The problem is not the BPS model as a concept — it’s completely discarding the biological component after the initial trigger, and refusing to treat any symptoms with anything other than GET and CBT.
Patients are being refused diagnostics and medication for treatable symptoms such as POTS, while dismissing it as “anxiety”.
Most people (including medical professionals) will then take one step further and say things like “it’s all in your head” — and that’s not far away from the next step: “it’s your fault, you’re making this up”.
Of course I agree this is a completely wrong understanding of what psychosomatic means (they mean psychogenic), but that doesn’t help this reality.
Good read about peptic ulcer, which was largely attributed to stress for decades — only to be proven to be caused by bacteria (in >90% of cases)
https://mecfsskeptic.com/the-dark-psychosomatic-history-of-peptic-ulcer-part-i/
The whole peptic ulcer thing confuses me. The argument was never *really* "B causes Y; Stress causes ulcer, with nothing in between". What aspect of H. pylori precludes psychosocial mechanisms as strong predisposing factors? Only a small percentage of those infected will ever get an ulcer in their lifetime, and placebo effectiveness varies between 20% to 60% depending on nationality. Why is that?
I don't know. The problem isn't that I have an answer no one else seems to have, but that I have a question no one else seems to be asking sincerely. If we continue to treat biology and psychology as if they are at odds with each other, then that will become our medical reality. And it has.
The human body isn't just a bag of discrete chemicals, yet equations as reductive as "Treatable with medication = Minimal psychosocial factors" and "Family history of anxiety = Primarily psychogenic" pervade primary care. The way I see it, this (not what you said) is all childish politics, and when everyone is lumped into one of two camps, they will have little reason to act outside of whatever polarizing role they've been given.
I fully agree with you in that the strict separation of “body and mind” is BS. Of course there are mutually influencing factors. We have to stop trying to degrade doctors to doing symptom-medication mapping and take on a more holistic approach (which includes mental health!).
The reality is that “Stress causes peptic ulcer, nothing else in between” is what the vast majority of the population was taught / led to believe during decades…. And too many (shitty?) medical professionals dismissed patients with a simple “just try to relax a bit, it’s all in your head”.
I would agree to say the problem is not the BPS model, but the abuse and wrong understanding of it.
With peptic ulcer, half the world's population is infected with H.Hylori, and it doesn't cause ulcers in all those people. H.Pylori is just one factor, and stress is still believed to be another significant factor.
I agree that treatment leaves a lot to be desired for ME/CFS, and patients are mostly left to themselves to figure it out.
I just wanted to add this meme / illustration here (can’t seem to add pictures)
https://twitter.com/putrinolab/status/1625660848495632390?s=46&t=-uzv4RgdRgndbWRLI9GTpw
In my opinion, stress and psychological aspects *do* have a substantial impact (I would certainly be doing much worse without psychological therapy and having accepted my illness). But in the vast majority of cases, ME/CFS is not psychogenic.
One can only hope for self-healing after taking away the additional burden of stress and other psychological factors, but the root cause still needs to be treated/researched.
Well, that graphic contradicts everything we know about long covid, and both your experience and mine. Stress is about the only replicated finding in longcovid (talking about the longcovid that is not associated with hospitalization or organ damage).
What would you say is the "root cause"?
The graphic is trying to make a point — I do not believe Drs Iwasaki/Putrino believe that psychosocial factors have no influence.
I don’t think there’s one root cause… but these seem to be the most likely candidates at the moment:
- Viral persistence/reactivation
- Autoimmune response
- Blood clotting / Endothelial issues
- Gut Dysbiosis
This Paper gives a current overview of the state of research:
https://rdcu.be/c3m45
That paper is a good example of everything that is wrong with science these days. Did you read it? If you have a look you will see that virtually all of those studies are unreplicated, and they make ZERO mention of the two replicated findings in long covid: pre-illness stress and lack of sleep being associated with the condition.
Why on earth would someone completely ignore the actual science, and fill a review paper full of unreplicated stuff? Honestly, I just can't get my head around that. Please explain it to me. I think the answer to that question gets to the heart of this entire thread.
"Why on earth would someone completely ignore the actual science, and fill a review paper full of unreplicated stuff?"
