6 ms·

You couldn't have picked a worse example than CFS to include in that list - a syndrome that for decades was dismissed as psychosomatic, and that many people (re

You couldn't have picked a worse example than CFS to include in that list - a syndrome that for decades was dismissed as psychosomatic, and that many people (read: most notably medical professionals) today still dismiss as such, despite the evidence that no, actually there's some kind of physical dysregulation going on (probably triggered in many cases by a viral infection.)

silisili 5y ago
Interestingly...well to me, at least, I went to the doctor for being constantly tired when I was younger. The doctor asked how many friends I had, I said oh a few, then diagnosed me with depression and recommended an antidepressant. I left and never went back. Two or so years later I got a long term girlfriend, who told me I quit breathing in my sleep and gasped for air. Obviously, this is something you don't even think of yourself. I didn't go on CPAP, but did see an ENT who did a couple sinus surgeries and put me on steroids for chronic sinus inflammation. That treatment changed my whole life. The fatigue disappeared immediately.
- Auracle 5y ago
  Similar experience for me except the root cause was low testosterone (probably ultimately caused by a traumatic brain injury). I kept telling them the only damned thing I was depressed about was how tired I was.
  - silisili 5y ago
    That was exactly my sentiment! Crazy how many doctors look for the easy way out. Glad you also found your cure.
- ethbr0 5y ago
  That was almost my exact experience with a former girlfriend, except my advising her about sleep apnea. I was amazed no one had mentioned it to her before, as she had quite lengthy pauses and then gasps after them, all night! Scared the hell out of me, until I finally said something, and she went for a sleep study.
  - silisili 5y ago
    It's so wild. The first time I woke up to her hitting and shaking me, she was visibly disturbed by it as I'm sure you were. And here we are our whole lives not even knowing we are doing it!
- mecha_ghidorah 5y ago
  Hey can you please PM me a bit more info on how you were treated and some facts about your case if you are comfortable to? I have been using CPAP for years but my case is weird: I was diagnosed in my early 20s, I was not and am not overweight, I only drink socially (so less than once per week), I don't and have never smoked, etc. CPAP has massively improved my life, I'm feeling much better, but honestly my sleep specialist was kind of shit when it came to answering questions. When I asked about surgeries and the like he just said "No, we can't do that" and I couldn't get him to elaborate on why. I never pushed it because I used to be too poor and I was too exhausted to bother with screwing with my treatment but I'm reconsidering that. Don't worry I won't take anything you say as medical advice or anything, I just... I dunno I guess I'm curious to hear about the experiences of someone who had a different treatment avenue in some depth. It might make me feel for comfortable/proactive about seeking a second opinion and pushing for specific answers
  - silisili 5y ago
    Hi, So to avoid confusion here, my surgery wasn't some alternative to CPAP per se, but fixed my breathing issue. In short, my nose got so restricted I could barely breathe from it at all. My journey began by seeing a doctor for it, who tapped on my forehead and said I don't have a sinus infection, take an allergy pill and go away. Nothing but pseudofed ever helped at all, and that got expensive and restricted. Then I saw an allergy doctor, who said that's a stupid test and did an MRI and found that I have something like a constant sinus infection, and inflammation everywhere. He sent me to an ENT, which honestly is probably where I should have started. As a side note, I did try allergy shots for about a year with no luck. The ENT has these cool but odd feeling cameras they shove deep into your nose to see around. It's a horrible feeling tbh, sometimes you feel it in your eye or even tooth(nerves, I guess). He determined I had polyps really bad and a deviated septum, so in one marathon surgery did both. Afterwards, it was great, and slowly got worse. ENT said polyps were coming back, so put me on a daily sinus rinse with budesonide(sp?). So each night I rinse my nose with that, and have for going on 8 years now I guess. It's kinda gross, you wouldn't believe all the snot that comes out after the steroids open everything up, which usually takes about 20 mins. Feel free to ask any questions.
cpncrunch 5y ago
I managed to recover from ME/CFS 20 years ago (with no symptoms since). It was entirely through psychological/behavioural changes that I was able to recover. >actually there's some kind of physical dysregulation going on The only replicated findings are with the HPA axis (the stress system). There are some studies pointing towards impaired mitochondrial respiration due to reduction in the link step between pyruvate and the TCA cycle. However, if you take a quick look on google scholar, you'll see that that link step is downregulated by the glucocorticoid receptor (the stress system again), so that would seem to be the likely cause. There are also some studies showing reduced work capacity after repeat CPET. But again, the HPA axis influences CPET performance, so that is a possibility there as well. The point is: just because there is "physical dysregulation" doesn't mean it can't be caused by stress or psychology. That is literally how the brain works (if it didn't, we wouldn't be alive and conscious). Psychology is intrinsically linked to the immune system, HPA axis, autonomic nervous system. Psychological stress has been repeatedly shown to cause neuroinflammation, cyyokine release, impairment of the parasympaethetic nervous system, to name a few.
- tomByrer 5y ago
