigue syndrome is a mental illness.
According to who? At least in the USA I see no evidence of that. The research is all pointing towards dysautonomia, dysimmunity, and metabolic issues.
According to who? At least in the USA I see no evidence of that. The research is all pointing towards dysautonomia, dysimmunity, and metabolic issues.
Those are all well known to be significantly influenced by stress, and all the evidence is pointing towards the stress system being central to CFS.
I disagree with your conclusion that it’s “the stress system”, but even if so, that’s not a mental illness then. Whatever is going on in CFS isn’t causing behavior or mood etc. changes. It’s causing physical changes, such as the measurable dysautonomia, measurable response on the 2day CPET, measurably response in the invasive CPET that Systrom has been doing, so on. Sure CFS patients do often get comorbid mental illness such as anxiety about their health and depression due to their illness, but you’ve got the direction inversed.
If you look at the evidence, all the studies so far show that CFS is triggered by stress and/or viral infections, and that the HPA axis is dysrupted. So it isn't my "conclusion", it's just what the evidence is showing.
Also, mental health is intrinsically linked to the stress system. Mental stress causes depression.
https://link.springer.com/article/10.1007/s00213-016-4218-9
If you talk to patients who have severe CFS and depression, you'll see that it isn't comorbid depression. Instead it is a fundamental symptom related to PEM. (See for example, Whitney Dafoe's description of his attacks). I had the same experience. The depression is not psychological (caused by thinking about the illness). Rather it is PEM, and comes on suddenly after exertion. That is not "comorbid".
Also, mental health is intrinsically linked to the stress system. Mental stress causes depression.
https://link.springer.com/article/10.1007/s00213-016-4218-9
If you talk to patients who have severe CFS and depression, you'll see that it isn't comorbid depression. Instead it is a fundamental symptom related to PEM. (See for example, Whitney Dafoe's description of his attacks). I had the same experience. The depression is not psychological (caused by thinking about the illness). Rather it is PEM, and comes on suddenly after exertion. That is not "comorbid".
I know the HPA axis has been an interesting line of investigation, but not everyone with CFS is showing up with HPA axis issues. I still disagree with the direction that the illness is primarily a mental illness simply because it can result in some mental symptoms. If primarily it is physical in nature, as measured on various tests, and in your case may be caused by an endocrinological dysfunction, and secondarily it causes changes in mood or behavior that doesn't make it a mental illness. (I'm familiar with PEM myself but do not have any severe mood change during it myself.)
Take for example African sleeping sickness. After initial infection the patients have a number of mood and behavior changes, excessive sleepiness, confusion, etc. that might appear mental. But it would be absurd to classify it as a mental illness. It sounds very similar to the logic people are applying to ME/CFS in trying to label it mental.
Take for example African sleeping sickness. After initial infection the patients have a number of mood and behavior changes, excessive sleepiness, confusion, etc. that might appear mental. But it would be absurd to classify it as a mental illness. It sounds very similar to the logic people are applying to ME/CFS in trying to label it mental.
The difference is that an organic cause has been found for sleeping sickness. Also, patients don't recover after psychological therapies, as they do with CFS. It's important to be open-minded to all etiologies.
And I never said it was "primarily mental". I think it is primarily stress, which can cause mental symptoms (but not always).
And I never said it was "primarily mental". I think it is primarily stress, which can cause mental symptoms (but not always).
The literature published over the last decade or so gives a highly biased picture, because people keep threatening to kill psychiatrists who research CFS. Understandably, most psychiatrists have abandoned the field for their own safety. Lots of people are researching biomedical factors, but nobody has identified a plausible biomedical etiology.
https://doi.org/10.1136/bmj.d3780
https://doi.org/10.1136/bmj.d3780
>people keep threatening to kill psychiatrists
No they don't. Several psychologists have made claims of harassment, all of which have been shown to be specious at best. In the UK at least the link between psychology and The Science Media Center has massively helped push the, dare I say it "fake news" of threats.
No they don't. Several psychologists have made claims of harassment, all of which have been shown to be specious at best. In the UK at least the link between psychology and The Science Media Center has massively helped push the, dare I say it "fake news" of threats.
There is no dangerous CFS militant movement that threatens to kill psychiatrists. There are just some psychiatrists who can't handle criticism and get their journalist friends to write these smear articles in the hopes it will silence their critics.
https://me-pedia.org/wiki/PACE_trial#Allegations_of_harassme...
https://me-pedia.org/wiki/PACE_trial#Allegations_of_harassme...
So your evidence that the leading hypothesis is mental illness is the debunked PACE trial which caused harm to a lot of patients in the form of contraindicated exercise and denial of benefits, among the emotional harm it created.
And then to go on to claim because there's lack of research into psychological factors that the absence of that research supports it being the leading hypothesis. Oh, and also it's the fault of these mean sick patients that this is the case.
https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome...
https://me-pedia.org/wiki/PACE_trial
And then to go on to claim because there's lack of research into psychological factors that the absence of that research supports it being the leading hypothesis. Oh, and also it's the fault of these mean sick patients that this is the case.
https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome...
https://me-pedia.org/wiki/PACE_trial
[deleted]
Can you please explain me how can be something that happens physically in white blood cells and their plasma a psychological illness?