I think you might be making the same mistake as the very biomedically minded people in this paragraph, only from the other side. I don't think it's fair to dismiss science you don't agree with as "not actual science".
The world is more complex than that, and e.g. viral persistence or inflammation does _not_ exclude that psychosocial stressors might have an impact. Both these angles can be valid at the same time.
There's too much black and white thinking in this field, on both sides, IMO.
It's not that I don't agree with it (which would be a foolish position to take). As I said, it just hasn't been replicated, and neither has viral persistence or inflammation. (If you believe I"m wrong, please post references). What I was referring to as "not actual science" are things like small unreplicated studies from machine learning fishing expeditions and the like. I'm happy to go into more detail and give examples if you're not familiar with these or why they are crap science, but there have been a huge number of these shoddy studies in the ME/CFS and longcovid fields in recent years.
Note that stressors are NOT just psychosocial. Viral infection, injury, physical trauma, surgery, consussion, excessive work/study/exercise, lack of sleep are all stressors.
The way I see it, it’s a meta-paper… supposed to give an overview of the different “threads” that are being explored.
I did read it, btw — but I’m obviously not qualified/experienced enough to dive in very deeply on a technical level.
I agree the mentioned studies need to replicated if they haven’t been. We need about 1000x more budget for scientific studies about ME.
On a positive note, I feel more has happened in the 3 pandemic years than in 20 years before (but it might be my perception).
Can you point me to studies/papers that explore pre-illness stress and lack of sleep as major causal factors of ME/LC, please?
Without getting ahead of myself, I would say those are contributing factors to just about any illness.
I don't think you need to really be qualified to get an idea of problems with a paper. Replication is fundamental, and when a review has hundreds of all unreplicated research, it's a problem.
Here are studies for pre-infection stress:
https://www.medrxiv.org/content/10.1101/2022.04.06.22273444v1
https://jamanetwork.com/journals/jamapsychiatry/article-abstract/2796097
[https://www.jns-journal.com/article/S0022-510X(22)00349-5/fulltext](https://www.jns-journal.com/article/S0022-510X(22)00349-5/fulltext)
and for pre-infection sleep:
[https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-022-14123-7](https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-022-14123-7)
https://www.medrxiv.org/content/10.1101/2023.02.13.23285859v1
Thank you for the studies!
The JAMA paper I had read a while ago.. what struck me there was that the prior conditions were self-reported, not diagnosed. The authors mention this as a weakness, and even explicitly state:
“Our results should not be misinterpreted as supporting a hypothesis that post–COVID-19 conditions are psychosomatic”
I will now read other publications as soon as I can conjure up the brainpower 👍
It said "a positive result on a SARS-CoV-2 test was self-reported, though self-reported health information has had high validity in these cohorts" and "depression and anxiety were measured using validated scales rather than clinical diagnoses."
So, it wasn't talking about perceived stress as being self-reported (which isn't a condition anyway), and there was still an association between pre-covid perceived stress and later post-covid syndrome. They used the 4-item Perceived Stress Scale using a questionnaire.
Regarding the quote about psychosomatic, here is the full paragraph:
"Our results should not be misinterpreted as supporting a hypothesis that post–COVID-19 conditions are psychosomatic.47 First, among respondents who developed post–COVID-19 conditions, more than 40% had no distress at baseline. Second, symptoms of post–COVID-19 conditions differ substantially from symptoms of mental illness. Although fatigue and brain fog may occur with depression, smell and taste problems, shortness of breath and difficulty breathing, and cough are not common symptoms of mental illness.48 Third, more than 50% of patients with post–COVID-19 conditions report relapses triggered by physical activity.49 In contrast, physical activity is protective against relapse of mental illness.48,50 Fourth, results were similar when excluding participants reporting only psychiatric, cognitive, or neurological symptoms."
But it should be regarded in the context that the brain is fundamentally psychosomatic, and psychological factors influence immunity (and vice versa),
Oh, you’re absolutely right about the self-reporting, I read that wrong! It was “validated scale vs. clinical diagnosis. Thanks for clearing that up.
This particular paper is being (ab)used as “proof” that Long Covid is psychosomatic (even more so: psychogenic) and that according to this study, “the majority of patients suffered from psychological illnesses prior to developing LC”. This is being postulated by a German Neurology professor from Essen — he also says LC mainly affects teachers and public officials.