  Good info! + Bruce Lipton's "Cell membranes are brains" theory. https://youtu.be/3tZ513NeSIc?list=PL2S-_LNXy9Vx24_o9zSTF6MADGr_4upKN&t=210 https://youtu.be/3tZ513NeSIc?list=PL2S-_LNXy9Vx24_o9zSTF6MAD... Also noteworthy: one of the top co-morbidities for COVID-19 is anxiety. https://youtu.be/iY98nuD3Bco?list=PL2S-_LNXy9Vx24_o9zSTF6MADGr_4upKN https://youtu.be/iY98nuD3Bco?list=PL2S-_LNXy9Vx24_o9zSTF6MAD...
  - Klinky 5y ago
    > We considered 2 exposures of interest: 1) specific underlying medical conditions and 2) the number of conditions. We captured data on both exposures by using ICD-10-CM diagnosis codes from inpatient or outpatient hospital records in PHD-SR from January 2019 up to and including a patient’s first inpatient encounter for COVID-19. We used 1 encounter with an ICD-10-CM code to establish the presence of an underlying condition because few patients had multiple encounters in this hospital database. We excluded 3 ICD-10-CM codes (ie, oxygen support, dependence on a ventilator, and tracheostomy) listed during the patient’s COVID-19 encounter because they could be part of COVID-19 treatment. ... > To further differentiate underlying conditions from acute complications of COVID-19, a panel of physicians (K.K.W., W.M.K., H.G.R., B.B., N.T.A., J.M.N.) classified the 314 CCSR categories into “likely underlying” (274 categories; eg, asthma); “indeterminate,” which could include underlying or acute complications or both (29 categories; eg, cardiac dysrhythmias); or “likely acute” (11 categories; eg, acute pulmonary embolism). Am I reading this correctly that they are determining "likely underlying fear and anxiety disorder" from a single ICD-10 code that was likely generated at the time of admission for severe COVID-19? If that's correct, it seems rather flawed at determining if these people had an actual underlying anxiety condition or if the anxiety was due to severe COVID-19 symptoms(moderate to severe difficulty breathing, lack of sleep, lack of food/fluids and pain). https://www.cdc.gov/pcd/issues/2021/21_0123.htm https://www.cdc.gov/pcd/issues/2021/21_0123.htm
ianai 5y ago
Few things are worse than a doctor denying care because of such denialism.
patmcc 5y ago
I would say that "dismissing" something as psychosomatic is the type of "oh it's all in your head" bullshit that, yes, has happened far too much in the history of ailments like CFS (and still happens today, I'm sure). And I'm completely against that. But at the same time, I know people with CFS who refuse treatment like CBT, antidepressants, counselling, getting more regular exercise, on the grounds that it must be a viral/bacterial infection, or genetic, or autoimmune. Those things are all possible and should be researched - but so should the idea that it's partly or largely a mental illness. And there may well be physical dysregulation - that can be caused by the brain in many ways.
- texasbigdata 5y ago
  Regular exercise makes it worse because of PEM [1], and graduated exercise therapy is contra indicated [4] because their ATP energy system doesn’t fully work [2]. You could cripple them by forcing progressive exercise dogmatically. Talk therapy is no longer recommended [2] and many antidepressants are not effective [3]. If you read the book Why Zebras Get Ulcers by Sapolski there’s this story about the African farmer who has his cow die, and can no longer farm or support his family after. Sapolski says in America you’d give antidepressants, in Africa you’d just chip in and buy a new cow. No offense, and as respectfully as possible while getting the point across, but you’re being a dick to your friend. These people bounce between doctors for years [5] because there’s no FDA approved diagnostic test, with a hyper complex disease that’s literally debilitating to them do you really think you can drive by diagnose and they just missed completely obvious and first pass treatment options? Your comment is the “I could build it in a weekend” response to ShowHN. Edit: note, I believe in somatic experiencing of symptoms, as described in the link to this threads article. For example there’s quite a few stories in the biography of Chairman Mao [6]of high status officials suffering “neurotic crises” and requiring bed bound recuperation, arguably because of the repressive environment they lived in. But ME/CF is completely different. 1. https://www.cdc.gov/me-cfs/healthcare-providers/clinical-care-patients-mecfs/treating-most-disruptive-symptoms.html https://www.cdc.gov/me-cfs/healthcare-providers/clinical-car... 2. https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext https://www.mayoclinicproceedings.org/article/S0025-6196(21)... 3. See dots in bottom left quadrant for Paxil/Zoloft/etc etc. https://www.researchgate.net/figure/CureTogethers-page-on-chronic-fatigue-syndrome_fig4_260148792 https://www.researchgate.net/figure/CureTogethers-page-on-ch... 4. https://me-pedia.org/wiki/Graded_exercise_therapy https://me-pedia.org/wiki/Graded_exercise_therapy quote: “ Graded exercise therapy (GET) is a form of physical therapy for the treatment of chronic fatigue syndrome (CFS) where physical activity is gradually increased over time. It is a treatment that was offered to ME/CFS patients in the UK by the National Health Service (NHS) as specified in the NICE guidelines from 2007-2021, but the recommendation was removed by the 2021 NICE guidelines because of high rates of harm.” 5. https://www.omf.ngo/what-is-mecfs/ https://www.omf.ngo/what-is-mecfs/ quote “ People with ME/CFS often go years before diagnosis, and 90% of sufferers have never been properly diagnosed.” 6. https://www.amazon.de/Mao-Biographie-Alexander-V-Pantsov/dp/3100616103/ref=asc_df_3100616103/?tag=googshopde-21&linkCode=df0&hvadid=310584974056&hvpos=&hvnetw=g&hvrand=5205177580789122569&hvpone=&hvptwo=&hvqmt=&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=9062657&hvtargid=pla-562391598667&psc=1&th=1&psc=1&tag=&ref=&adgrpid=65851437750&hvpone=&hvptwo=&hvadid=310584974056&hvpos=&hvnetw=g&hvrand=5205177580789122569&hvqmt=&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=9062657&hvtargid=pla-562391598667 https://www.amazon.de/Mao-Biographie-Alexander-V-Pantsov/dp/...