Because your mind heavily affects the environment in which your cells live through hormonal and other system regulation (epigenetics). A mind that is constantly stressed (for example) causes your body to be in a different hormonal state than a mind that is relaxed. This in turn can (perhaps) lead to or sustain cell dysfunction (poor immune system response, etc). Mind and body are a system. This is not woo woo, this is documented but poorly understood (placebo effect for example).
Also, none of the above implies that the mind is the cause of all disease.
Also, none of the above implies that the mind is the cause of all disease.
> IMO the broader issue is the stigma against mental illness
Yeah yeah that rubbish again. I have mental illness (see my posts for boring details) and I've always been open about it, except when it's so obvious that people pick up on it without my assistance.
I've never had a problem. Stop saying there is a stigma. Any stigma may be down much more to the individual's anticipation of stigma which might cause them to not admit stuff, but my experience is society (UK anyway) is very tolerant of it. You're really not helping.
There's no frigging stigma for mental illness alone. If it causes someone to reek or act unpredictably there might be, but it's a reaction to the sad manifestations, not the illness per se.
NB. I contacted a company I'd previously contracted for, explained the situation, met some of the guys, became evidently stressed in front of them (people + noise get overwhelming quickly), and now I'm working for them. It gives me summat to do and to get used to social situations again, and they get a DB guy. Win/win! No drama.
So I repeat, STOP claiming this crap. You're making it harder for people who have to deal with it.
(Edit: no argument with the rest of your post)
Yeah yeah that rubbish again. I have mental illness (see my posts for boring details) and I've always been open about it, except when it's so obvious that people pick up on it without my assistance.
I've never had a problem. Stop saying there is a stigma. Any stigma may be down much more to the individual's anticipation of stigma which might cause them to not admit stuff, but my experience is society (UK anyway) is very tolerant of it. You're really not helping.
There's no frigging stigma for mental illness alone. If it causes someone to reek or act unpredictably there might be, but it's a reaction to the sad manifestations, not the illness per se.
NB. I contacted a company I'd previously contracted for, explained the situation, met some of the guys, became evidently stressed in front of them (people + noise get overwhelming quickly), and now I'm working for them. It gives me summat to do and to get used to social situations again, and they get a DB guy. Win/win! No drama.
So I repeat, STOP claiming this crap. You're making it harder for people who have to deal with it.
(Edit: no argument with the rest of your post)
> In my judgment, the 2017 regulations [...] were blatantly discriminatory against those with mental health impairments and which cannot be objectively justified. The wish to save nearly £1 billion a year at the expense of those with mental health impairments is not a reasonable foundation for passing this measure.
https://www.bailii.org/ew/cases/EWHC/Admin/2017/3375.html
Or in my sister's case, her employer not accepting a sick note because she is "making it up".
I've seen an autistic student being heckled by a member of staff as he should stop being such a baby.
There definitely is a stigma against mental illness. It may not be as bad as some people make out, but it's there.
https://www.bailii.org/ew/cases/EWHC/Admin/2017/3375.html
Or in my sister's case, her employer not accepting a sick note because she is "making it up".
I've seen an autistic student being heckled by a member of staff as he should stop being such a baby.
There definitely is a stigma against mental illness. It may not be as bad as some people make out, but it's there.
Regarding your link, I don't have time to read it (did skim it) but I'm talking about personal levels of discrimination, not governmental. If you want to talk about institutional discrimination, some may have it worse, I know a trans girl whose operation is being repeatedly pushed back. I can see why, given the strictures on NHS funding, but it really has made things miserable for her.
Your sister may have just had a shitty employer. Someone I knew told me of finding someone literally crying in pain due to RSI, and the employer's response was telling them to take painkillers. There are bad employers, for sure. Mine aren't.
Does your sister's experience invalidate mine? No. Does mine invalidate hers? No. We are stuck, perhaps on terminology of what discrimination is, or perhaps I've been very lucky. People have been extremely decent to me, that's all I can say.
My fear is that by talking up the alleged stigma, we're reinforcing or even creating it. I hope that makes sense.
Your sister may have just had a shitty employer. Someone I knew told me of finding someone literally crying in pain due to RSI, and the employer's response was telling them to take painkillers. There are bad employers, for sure. Mine aren't.
Does your sister's experience invalidate mine? No. Does mine invalidate hers? No. We are stuck, perhaps on terminology of what discrimination is, or perhaps I've been very lucky. People have been extremely decent to me, that's all I can say.
My fear is that by talking up the alleged stigma, we're reinforcing or even creating it. I hope that makes sense.
I have bipolar disorder. When I was depressed at uni and didn't sit my exams, my mum said "oh, so you couldn't be bothered then?" That's stigma against mental illness.
When my doctor signed me off for 28 days off work and my boss said, "how about taking it day by day? Wouldn't it be better for you to have something to do?" That's stigma against mental illness.
When I have to wait two months to see a consultant psychiatrist, that's stigma against mental illness. I wouldn't have to wait so long to see an oncologist, despite bipolar disorder having a higher chance of killing me quicker than some cancers.