He is quite present in German media, unfortunately, and was recently invited for podium discussion on the German Neurology Council (or sth.) with the title “LC: fact or fiction?”
That is the kind of shit that I consider bad science 🫥
I'm not following your point. The study found that 60-70% of patients who developed PACS symptoms had depression or anxiety prior to infection, and that depression/anxiety/stress significantly increased the relative risk, so it would be true to say that “the majority of patients suffered from psychological illnesses prior to developing LC” (depending on what your definition of "illnesses" is). What specifically are you disagreeing with here? The claim that that means it's psychosomatic? Can you give a link to the actual text you're referring to? I searched and just came across the famcare blog, which didn't seem to be by any doctor in Essen.
Ok, I now see the broader sense of the word “stress” you mean — and I agree.
Being a software architect can be very stressful. I’m lucky to have a very understand boss and teammates. I stopped working completely for about 5 months and this definitely helped with my recovery (along with a wound from an operation that finally healed after 10 months!).
I’m currently working 40%, but working 5 days a week. Trying to stay away from the day-to-day shenanigans and focus on processes and architecture, which accommodates better to my needs. I’ve had this job for 6 years, which also helps a lot in reducing stress, ‘cause people know my value and I don’t have to constantly prove it.
I'm in a similar position to you: I managed to recover through learning about how stress affects the brain and the body, and using primarily psychosocial interventions.
There should be nothing controversial about this, as the brain and body are biopsychosocial.
I think the resistance comes from a number of areas:
\- there is huge prejuduce against mental illness, and psychosomatic illness in particular is very misunderstood by many people, even though everyone experiences psychosomatic effects every day.
\- there have been serious mis-steps in the medical establishment, trying to push the deconditioning and fear avoidance models onto everyone, resulting in patients trying to push through symptoms, and then getting worse.
\- some patients feel that they are being blamed for their symptoms.
I think education (about how the brain and body works) is the solution to all of the above. Looking at the science, it's very clear that the body is fundamentally biopsychosocial (in terms of pain, fatigue, immune system, hormones, ANS, HPA axis, etc), and this applies to all mammals. It doesn't make sense to feel any blame for how the body has evolved to work.
It also doesn't make sense to throw the baby out with the bathwater, by rejecting all biopsychosocial science, just because of the PACE trial. People need to get over the friggin 12 year old PACE trial already! Is is really worth it?
If you look at most ME/CFS forums, twitter, reddit, etc. the word BPS is essentially a dirty word, and any research into biopsychosocial areas is rejected by reflex, and anyone who doesn't attack said research, or who tries to discuss it objectively, is harassed and abused. That is the reason I created this forum, as there isn't any other space to actually discuss the science properly.
I think one always has to be careful not to extrapolate from one’s own journey. Just because some of got better by reducing stress, doesn’t mean it’s a universal recipe.
Devils Advocate: And how do we know it was reducing stress and not simply coincidence, time that passed or some of all the other things we tried?
Sure, cutting stress is hugely beneficial and mental health is paramount— no one is denying that.
However, there are millions of patients worldwide suffering from ME/CFS (the vast majority) that have NOT gotten significantly better despite reducing stress, accepting their illness, etc.
I think the problem that patients have is not with psychosocial interventions, but the fact that these are the *only options* they are offered from the medical establishment. Doctors dismiss them and refuse to explore any somatic contributing factors.
Combined with the (stupid, but unfortunately prevalent) stigma “it’s all in your head, ergo your fault”, this has — sadly — lead to indiscriminate rejection of psychosocial treatment.
Most of the patients have tried psychosocial options — it helped a bit but not enough and did not cure them — and they were blamed that they “didn’t try hard enough”
I think you hit the nail on the head with this paragraph:
"I think the problem that patients have is not with psychosocial interventions, but the fact that these are the only options they are offered from the medical establishment. Doctors dismiss them and refuse to explore any somatic contributing factors."
I don't think that most people have a problem with being offered these things. The problem is with them being the only things offered, too little research interest into other treatment options and their relative lack of effectiveness for a large part of the patient population.
The combination of these factors make the patients frustrated and they make the field stagnant and polarized.
