5 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.)

ianai 5y ago
Few things are worse than a doctor denying care because of such denialism.
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
- texasbigdata 5y ago
  Further, here is landmark position paper from Mayo from mid 2021 [1] on ME/CF. It’s an absolutely brutal disease: absolutely no cure, no treatments, give or take 5% chance of ever beating it, and almost 50% of people are house or bed bound for the rest of their life and even more can’t work. Graduated exercise (run 1 mile today, 1+X tomorrow) and talk therapy (CBT, etc) have been contra indicated for a few years now and the former can actually make the condition worse. For something first diagnosed in 1958 (but observed since 1889/1880/1917, and also medieval times) to have absolutely no progress or even a unifying theory of how it works while it’s believed to impact up to a million Americans is absolutely baffling. ME/CF is a total beast and monster of a disease. That’s why the suicide rates are so high. [1] https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext https://www.mayoclinicproceedings.org/article/S0025-6196(21)...
  - DanBC 5y ago
    Only some forms of graduated exercise are contra-indicated. It's important to note that exercise is still a feature of effective treatment for ME/CFS.
    - texasbigdata 5y ago
      Thanks.
  - cpncrunch 5y ago
    >5% chance of ever beating it If you actually read the paper where that 5% figure comes from (Cairns,2005) you'll see that it is for untreated, naturalistic recovery. Looking at recovery after treatment (e.g. MRT) the figures are more like 30-35%. Heck, even the Rituximab trial resulted in 38% remission at 4 year follow-up just due to the placebo effect!
    - texasbigdata 5y ago
      If you read the more recent work, there's figures of 80/90/95%+ mentioned from the ME/CF national association as well as several of the hospital associated treatment centers. I mean I hope you're right, and it's 35%+, and anecdotally and on a branch here, some of the eerily similar but inconclusive SARS, avian flu, and Covid linked cases seem to be recovering faster from self reported individual data points. But I can't prove this. What's interesting, and seems to either support or intermingle with an earlier point you made is a recent paper that showed if you had childhood trauma you were (this might be the wrong word) either more susceptible or more likely to be in the MECF group. Which suggests, to your point, maybe the cohort has "weaker" psychological baselines. What's not clear, is once you get it, if that baseline is at all relevant to the actual disease (just like it doesn't matter if you initially got it from the Epstein Barr virus or another viral infection). But it sort of aligns with what you're saying. However the counterfactual is hard to work against. We know CBT/ACT/DBT/etc are highly effective for other issues.....all these people that are essentially disabled (can't work, require care, often can't even be materially ambulatory). Why wouldn't the self select into CBT/ETC? And if you're right, why wouldn't you see a tsunami of self reported or clinically measured recoveries? And therefore the consensus articles would say "do therapy". But they don't. Theres an old medical school anecdote: listen to the patient sometimes they're telling you the diagnosis. In economics you could draw the comparison to the concept of revealed preferences; we don't have to go through all this hand wringing of mechanisms and (im arguing slandering and blaming the victim) others. If you're right, shouldn't you see these landmarks papers saying "hey xyz protocol of ABC therapy plus DEF manual therapy produces an XX% recovery". Where is that paper? Because you'd think the MDs that work in this space would know about it and center their care around it. Id argue it doesn't exist, it's just internet warriors making stuff up.
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
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/...

ianai 5y ago

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

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
texasbigdata 5y ago
Further, here is landmark position paper from Mayo from mid 2021 [1] on ME/CF. It’s an absolutely brutal disease: absolutely no cure, no treatments, give or take 5% chance of ever beating it, and almost 50% of people are house or bed bound for the rest of their life and even more can’t work. Graduated exercise (run 1 mile today, 1+X tomorrow) and talk therapy (CBT, etc) have been contra indicated for a few years now and the former can actually make the condition worse. For something first diagnosed in 1958 (but observed since 1889/1880/1917, and also medieval times) to have absolutely no progress or even a unifying theory of how it works while it’s believed to impact up to a million Americans is absolutely baffling. ME/CF is a total beast and monster of a disease. That’s why the suicide rates are so high. [1] https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext https://www.mayoclinicproceedings.org/article/S0025-6196(21)...
- DanBC 5y ago
  Only some forms of graduated exercise are contra-indicated. It's important to note that exercise is still a feature of effective treatment for ME/CFS.
  - texasbigdata 5y ago
    Thanks.
- cpncrunch 5y ago
  >5% chance of ever beating it If you actually read the paper where that 5% figure comes from (Cairns,2005) you'll see that it is for untreated, naturalistic recovery. Looking at recovery after treatment (e.g. MRT) the figures are more like 30-35%. Heck, even the Rituximab trial resulted in 38% remission at 4 year follow-up just due to the placebo effect!
  - texasbigdata 5y ago
    If you read the more recent work, there's figures of 80/90/95%+ mentioned from the ME/CF national association as well as several of the hospital associated treatment centers. I mean I hope you're right, and it's 35%+, and anecdotally and on a branch here, some of the eerily similar but inconclusive SARS, avian flu, and Covid linked cases seem to be recovering faster from self reported individual data points. But I can't prove this. What's interesting, and seems to either support or intermingle with an earlier point you made is a recent paper that showed if you had childhood trauma you were (this might be the wrong word) either more susceptible or more likely to be in the MECF group. Which suggests, to your point, maybe the cohort has "weaker" psychological baselines. What's not clear, is once you get it, if that baseline is at all relevant to the actual disease (just like it doesn't matter if you initially got it from the Epstein Barr virus or another viral infection). But it sort of aligns with what you're saying. However the counterfactual is hard to work against. We know CBT/ACT/DBT/etc are highly effective for other issues.....all these people that are essentially disabled (can't work, require care, often can't even be materially ambulatory). Why wouldn't the self select into CBT/ETC? And if you're right, why wouldn't you see a tsunami of self reported or clinically measured recoveries? And therefore the consensus articles would say "do therapy". But they don't. Theres an old medical school anecdote: listen to the patient sometimes they're telling you the diagnosis. In economics you could draw the comparison to the concept of revealed preferences; we don't have to go through all this hand wringing of mechanisms and (im arguing slandering and blaming the victim) others. If you're right, shouldn't you see these landmarks papers saying "hey xyz protocol of ABC therapy plus DEF manual therapy produces an XX% recovery". Where is that paper? Because you'd think the MDs that work in this space would know about it and center their care around it. Id argue it doesn't exist, it's just internet warriors making stuff up.

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

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/...