silisili 5y ago

Interestingly...well to me, at least, I went to the doctor for being constantly tired when I was younger. The doctor asked how many friends I had, I said oh a few, then diagnosed me with depression and recommended an antidepressant. I left and never went back. Two or so years later I got a long term girlfriend, who told me I quit breathing in my sleep and gasped for air. Obviously, this is something you don't even think of yourself. I didn't go on CPAP, but did see an ENT who did a couple sinus surgeries and put me on steroids for chronic sinus inflammation. That treatment changed my whole life. The fatigue disappeared immediately.

Auracle 5y ago
Similar experience for me except the root cause was low testosterone (probably ultimately caused by a traumatic brain injury). I kept telling them the only damned thing I was depressed about was how tired I was.
- silisili 5y ago
  That was exactly my sentiment! Crazy how many doctors look for the easy way out. Glad you also found your cure.
ethbr0 5y ago
That was almost my exact experience with a former girlfriend, except my advising her about sleep apnea. I was amazed no one had mentioned it to her before, as she had quite lengthy pauses and then gasps after them, all night! Scared the hell out of me, until I finally said something, and she went for a sleep study.
- silisili 5y ago
  It's so wild. The first time I woke up to her hitting and shaking me, she was visibly disturbed by it as I'm sure you were. And here we are our whole lives not even knowing we are doing it!
mecha_ghidorah 5y ago
Hey can you please PM me a bit more info on how you were treated and some facts about your case if you are comfortable to? I have been using CPAP for years but my case is weird: I was diagnosed in my early 20s, I was not and am not overweight, I only drink socially (so less than once per week), I don't and have never smoked, etc. CPAP has massively improved my life, I'm feeling much better, but honestly my sleep specialist was kind of shit when it came to answering questions. When I asked about surgeries and the like he just said "No, we can't do that" and I couldn't get him to elaborate on why. I never pushed it because I used to be too poor and I was too exhausted to bother with screwing with my treatment but I'm reconsidering that. Don't worry I won't take anything you say as medical advice or anything, I just... I dunno I guess I'm curious to hear about the experiences of someone who had a different treatment avenue in some depth. It might make me feel for comfortable/proactive about seeking a second opinion and pushing for specific answers
- silisili 5y ago
  Hi, So to avoid confusion here, my surgery wasn't some alternative to CPAP per se, but fixed my breathing issue. In short, my nose got so restricted I could barely breathe from it at all. My journey began by seeing a doctor for it, who tapped on my forehead and said I don't have a sinus infection, take an allergy pill and go away. Nothing but pseudofed ever helped at all, and that got expensive and restricted. Then I saw an allergy doctor, who said that's a stupid test and did an MRI and found that I have something like a constant sinus infection, and inflammation everywhere. He sent me to an ENT, which honestly is probably where I should have started. As a side note, I did try allergy shots for about a year with no luck. The ENT has these cool but odd feeling cameras they shove deep into your nose to see around. It's a horrible feeling tbh, sometimes you feel it in your eye or even tooth(nerves, I guess). He determined I had polyps really bad and a deviated septum, so in one marathon surgery did both. Afterwards, it was great, and slowly got worse. ENT said polyps were coming back, so put me on a daily sinus rinse with budesonide(sp?). So each night I rinse my nose with that, and have for going on 8 years now I guess. It's kinda gross, you wouldn't believe all the snot that comes out after the steroids open everything up, which usually takes about 20 mins. Feel free to ask any questions.