When my doctor signed me off for 28 days off work and my boss said, "how about taking it day by day? Wouldn't it be better for you to have something to do?" That's stigma against mental illness.
When I have to wait two months to see a consultant psychiatrist, that's stigma against mental illness. I wouldn't have to wait so long to see an oncologist, despite bipolar disorder having a higher chance of killing me quicker than some cancers.
Surely the 'sad manifestations' are the whole point. If you have never been unable to work because of mental illness, or if you have been signed off but otherwise fairly treated by your employer, then I think you have dodged a bullet that many others haven't.
https://doi.org/10.1111/acps.12610
https://doi.org/10.1177/0840470416679413
https://www.ncbi.nlm.nih.gov/pubmed/16946807
https://doi.org/10.1177/0840470416679413
https://www.ncbi.nlm.nih.gov/pubmed/16946807
Studies: now that's a commendable rebuttal. I like that.
OK, I've skimmed these, let's take some quotes.
"People with lived experience of a mental illness commonly report feeling devalued, dismissed, and dehumanized by many of the health professionals with whom they come into contact"
People who have such problems too easily perceive slights that may not be there. I know this, I have to compensate for it. It's too easy to get hurt.
"On the other, they [people with serious mental illness] are challenged by the stereotypes and prejudice that result from misconceptions about mental illness"
And I just don't find this. Bar a few idiots, never have. I find people kind and considerate.
"As a result of both, people with mental illness are robbed of the opportunities that define a quality life: good jobs, safe housing, satisfactory health care, and affiliation with a diverse group of people"
Quite, but that loss in my case is not down to stigma or discrimination by others but my own shortcomings caused by the problems:
I don't have a good job, I haven't been able to work for months. That's not discrimination, that's because I'm unwell and just couldn't.
A while back I got so far behind with the rent (because I couldn't work) the landlord had every right to throw me out. That he didn't only reflected on his decency and trust in me, but for that I'd quite likely be on the streets.
This "affiliation with a diverse group of people" - I don't have that because, fuck, guess why? And loneliness is a terrible thing. I've had few partners in my life, guess again why? It's not because they discriminated against me, it's because I'm not 'normal' to be around (though getting better, thanks for asking). It's not discrimination, it's them picking the more suitable partner. And I just can't blame them!
Does that make sense?
Anyway, since I've read yours, please read mine. You sound like you do actual research, but unfortunately this nastiness is my life.
https://news.ycombinator.com/item?id=19767632
https://news.ycombinator.com/item?id=19767742
https://news.ycombinator.com/item?id=19767906
OK, I've skimmed these, let's take some quotes.
"People with lived experience of a mental illness commonly report feeling devalued, dismissed, and dehumanized by many of the health professionals with whom they come into contact"
People who have such problems too easily perceive slights that may not be there. I know this, I have to compensate for it. It's too easy to get hurt.
"On the other, they [people with serious mental illness] are challenged by the stereotypes and prejudice that result from misconceptions about mental illness"
And I just don't find this. Bar a few idiots, never have. I find people kind and considerate.
"As a result of both, people with mental illness are robbed of the opportunities that define a quality life: good jobs, safe housing, satisfactory health care, and affiliation with a diverse group of people"
Quite, but that loss in my case is not down to stigma or discrimination by others but my own shortcomings caused by the problems:
I don't have a good job, I haven't been able to work for months. That's not discrimination, that's because I'm unwell and just couldn't.
A while back I got so far behind with the rent (because I couldn't work) the landlord had every right to throw me out. That he didn't only reflected on his decency and trust in me, but for that I'd quite likely be on the streets.
This "affiliation with a diverse group of people" - I don't have that because, fuck, guess why? And loneliness is a terrible thing. I've had few partners in my life, guess again why? It's not because they discriminated against me, it's because I'm not 'normal' to be around (though getting better, thanks for asking). It's not discrimination, it's them picking the more suitable partner. And I just can't blame them!
Does that make sense?
Anyway, since I've read yours, please read mine. You sound like you do actual research, but unfortunately this nastiness is my life.
https://news.ycombinator.com/item?id=19767632
https://news.ycombinator.com/item?id=19767742
https://news.ycombinator.com/item?id=19767906
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.asp...
> 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.asp...
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.
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.
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.
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.
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.
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.
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.
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?
yeah, I think this should be repeated several times & with some better controls such as people who are bedridden for a different reason.
> 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.
If that's what you think CFS is like, you should do some reading before posting something so obviously insulting.
[deleted]
> 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).
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).
This sounds brilliant if it can be replicated. From what I've read and heard large parts of the medical establishment still treats ME/CFS patients as lazy/making it up. For there to be a positive diagnosis rather than a diagnosis of exclusion is the first step to getting these people the help they deserve.
This looks very promising, but it’s too early to say how accurate this test truly will be. Even if this papers methodology is replicated and the test again perfectly selects ME/CFS from healthy controls, it may perform terribly when used in a real clinical setting where the test has to distinguish CFS from the spectrum of other disorders that it will encounter.
In other words while the current paper suggests the tests sensitivity is likely to be high it’s much harder to come to any conclusion about it’s real world specificity.