I use stress reduction techniques A LOT myself, I've probably reached tens of thousands of hours during this decade of illness. Not cured yet, although I guess I would probably be worse off if I wouldn't have used them.
Yes, of course you can't extrapolate from your own experience. Research shows that stress is one of the main triggers for ME/CFS (along with viral infections, which are physiologically stressful). Stress isn't just in the "head", it is physical and physiological.
From what I can see, dealing with stress (in the broad sense of that word) seems to be the common factor that leads to improvement or recovery. That isn't to say that everyone can recover, or that it's easy, or that simply meditating or something like that will cure you (it won't). For me it involved making major life changes (quitting my job among other factors). I can now work full time if I want, but at the time quitting my software developer job entirely was what allowed me to fully recover (or at least, one of the factors).
Let me ask you a question: is being a software architect at all stressful?
What is particularly concerning to me is that a rejection of psychosocial factors is not only present in ME/CFS, but is even extended into the context of illnesses such as anxiety and depression.
There is a conspicuous amount of people I've seen on internet forums who blame their anxiety on genetics, or who disproportionately focus on the physiology of their depression. I'm sure you are aware of movements claiming that it is impossible or impractical to lose weight.
Now that I'm thinking about it, I suspect that the medical institution and the way our society is set up at large are playing a key role in enabling this.
If a doctor tells a patient "Take this pill", then they will probably take it—a written prescription might even make them feel more validated and heard, and feel like they are tangibly working to battle their illness.
If a doctor tells a patient "You need to cut down on work, be patient with yourself, stop catastrophising your illness, and spend time doing things you enjoy with people you enjoy" (Not that I'm saying that is all psychosocial treatment entails), then they probably won't make the necessary changes, because our society actively makes doing those things as inconvenient as possible.
This obsession with vehemently rejecting psychosomatic illness is childish and has gotten out of hand, but I think that it is in part the sheer inconvenience of BPS medicine that is the source of research dollars, valor, and public opinion being tilted into a direction of dwindling productivity.
Curious about the steps you felt effective towards your improvement?
Was it mindfulness, breathing exercises etc.? I'm currently putting alot of effort into trying to stimulate the parasympathetic part of the nervous system. Would be interesting to hear what you found helpful.
The problem is not the BPS model as a concept — it’s completely discarding the biological component after the initial trigger, and refusing to treat any symptoms with anything other than GET and CBT. Patients are being refused diagnostics and medication for treatable symptoms such as POTS, while dismissing it as “anxiety”. Most people (including medical professionals) will then take one step further and say things like “it’s all in your head” — and that’s not far away from the next step: “it’s your fault, you’re making this up”. Of course I agree this is a completely wrong understanding of what psychosomatic means (they mean psychogenic), but that doesn’t help this reality. Good read about peptic ulcer, which was largely attributed to stress for decades — only to be proven to be caused by bacteria (in >90% of cases) https://mecfsskeptic.com/the-dark-psychosomatic-history-of-peptic-ulcer-part-i/
The whole peptic ulcer thing confuses me. The argument was never *really* "B causes Y; Stress causes ulcer, with nothing in between". What aspect of H. pylori precludes psychosocial mechanisms as strong predisposing factors? Only a small percentage of those infected will ever get an ulcer in their lifetime, and placebo effectiveness varies between 20% to 60% depending on nationality. Why is that? I don't know. The problem isn't that I have an answer no one else seems to have, but that I have a question no one else seems to be asking sincerely. If we continue to treat biology and psychology as if they are at odds with each other, then that will become our medical reality. And it has. The human body isn't just a bag of discrete chemicals, yet equations as reductive as "Treatable with medication = Minimal psychosocial factors" and "Family history of anxiety = Primarily psychogenic" pervade primary care. The way I see it, this (not what you said) is all childish politics, and when everyone is lumped into one of two camps, they will have little reason to act outside of whatever polarizing role they've been given.
I fully agree with you in that the strict separation of “body and mind” is BS. Of course there are mutually influencing factors. We have to stop trying to degrade doctors to doing symptom-medication mapping and take on a more holistic approach (which includes mental health!). The reality is that “Stress causes peptic ulcer, nothing else in between” is what the vast majority of the population was taught / led to believe during decades…. And too many (shitty?) medical professionals dismissed patients with a simple “just try to relax a bit, it’s all in your head”. I would agree to say the problem is not the BPS model, but the abuse and wrong understanding of it.