cpncrunch 5y ago

I managed to recover from ME/CFS 20 years ago (with no symptoms since). It was entirely through psychological/behavioural changes that I was able to recover. >actually there's some kind of physical dysregulation going on The only replicated findings are with the HPA axis (the stress system). There are some studies pointing towards impaired mitochondrial respiration due to reduction in the link step between pyruvate and the TCA cycle. However, if you take a quick look on google scholar, you'll see that that link step is downregulated by the glucocorticoid receptor (the stress system again), so that would seem to be the likely cause. There are also some studies showing reduced work capacity after repeat CPET. But again, the HPA axis influences CPET performance, so that is a possibility there as well. The point is: just because there is "physical dysregulation" doesn't mean it can't be caused by stress or psychology. That is literally how the brain works (if it didn't, we wouldn't be alive and conscious). Psychology is intrinsically linked to the immune system, HPA axis, autonomic nervous system. Psychological stress has been repeatedly shown to cause neuroinflammation, cyyokine release, impairment of the parasympaethetic nervous system, to name a few.

tomByrer 5y ago
Good info! + Bruce Lipton's "Cell membranes are brains" theory. https://youtu.be/3tZ513NeSIc?list=PL2S-_LNXy9Vx24_o9zSTF6MADGr_4upKN&t=210 https://youtu.be/3tZ513NeSIc?list=PL2S-_LNXy9Vx24_o9zSTF6MAD... Also noteworthy: one of the top co-morbidities for COVID-19 is anxiety. https://youtu.be/iY98nuD3Bco?list=PL2S-_LNXy9Vx24_o9zSTF6MADGr_4upKN https://youtu.be/iY98nuD3Bco?list=PL2S-_LNXy9Vx24_o9zSTF6MAD...
- Klinky 5y ago
  > We considered 2 exposures of interest: 1) specific underlying medical conditions and 2) the number of conditions. We captured data on both exposures by using ICD-10-CM diagnosis codes from inpatient or outpatient hospital records in PHD-SR from January 2019 up to and including a patient’s first inpatient encounter for COVID-19. We used 1 encounter with an ICD-10-CM code to establish the presence of an underlying condition because few patients had multiple encounters in this hospital database. We excluded 3 ICD-10-CM codes (ie, oxygen support, dependence on a ventilator, and tracheostomy) listed during the patient’s COVID-19 encounter because they could be part of COVID-19 treatment. ... > To further differentiate underlying conditions from acute complications of COVID-19, a panel of physicians (K.K.W., W.M.K., H.G.R., B.B., N.T.A., J.M.N.) classified the 314 CCSR categories into “likely underlying” (274 categories; eg, asthma); “indeterminate,” which could include underlying or acute complications or both (29 categories; eg, cardiac dysrhythmias); or “likely acute” (11 categories; eg, acute pulmonary embolism). Am I reading this correctly that they are determining "likely underlying fear and anxiety disorder" from a single ICD-10 code that was likely generated at the time of admission for severe COVID-19? If that's correct, it seems rather flawed at determining if these people had an actual underlying anxiety condition or if the anxiety was due to severe COVID-19 symptoms(moderate to severe difficulty breathing, lack of sleep, lack of food/fluids and pain). https://www.cdc.gov/pcd/issues/2021/21_0123.htm https://www.cdc.gov/pcd/issues/2021/21_0123.htm

ianai 5y ago

Few things are worse than a doctor denying care because of such denialism.