In other words while the current paper suggests the tests sensitivity is likely to be high it’s much harder to come to any conclusion about it’s real world specificity.
I had CFS like symptoms so bad I was stuck in bed for several years and the doctor basically would not help me. Eventually I decided to treat it myself with antibiotics and anti parasitic medication. I basically came to the conclusion that for my specific case I had an unknown blood parasite and the fatigue was being caused by neurotoxins. I don't think all CFS are caused by an infection but mine definitely was and I have my life back. If you a researcher looking for a cure, try to test medications that flush neurotoxins out to see if the disease goes away and then try figuring out what is creating them in the first place to treat them.
If you are living with CFS i recommend giving https://cfsremission.com/ a look.
Crazy, I basically self diagnosed myself with CFS and got rid of my symptoms over time by discovering most of the recommendations on this page myself. I figured it had something to do with a funky immune system and gut bacteria, and changed my diet and took supplements and probiotics, and it's mostly gone. I even take bacopa, wild. This is really heartening to see that I was on the right track. My wife thinks I'm a hypochondriac with a bunch of placebos.
Woah, I’m now wondering if CFS might be what’s been wrong with me for a while, but I’m not sure. I definitely have terrible sleep, I can barely stay awake during meetings, and I have some of the other symptoms sometimes associated with this (tender lymph nodes in neck, IBS, tinnitus.)
I’ve been in and out of the doctor for a couple years, with weird pains, and most recently a lymph node that is a little enlarged in the neck. Obviously there are some scary (but unlikely) potential explanations. But, my sleep quality degrading over the years is something that has been happening much slower, and started much earlier.
Not a huge fan of self diagnosis but maybe some of the proposed dietary changes would be worth trying, since they seem fairly innocuous. I’m sure eating more apples won't hurt.
If anyone has experience with CFS and has advice, I’m all ears. I’d kill to sleep like I did when I was 18.
I’ve been in and out of the doctor for a couple years, with weird pains, and most recently a lymph node that is a little enlarged in the neck. Obviously there are some scary (but unlikely) potential explanations. But, my sleep quality degrading over the years is something that has been happening much slower, and started much earlier.
Not a huge fan of self diagnosis but maybe some of the proposed dietary changes would be worth trying, since they seem fairly innocuous. I’m sure eating more apples won't hurt.
If anyone has experience with CFS and has advice, I’m all ears. I’d kill to sleep like I did when I was 18.
The hallmark of CFS is post-exertional malaise, which is feeling terribly after exertion that is overly strenuous (for you). The onset of PEM can be a few hours, a day, or even a week or more after the exertion, so it can be very hard to pin down. The real way to tell is to cease exertions for a period and see if there is improvement in your symptoms. Contrast this with depression, where exercise will tend to improve your symptoms.
A second hallmark is unrefreshing sleep. Not necessarily that you don't sleep or don't sleep well, but that no matter how long or how well you sleep, you wake up feeling like you just ran a marathon. If you don't sleep well, see a sleep doctor. That may fix the issue.
A second hallmark is unrefreshing sleep. Not necessarily that you don't sleep or don't sleep well, but that no matter how long or how well you sleep, you wake up feeling like you just ran a marathon. If you don't sleep well, see a sleep doctor. That may fix the issue.
Create a spreadsheet of possible illnesses that cause the symptoms you have, and start working through what testing needs to be done to exclude them. A number you may be able to exclude off the bat because they don't fit well or you have recent testing from a physical that would exclude them (e.g. common cancers). Then working with your doctor to get tests to exclude the rest. Have you done a sed-rate test? (Often it is low <3 for ME/CFS, but normally nobody looks at it in that direction, they only look for it being a marker of inflammation if its high.) Have you had a sleep study to rule out sleep apnea for example? Have you checked yourself for orthostatic intolerance or POTS? (Easy to do with a pulse oximeter at home before worrying about official tests.) And so on. You'll find plenty of information at me-pedia to help you along the path of a differential diagnosis.
For anyone reading this that doesn't know what a "sed-rate test" is, it's an erythrocyte sedimentation test[0]
[0] https://en.wikipedia.org/wiki/Erythrocyte_sedimentation_rate
[0] https://en.wikipedia.org/wiki/Erythrocyte_sedimentation_rate
(I'm fully recovered from CFS, although I still have occasional mild IBS).
There is certainly an overlap between CFS, IBS, lymph nodes, pain, fatigue, sleep problems and tinnitus: they can all be caused by stress. The most likely explanation ("I can barely stay awake during meetings") is probably that you need a better job.
Having said that, you do need to rule out other explanations, such as cancer. Talk to your doctor and see what he/she thinks.
There is certainly an overlap between CFS, IBS, lymph nodes, pain, fatigue, sleep problems and tinnitus: they can all be caused by stress. The most likely explanation ("I can barely stay awake during meetings") is probably that you need a better job.
Having said that, you do need to rule out other explanations, such as cancer. Talk to your doctor and see what he/she thinks.
Meetings were just an example; I can barely stay awake period. My job is great, and my work life balance is good.
And of course, we are watching for cancer. It’s very unlikely at my age, but I definitely can’t rule it out.