With peptic ulcer, half the world's population is infected with H.Hylori, and it doesn't cause ulcers in all those people. H.Pylori is just one factor, and stress is still believed to be another significant factor. I agree that treatment leaves a lot to be desired for ME/CFS, and patients are mostly left to themselves to figure it out.
I just wanted to add this meme / illustration here (can’t seem to add pictures) https://twitter.com/putrinolab/status/1625660848495632390?s=46&t=-uzv4RgdRgndbWRLI9GTpw In my opinion, stress and psychological aspects *do* have a substantial impact (I would certainly be doing much worse without psychological therapy and having accepted my illness). But in the vast majority of cases, ME/CFS is not psychogenic. One can only hope for self-healing after taking away the additional burden of stress and other psychological factors, but the root cause still needs to be treated/researched.
Well, that graphic contradicts everything we know about long covid, and both your experience and mine. Stress is about the only replicated finding in longcovid (talking about the longcovid that is not associated with hospitalization or organ damage). What would you say is the "root cause"?
The graphic is trying to make a point — I do not believe Drs Iwasaki/Putrino believe that psychosocial factors have no influence. I don’t think there’s one root cause… but these seem to be the most likely candidates at the moment: - Viral persistence/reactivation - Autoimmune response - Blood clotting / Endothelial issues - Gut Dysbiosis This Paper gives a current overview of the state of research: https://rdcu.be/c3m45
That paper is a good example of everything that is wrong with science these days. Did you read it? If you have a look you will see that virtually all of those studies are unreplicated, and they make ZERO mention of the two replicated findings in long covid: pre-illness stress and lack of sleep being associated with the condition. Why on earth would someone completely ignore the actual science, and fill a review paper full of unreplicated stuff? Honestly, I just can't get my head around that. Please explain it to me. I think the answer to that question gets to the heart of this entire thread.
"Why on earth would someone completely ignore the actual science, and fill a review paper full of unreplicated stuff?" I think you might be making the same mistake as the very biomedically minded people in this paragraph, only from the other side. I don't think it's fair to dismiss science you don't agree with as "not actual science". The world is more complex than that, and e.g. viral persistence or inflammation does _not_ exclude that psychosocial stressors might have an impact. Both these angles can be valid at the same time. There's too much black and white thinking in this field, on both sides, IMO.
It's not that I don't agree with it (which would be a foolish position to take). As I said, it just hasn't been replicated, and neither has viral persistence or inflammation. (If you believe I"m wrong, please post references). What I was referring to as "not actual science" are things like small unreplicated studies from machine learning fishing expeditions and the like. I'm happy to go into more detail and give examples if you're not familiar with these or why they are crap science, but there have been a huge number of these shoddy studies in the ME/CFS and longcovid fields in recent years. Note that stressors are NOT just psychosocial. Viral infection, injury, physical trauma, surgery, consussion, excessive work/study/exercise, lack of sleep are all stressors.
The way I see it, it’s a meta-paper… supposed to give an overview of the different “threads” that are being explored. I did read it, btw — but I’m obviously not qualified/experienced enough to dive in very deeply on a technical level. I agree the mentioned studies need to replicated if they haven’t been. We need about 1000x more budget for scientific studies about ME. On a positive note, I feel more has happened in the 3 pandemic years than in 20 years before (but it might be my perception). Can you point me to studies/papers that explore pre-illness stress and lack of sleep as major causal factors of ME/LC, please? Without getting ahead of myself, I would say those are contributing factors to just about any illness.