patmcc 5y ago

I would say that "dismissing" something as psychosomatic is the type of "oh it's all in your head" bullshit that, yes, has happened far too much in the history of ailments like CFS (and still happens today, I'm sure). And I'm completely against that. But at the same time, I know people with CFS who refuse treatment like CBT, antidepressants, counselling, getting more regular exercise, on the grounds that it must be a viral/bacterial infection, or genetic, or autoimmune. Those things are all possible and should be researched - but so should the idea that it's partly or largely a mental illness. And there may well be physical dysregulation - that can be caused by the brain in many ways.

texasbigdata 5y ago
Regular exercise makes it worse because of PEM [1], and graduated exercise therapy is contra indicated [4] because their ATP energy system doesn’t fully work [2]. You could cripple them by forcing progressive exercise dogmatically. Talk therapy is no longer recommended [2] and many antidepressants are not effective [3]. If you read the book Why Zebras Get Ulcers by Sapolski there’s this story about the African farmer who has his cow die, and can no longer farm or support his family after. Sapolski says in America you’d give antidepressants, in Africa you’d just chip in and buy a new cow. No offense, and as respectfully as possible while getting the point across, but you’re being a dick to your friend. These people bounce between doctors for years [5] because there’s no FDA approved diagnostic test, with a hyper complex disease that’s literally debilitating to them do you really think you can drive by diagnose and they just missed completely obvious and first pass treatment options? Your comment is the “I could build it in a weekend” response to ShowHN. Edit: note, I believe in somatic experiencing of symptoms, as described in the link to this threads article. For example there’s quite a few stories in the biography of Chairman Mao [6]of high status officials suffering “neurotic crises” and requiring bed bound recuperation, arguably because of the repressive environment they lived in. But ME/CF is completely different. 1. https://www.cdc.gov/me-cfs/healthcare-providers/clinical-care-patients-mecfs/treating-most-disruptive-symptoms.html https://www.cdc.gov/me-cfs/healthcare-providers/clinical-car... 2. https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext https://www.mayoclinicproceedings.org/article/S0025-6196(21)... 3. See dots in bottom left quadrant for Paxil/Zoloft/etc etc. https://www.researchgate.net/figure/CureTogethers-page-on-chronic-fatigue-syndrome_fig4_260148792 https://www.researchgate.net/figure/CureTogethers-page-on-ch... 4. https://me-pedia.org/wiki/Graded_exercise_therapy https://me-pedia.org/wiki/Graded_exercise_therapy quote: “ Graded exercise therapy (GET) is a form of physical therapy for the treatment of chronic fatigue syndrome (CFS) where physical activity is gradually increased over time. It is a treatment that was offered to ME/CFS patients in the UK by the National Health Service (NHS) as specified in the NICE guidelines from 2007-2021, but the recommendation was removed by the 2021 NICE guidelines because of high rates of harm.” 5. https://www.omf.ngo/what-is-mecfs/ https://www.omf.ngo/what-is-mecfs/ quote “ People with ME/CFS often go years before diagnosis, and 90% of sufferers have never been properly diagnosed.” 6. https://www.amazon.de/Mao-Biographie-Alexander-V-Pantsov/dp/3100616103/ref=asc_df_3100616103/?tag=googshopde-21&linkCode=df0&hvadid=310584974056&hvpos=&hvnetw=g&hvrand=5205177580789122569&hvpone=&hvptwo=&hvqmt=&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=9062657&hvtargid=pla-562391598667&psc=1&th=1&psc=1&tag=&ref=&adgrpid=65851437750&hvpone=&hvptwo=&hvadid=310584974056&hvpos=&hvnetw=g&hvrand=5205177580789122569&hvqmt=&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=9062657&hvtargid=pla-562391598667 https://www.amazon.de/Mao-Biographie-Alexander-V-Pantsov/dp/...