And of course, we are watching for cancer. It’s very unlikely at my age, but I definitely can’t rule it out.
Do you have exactly the same symptoms when you take 2 weeks off work to go on holiday (say, after the first week)?
Yeah, last holiday I took I felt horrid the entire time. I actually had some fairly bad headaches and ended up getting tests done; they came back normal.
Headaches and fatigue typically happen after the stress, so if you do have a stressful job then it can take a few days or longer to recover.
Even if you like your job and you think it's great, that doesn't mean it isn't stressful. IMHO if you have meetings then your job isn't great, but maybe you're a strange person who enjoys meetings :)
Anyway, all I'm saying is to think carefully about your job and decide whether or not it is right for you.
Also worth getting a sleep study done, in case it is sleep apnea.
Even if you like your job and you think it's great, that doesn't mean it isn't stressful. IMHO if you have meetings then your job isn't great, but maybe you're a strange person who enjoys meetings :)
Anyway, all I'm saying is to think carefully about your job and decide whether or not it is right for you.
Also worth getting a sleep study done, in case it is sleep apnea.
You say you've seen the doctor, hopefully that included seeing a sleep specialist and having a sleep study done? Sleep apnea is very common, and people can have it even if they do not snore and are not overweight (although gaining weight is a major risk factor). And in earlier stages patients may not even have apneas, they just move out of deep sleep.
Maybe you've already been checked but I just thought I'd mention it since it's a very commonly overlooked diagnosis (an estimated 80% of cases are not diagnosed), and declining sleep quality and falling asleep during the day are major symptoms of it. I have a relative that eventually got treated and it made a major difference for them.
Maybe you've already been checked but I just thought I'd mention it since it's a very commonly overlooked diagnosis (an estimated 80% of cases are not diagnosed), and declining sleep quality and falling asleep during the day are major symptoms of it. I have a relative that eventually got treated and it made a major difference for them.
Why did they need machine learning? It seems from Figures 2B-G that there's a clear cut off.
"Moreover, to create a classifier for ME/CFS patients capable of identifying new patients, required for a robust diagnostic tool, we developed a trained kernel Support Vector Machine (SVM), a supervised machine-learning algorithm, using our experimental data. To classify new patients based on whether they fall to the right of the decision boundary, we initially selected the two features with the largest significance: change from the baseline to the plateau and change from the minimum to the plateau for the in-phase components of the impedance. Using these features, a cubic polynomial kernel SVM was able to classify the two populations, although the two features are highly correlated, as shown in Fig.2H."
https://www.pnas.org/content/pnas/early/2019/04/24/190127411...
"Moreover, to create a classifier for ME/CFS patients capable of identifying new patients, required for a robust diagnostic tool, we developed a trained kernel Support Vector Machine (SVM), a supervised machine-learning algorithm, using our experimental data. To classify new patients based on whether they fall to the right of the decision boundary, we initially selected the two features with the largest significance: change from the baseline to the plateau and change from the minimum to the plateau for the in-phase components of the impedance. Using these features, a cubic polynomial kernel SVM was able to classify the two populations, although the two features are highly correlated, as shown in Fig.2H."
https://www.pnas.org/content/pnas/early/2019/04/24/190127411...
Nothing wrong with an SVM. How else would they create a decision boundary for classifying patients? The choice of the polynomial kernel is interesting, but I don't think it causes any issues given the data.
I see, so basically instead of intuiting a simple threshold (e.g. >X% change), they apply an SVM which is able to discover more accurate thresholds (and error ranges). Do you have any suggested resources on learning more about SVM?
I guess my question comes from the observation that these advanced statistical techniques such as machine learning haven't been around for long and yet medicine has often created decision boundaries, presumably just looking at the data and making a reasonable cutoff. Is all the extra effort in a case like this worth the time investment?
I guess my question comes from the observation that these advanced statistical techniques such as machine learning haven't been around for long and yet medicine has often created decision boundaries, presumably just looking at the data and making a reasonable cutoff. Is all the extra effort in a case like this worth the time investment?
Learning about them: https://en.wikipedia.org/wiki/Support-vector_machine.
That will tell you SVMs are ancient (linear version dates back to 1963), and that what they do here isn’t really machine learning, but something similar to linear regression: just as linear regression finds the best (in some strict mathematical sense) line describing a set of points, this finds the best (in a similar mathematical sense) line splitting two sets of points.
For software, take a look at https://www.csie.ntu.edu.tw/~cjlin/libsvm/. Easy to use, fairly flexible, with a Java applet you can play with.
That will tell you SVMs are ancient (linear version dates back to 1963), and that what they do here isn’t really machine learning, but something similar to linear regression: just as linear regression finds the best (in some strict mathematical sense) line describing a set of points, this finds the best (in a similar mathematical sense) line splitting two sets of points.
For software, take a look at https://www.csie.ntu.edu.tw/~cjlin/libsvm/. Easy to use, fairly flexible, with a Java applet you can play with.
SVMs are as old school ML as they get. They guarentee the maximum separation at the decision boundary. However it doesn’t scale very well for higher dimensional data. The standard used to be to use some dimensionality reduction technique like PCA to preprocess before feeding it into the SVM.