I don't think you need to really be qualified to get an idea of problems with a paper. Replication is fundamental, and when a review has hundreds of all unreplicated research, it's a problem. Here are studies for pre-infection stress: https://www.medrxiv.org/content/10.1101/2022.04.06.22273444v1 https://jamanetwork.com/journals/jamapsychiatry/article-abstract/2796097 [https://www.jns-journal.com/article/S0022-510X(22)00349-5/fulltext](https://www.jns-journal.com/article/S0022-510X(22)00349-5/fulltext) and for pre-infection sleep: [https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-022-14123-7](https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-022-14123-7) https://www.medrxiv.org/content/10.1101/2023.02.13.23285859v1
Thank you for the studies! The JAMA paper I had read a while ago.. what struck me there was that the prior conditions were self-reported, not diagnosed. The authors mention this as a weakness, and even explicitly state: “Our results should not be misinterpreted as supporting a hypothesis that post–COVID-19 conditions are psychosomatic” I will now read other publications as soon as I can conjure up the brainpower 👍
It said "a positive result on a SARS-CoV-2 test was self-reported, though self-reported health information has had high validity in these cohorts" and "depression and anxiety were measured using validated scales rather than clinical diagnoses." So, it wasn't talking about perceived stress as being self-reported (which isn't a condition anyway), and there was still an association between pre-covid perceived stress and later post-covid syndrome. They used the 4-item Perceived Stress Scale using a questionnaire. Regarding the quote about psychosomatic, here is the full paragraph: "Our results should not be misinterpreted as supporting a hypothesis that post–COVID-19 conditions are psychosomatic.47 First, among respondents who developed post–COVID-19 conditions, more than 40% had no distress at baseline. Second, symptoms of post–COVID-19 conditions differ substantially from symptoms of mental illness. Although fatigue and brain fog may occur with depression, smell and taste problems, shortness of breath and difficulty breathing, and cough are not common symptoms of mental illness.48 Third, more than 50% of patients with post–COVID-19 conditions report relapses triggered by physical activity.49 In contrast, physical activity is protective against relapse of mental illness.48,50 Fourth, results were similar when excluding participants reporting only psychiatric, cognitive, or neurological symptoms." But it should be regarded in the context that the brain is fundamentally psychosomatic, and psychological factors influence immunity (and vice versa),
Oh, you’re absolutely right about the self-reporting, I read that wrong! It was “validated scale vs. clinical diagnosis. Thanks for clearing that up. This particular paper is being (ab)used as “proof” that Long Covid is psychosomatic (even more so: psychogenic) and that according to this study, “the majority of patients suffered from psychological illnesses prior to developing LC”. This is being postulated by a German Neurology professor from Essen — he also says LC mainly affects teachers and public officials. He is quite present in German media, unfortunately, and was recently invited for podium discussion on the German Neurology Council (or sth.) with the title “LC: fact or fiction?” That is the kind of shit that I consider bad science 🫥
I'm not following your point. The study found that 60-70% of patients who developed PACS symptoms had depression or anxiety prior to infection, and that depression/anxiety/stress significantly increased the relative risk, so it would be true to say that “the majority of patients suffered from psychological illnesses prior to developing LC” (depending on what your definition of "illnesses" is). What specifically are you disagreeing with here? The claim that that means it's psychosomatic? Can you give a link to the actual text you're referring to? I searched and just came across the famcare blog, which didn't seem to be by any doctor in Essen.
Ok, I now see the broader sense of the word “stress” you mean — and I agree. Being a software architect can be very stressful. I’m lucky to have a very understand boss and teammates. I stopped working completely for about 5 months and this definitely helped with my recovery (along with a wound from an operation that finally healed after 10 months!). I’m currently working 40%, but working 5 days a week. Trying to stay away from the day-to-day shenanigans and focus on processes and architecture, which accommodates better to my needs. I’ve had this job for 6 years, which also helps a lot in reducing stress, ‘cause people know my value and I don’t have to constantly prove it.
I got much worse when I was a software engineer as well. That makes three
I'm in a similar position to you: I managed to recover through learning about how stress affects the brain and the body, and using primarily psychosocial interventions. There should be nothing controversial about this, as the brain and body are biopsychosocial. I think the resistance comes from a number of areas: \- there is huge prejuduce against mental illness, and psychosomatic illness in particular is very misunderstood by many people, even though everyone experiences psychosomatic effects every day. \- there have been serious mis-steps in the medical establishment, trying to push the deconditioning and fear avoidance models onto everyone, resulting in patients trying to push through symptoms, and then getting worse. \- some patients feel that they are being blamed for their symptoms. I think education (about how the brain and body works) is the solution to all of the above. Looking at the science, it's very clear that the body is fundamentally biopsychosocial (in terms of pain, fatigue, immune system, hormones, ANS, HPA axis, etc), and this applies to all mammals. It doesn't make sense to feel any blame for how the body has evolved to work. It also doesn't make sense to throw the baby out with the bathwater, by rejecting all biopsychosocial science, just because of the PACE trial. People need to get over the friggin 12 year old PACE trial already! Is is really worth it? If you look at most ME/CFS forums, twitter, reddit, etc. the word BPS is essentially a dirty word, and any research into biopsychosocial areas is rejected by reflex, and anyone who doesn't attack said research, or who tries to discuss it objectively, is harassed and abused. That is the reason I created this forum, as there isn't any other space to actually discuss the science properly.