This is all before deep learning.
This is all before deep learning.
Exactly. Perhaps the paper could have given a clearer message if the abstract had characterized SVMs as a quadratic optimization technique instead of as machine learning?
SVMs have smooth decision boundaries unlike neural networks.
Can anyone explain the idea of salt as a cell stressor?
> The idea is to stress the samples from both healthy and ill patients using salt, and then compare how each sample affects the flow of the electrical current.
Is this an osmotic pressure change that stresses the cytoskeleton or something? Does a cell under a hypertonic solution change its cell membrane channel’s behavior?
> The idea is to stress the samples from both healthy and ill patients using salt, and then compare how each sample affects the flow of the electrical current.
Is this an osmotic pressure change that stresses the cytoskeleton or something? Does a cell under a hypertonic solution change its cell membrane channel’s behavior?
They were bumping the Na to 200mOsm/L, which is insanely high compared to our plasma.
Hypertonicity like this causes the cell to shrink, which spoils the delicate relationships and ionic bonds between molecules in the cell. This causes a litany of issues, but one thing is an increase in production of reactive oxygen species, a byproduct of normal metabolism. ROS, otherwise known as free radicals, is what they use to measure cell stress.
Hypertonicity like this causes the cell to shrink, which spoils the delicate relationships and ionic bonds between molecules in the cell. This causes a litany of issues, but one thing is an increase in production of reactive oxygen species, a byproduct of normal metabolism. ROS, otherwise known as free radicals, is what they use to measure cell stress.
While a cell is alive, it maintains differential concentration of ions across its membrane, so by definition changing the [Na+] is changing the membrane potential.
The stress on the cell is basically it needs to work extra hard moving ions around to maintain itself. This is typically pumping ions against a concentration gradient which takes energy.
The stress on the cell is basically it needs to work extra hard moving ions around to maintain itself. This is typically pumping ions against a concentration gradient which takes energy.
[deleted]
I have some doubts that this will be 100% specific to CFS, but as professor Davis said at this point it's important to demonstrate that these patients have something wrong with them.
Davis called this the last major disease we know almost nothing about. It's 2-3 as common as multiple sclerosis with worse impact on the person's life. It's also the most underfunded illness when the number of patients and the severity is taken into account.
Davis called this the last major disease we know almost nothing about. It's 2-3 as common as multiple sclerosis with worse impact on the person's life. It's also the most underfunded illness when the number of patients and the severity is taken into account.
This biomarker seems incredibly general; I suspect people with certain presentations of a mitochondrial disease would have the same biomarker.
Agreed, but it's still great to have evidence of a physical condition, as many CFS patients have been made to feel like crackpots at some point, and indeed some doctors use it as a convenient label for people they believe to be mentally ill.
Of course, this also raises a question about how those with mental illness are often treated.
Of course, this also raises a question about how those with mental illness are often treated.
To be fair, if someone is overly anxious and neurotic about minor physical symptoms, to the point that the anxiety is making things worse, often the best thing a doctor can do is reassure them that they are fine, to stop worrying, and send them home. Taking those patients' physical symptoms too seriously may be the worst thing to do. I can see that it must be hard for doctors, especially if they only really have about 12 minutes to make a determination...
Hypochondriasis is real, sure.
But I'm not talking about cases like that, I'm talking about patients behaving perfectly rationally, but insistently.
But I'm not talking about cases like that, I'm talking about patients behaving perfectly rationally, but insistently.
Since poor sleep quality is a core symptom of CFS I can't help wonder if sleep is the underlying component. I think we've all underestimated the critical nature of sleep in immune, metabolic, stress, cognitive aspects, etc. It's also hard to self-assess the quality of your sleep, eg. clock-time at each phase, central apnea events, 02 saturation, noise/ light/ movement disturbances while you are asleep, etc.
A sleep study is critical to ruling out sleep issues before getting a proper diagnosis of ME/CFS. No good doctor would diagnose CFS without a sleep study.
That could rule out apneas but not the overall possibility, based on typical sleep studies anyways. e.g. you regularly go to bed thinking about the stuff you have to do tomorrow, so your brain doesn't enter deep sleep phases for long; your doctor thinks 6-7 hours of sleep is good, when you in particular need more like 8.5 ; your neighborhood is noisy, etc.
There is something akin to a daily exertion limit in CFS. When patients exceed it, they have a relapse. It is very easy to have these relapses because the exertion limit is so low.
There must be a biological mechanism behind this limitation. It could be something to do with energy generation in cells and this test may be measuring the associated impairment.
There must be a biological mechanism behind this limitation. It could be something to do with energy generation in cells and this test may be measuring the associated impairment.
There's a movie called "Unrest" which, in part, covers Dr Davis and his son I think. I thought it was a pretty interesting movie, it's on Netflix in the UK, not sure about elsewhere.
Ron Davis has worked on this day and night for years. I remember reading about his effort to figure out CFS to save his son. I'm not even sure this was his field of expertise. He just wanted to save his sons life and gave his every waking moment to try and figure it out. It makes me very happy that he seems to have accomplished it. I'm curious if his son is still with him, he was in really bad shape back in 2016.
My mom has this. While I'm hopeful this may lead to an effective treatment, it won't give her back the many years she's lived with the disease.
Off topic, but does anyone know why this post didn’t match up with my submission from last week [0]? I know scheme and querystring can throw it off. But in this case the links appear to be the same? Not sore about it, genuinely curious what the matching rules look like!
[0] https://news.ycombinator.com/item?id=19783668
[0] https://news.ycombinator.com/item?id=19783668
Sometimes the mods let dupes through, if they feel it's an important story that didn't get any/enough attention last time round.
That you can measure stress response in blood cells doesn’t rule out that the disease is psychological in origin (although I doubt CFS is).
Look over at r/medicine about this topic.
https://www.reddit.com/r/medicine/comments/blc7tv/stanford_l...
Doctors seem to be overly critical and ignorant. Any reason for this?
https://www.reddit.com/r/medicine/comments/blc7tv/stanford_l...
Doctors seem to be overly critical and ignorant. Any reason for this?
For the record, here’s a permalink that uses HTTPS: https://med.stanford.edu/news/all-news/2019/04/biomarker-for...
[deleted]
YouTube talk about the same:
https://www.youtube.com/watch?v=bXGCQPLUtdQ
40 people isn’t a super large sample size. Given there are huge numbers of people who claim to have cfs I would have expected much larger.
This is a poor statement since you leave out important qualifiers that would give it some beef. you can't just auto-post "sample size too low" whenever you don't see a thousand people, you have to go deeper to justify your opinion. This sample size can be way to low or it can be very high, completely depends on the population and what you want to show and with what confidence. Summary here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2876926/
But a study like this one here, i.e. if one were to be made, would have plenty of power with a sample size of 40: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC300808/ (also consider the opposite, how many participants it would take before you believe the result, but that kind of study would not be permitted; how many does it take to be saved before you believe it) This study - or the lack thereof, which the paper is about - nicely shows that when there is confidence about the underlying mechanism you feel much less (here: no) need for statistics and an RCT.
But a study like this one here, i.e. if one were to be made, would have plenty of power with a sample size of 40: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC300808/ (also consider the opposite, how many participants it would take before you believe the result, but that kind of study would not be permitted; how many does it take to be saved before you believe it) This study - or the lack thereof, which the paper is about - nicely shows that when there is confidence about the underlying mechanism you feel much less (here: no) need for statistics and an RCT.
Ok, the sample size was 20 cfs, and 20 non cfs.
The problem I have is that the sample size means the there are reasonably good odds that their a significant genetic difference between the two groups.
I am making no claim as to whether it’s real - I’ve known people who say they have it, and to me seems plausible, but I’ve also known people who are just not 20 any more, and have children, who also claim to have it - it seems plausible in the latter case that people have been sold on a message of “eat healthy and you won’t feel age”.
The problem with weak sample sizes is that it has a significant negative impact whether CFS exists or not:
The initial small sample size might justify a larger sized sample looking at specifically that marker. Then you also have better science (you have a “this marker indicates cfs” hypothesis), and more statistical robustness.
The problem I have is that the sample size means the there are reasonably good odds that their a significant genetic difference between the two groups.
I am making no claim as to whether it’s real - I’ve known people who say they have it, and to me seems plausible, but I’ve also known people who are just not 20 any more, and have children, who also claim to have it - it seems plausible in the latter case that people have been sold on a message of “eat healthy and you won’t feel age”.
The problem with weak sample sizes is that it has a significant negative impact whether CFS exists or not:
* if it’s a real disease it could be an incorrect marker - for example let’s say the CFS positive group were all Bostonians living in California. It’s highly likely that a random sample of California natives will have at least some uniform marker. Now people who have the disease, but aren’t from Boston may not have the marker, so are told they’re not sick.
* the disease doesn’t exist, but you’ve got a marker now. People who happen to have the bogus marker are now diagnosed with something that they don’t have. Now they have a diagnosis that prevents an actual diagnosis of real issues.
The initial small sample size might justify a larger sized sample looking at specifically that marker. Then you also have better science (you have a “this marker indicates cfs” hypothesis), and more statistical robustness.
Does it say anywhere in the paper what the “promising drug” that decreases the effect might be?
Not in the paper, but Ron gave a talk where he mentioned an MS drug (I have forgotten which) and a new drug that targets mitochondria which is not yet licensed for anything.
Sorry I can't be more specific. I don't remember the details.
Sorry I can't be more specific. I don't remember the details.
No. They are intentionally keeping that information secret to prevent people from trying to self-treat with it before more studies have been done.
SS31, copaxone and suramin.
Suramin is used for African sleeping sickness. They found that African sleeping sickness closely resembled CFS in terms of gene expression.
Suramin is used for African sleeping sickness. They found that African sleeping sickness closely resembled CFS in terms of gene expression.
So what they measure and where is the paper? I read the linked pr but find nothing about them
I don't understand the details but here is the link to the paper
https://www.pnas.org/content/early/2019/04/24/1901274116
https://www.pnas.org/content/early/2019/04/24/1901274116
Thanks for the link. I read the paper and it seems that they just measure the impedance (or resistance) of the cell membrane with an artificial increase of NaCl in the extracellular environment (ie plasma in the text). The final NaCl concentration looks like to be doubled than the normal range.