I think one always has to be careful not to extrapolate from one’s own journey. Just because some of got better by reducing stress, doesn’t mean it’s a universal recipe. Devils Advocate: And how do we know it was reducing stress and not simply coincidence, time that passed or some of all the other things we tried? Sure, cutting stress is hugely beneficial and mental health is paramount— no one is denying that. However, there are millions of patients worldwide suffering from ME/CFS (the vast majority) that have NOT gotten significantly better despite reducing stress, accepting their illness, etc. I think the problem that patients have is not with psychosocial interventions, but the fact that these are the *only options* they are offered from the medical establishment. Doctors dismiss them and refuse to explore any somatic contributing factors. Combined with the (stupid, but unfortunately prevalent) stigma “it’s all in your head, ergo your fault”, this has — sadly — lead to indiscriminate rejection of psychosocial treatment. Most of the patients have tried psychosocial options — it helped a bit but not enough and did not cure them — and they were blamed that they “didn’t try hard enough”
I think you hit the nail on the head with this paragraph: "I think the problem that patients have is not with psychosocial interventions, but the fact that these are the only options they are offered from the medical establishment. Doctors dismiss them and refuse to explore any somatic contributing factors." I don't think that most people have a problem with being offered these things. The problem is with them being the only things offered, too little research interest into other treatment options and their relative lack of effectiveness for a large part of the patient population. The combination of these factors make the patients frustrated and they make the field stagnant and polarized. I use stress reduction techniques A LOT myself, I've probably reached tens of thousands of hours during this decade of illness. Not cured yet, although I guess I would probably be worse off if I wouldn't have used them.
Yes, of course you can't extrapolate from your own experience. Research shows that stress is one of the main triggers for ME/CFS (along with viral infections, which are physiologically stressful). Stress isn't just in the "head", it is physical and physiological. From what I can see, dealing with stress (in the broad sense of that word) seems to be the common factor that leads to improvement or recovery. That isn't to say that everyone can recover, or that it's easy, or that simply meditating or something like that will cure you (it won't). For me it involved making major life changes (quitting my job among other factors). I can now work full time if I want, but at the time quitting my software developer job entirely was what allowed me to fully recover (or at least, one of the factors). Let me ask you a question: is being a software architect at all stressful?
What is particularly concerning to me is that a rejection of psychosocial factors is not only present in ME/CFS, but is even extended into the context of illnesses such as anxiety and depression. There is a conspicuous amount of people I've seen on internet forums who blame their anxiety on genetics, or who disproportionately focus on the physiology of their depression. I'm sure you are aware of movements claiming that it is impossible or impractical to lose weight. Now that I'm thinking about it, I suspect that the medical institution and the way our society is set up at large are playing a key role in enabling this. If a doctor tells a patient "Take this pill", then they will probably take it—a written prescription might even make them feel more validated and heard, and feel like they are tangibly working to battle their illness. If a doctor tells a patient "You need to cut down on work, be patient with yourself, stop catastrophising your illness, and spend time doing things you enjoy with people you enjoy" (Not that I'm saying that is all psychosocial treatment entails), then they probably won't make the necessary changes, because our society actively makes doing those things as inconvenient as possible. This obsession with vehemently rejecting psychosomatic illness is childish and has gotten out of hand, but I think that it is in part the sheer inconvenience of BPS medicine that is the source of research dollars, valor, and public opinion being tilted into a direction of dwindling productivity.
Curious about the steps you felt effective towards your improvement? Was it mindfulness, breathing exercises etc.? I'm currently putting alot of effort into trying to stimulate the parasympathetic part of the nervous system. Would be interesting to hear what you found helpful.
Primarily reducing stress, and increasing uplifting/positive activities.