This might be an intersting finding, but I can't figure out why the impdecance of membrane need to be measured with increased NaCl in the plama. And whether it is only related with Na+ or Cl- change.
This might be an intersting finding, but I can't figure out why the impdecance of membrane need to be measured with increased NaCl in the plama. And whether it is only related with Na+ or Cl- change.
The salty plasma removes water from inside the cells by osmosis. The authors say that this technique is a common model for studying cellular response to stress.
The thing is if they just want to create a hyperosmotic solution they can add something won't be transported across the membrane, the way they did will change a lot of things on the membrane and inside the cell rather than stress introduced by hyperosmotic stress
Wait... does it mean chronic fatigue syndrom is recognized now ?
Thanks for the downvote but where I live it's still not recognized and patients are either told it's a depression or some kind of fibroid-myalgia.
Medicine is a must for any empathetic society. However I wonder if the dawn of modern medicine was the end of natural human evolution.
Now that people with diseases such as CFS and diabetes can receive help, we are no longer breeding these diseases out of the gene pool. As a result, we are actually spreading them epigenetically over time.
We will be forced to turn to science, such as vaccines and pre- and post-birth biological modification, in order to continue the progression of our species in our battle against ailments and germs.
As a side note, what is the best way to get tested for CFS? Is it possible to devlop CFS after contracting certain immuno-suppressant diseases?
In my youth I was constantly sleeping in class, but I chalked it up to a combination of insomnia and 24/7 forced consumption of amphetamines to treat ADHD. I mean I would sleep literally anywhere if I had more than half an hour to kill with nothing to do, much to the embarrassment of my guardians. At the time I was not interested in getting tested for narcolepsy and adding yet another item to my list of mental illnesses.
Then right after high school, I contracted mononucleosis. I was completely bed-ridden for almost six months, and for about two years I basically had no energy at all. Always sleeping. Those two years went by in a flash. And now I still feel that to a degree, years later. I'm Bipolar II, and when I'm in my manic phase I have near unlimited energy, but when I'm at baseline or in my depressive phase I basically crawl into a permanent coma for two weeks punctuated by work.
A lot of people intentionally allow their children to contract mono in their youth, similarly to chicken pox, so that the virus comes at a more manageable period in their life. It can be devastating/disruptive to an adult life. I was homeless and unable to work for a long time. I wonder if any research has been done towards the link between early contraction of these diseases and CFS.
Now that people with diseases such as CFS and diabetes can receive help, we are no longer breeding these diseases out of the gene pool. As a result, we are actually spreading them epigenetically over time.
We will be forced to turn to science, such as vaccines and pre- and post-birth biological modification, in order to continue the progression of our species in our battle against ailments and germs.
As a side note, what is the best way to get tested for CFS? Is it possible to devlop CFS after contracting certain immuno-suppressant diseases?
In my youth I was constantly sleeping in class, but I chalked it up to a combination of insomnia and 24/7 forced consumption of amphetamines to treat ADHD. I mean I would sleep literally anywhere if I had more than half an hour to kill with nothing to do, much to the embarrassment of my guardians. At the time I was not interested in getting tested for narcolepsy and adding yet another item to my list of mental illnesses.
Then right after high school, I contracted mononucleosis. I was completely bed-ridden for almost six months, and for about two years I basically had no energy at all. Always sleeping. Those two years went by in a flash. And now I still feel that to a degree, years later. I'm Bipolar II, and when I'm in my manic phase I have near unlimited energy, but when I'm at baseline or in my depressive phase I basically crawl into a permanent coma for two weeks punctuated by work.
A lot of people intentionally allow their children to contract mono in their youth, similarly to chicken pox, so that the virus comes at a more manageable period in their life. It can be devastating/disruptive to an adult life. I was homeless and unable to work for a long time. I wonder if any research has been done towards the link between early contraction of these diseases and CFS.
I was diagnosed with CFS after being prescribed an immunosuppressant. I reacted badly to it, developing chronic pain and fatigue, so it's possible that's a vector (I say possible as CFS is a diagnosis of exclusion, and it's highly likely thatany people diagnosed with CFS have some other, undiagnosed condition of which fatigue and pain are a symptom).
Makes sense. CFS, like schizophrenia, is essentially a symptom of some unknown collection of ailments.
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Yes, CFS does often comes as a result of a mononucleosis, about 22% of adult mono cases have CFS after 6 months, and <5% have CFS after 2 years. It's much better to contract mono as a child.
You don't get "tested" for CFS yet, it's currently a diagnosis given when all other explanations have been tried.
You don't get "tested" for CFS yet, it's currently a diagnosis given when all other explanations have been tried.
Pleasantly surprised to discover that it was legally available!
The test appears to be ridiculously good. Perfect separation of 40 subjects into those who have been diagnosed with CFS and those who are known to be healthy, from blood samples.
I want to see this replicated, by people who are not the original authors; but if this test is anything like as good as it looks, it's revolutionary.