lindsaywaterman

High point of my life was getting a new stove and toilet into my Honda fit while a guy parked next to me had no way to lift his new potted plant into his pickup flatbed.

I'm just so sad his memoirs were burned

Exactly - mental, physical, and emotional work. IMO real pacing is extremely difficult, requiring a real transformation in life approach over the course of 3-5 years. And without certainty that making the sacrifices will pay off, most people take only half-measures, get poor results, and conclude it doesn’t work.

Reasonable question! I ask myself the same. Always good to open to other points of view!

I would say most of the 100s of patients I have seen w cfs or fibro haven’t given pacing a good try - either they do t have the common sense you mention, or they do, but are unable to make the changes required to actually pace. Ie making boundaries with family, leaving an abusive partner, taking time off a cherished job etc. And then, it is very rare for a person to, once they have removed these more external sources of stress, start to work on pacing their internally generated stress (ie “free floating anxiety” etc) through dedicated mindfulness and appropriate psychotherapy.

Thanks for your response - I see cfs as the result of almost “wear and tear” on the system. I think the “push-through” approach to life that many cfsers had prior to developing the disorder is very adaptive. I often meet v cfsers who had been v high functioning in their careers. It’s just that the adaptive response is not sustainable long term for some people…thanks for listening and cheers!

Good question - one of the soft clinical signs of a person with css I’ve noticed: they come to clinic w a thick fantasy novel in hand.

So imo every activity can facilitate dissociation to a different degree depending on the activity and individual. Gaming, gambling, stress eating, and actual substance use out on one end of the spectrum. Hiking, gardening in the middle. And mindfulness body scans on the other end.

Nice response thanks for that. I’m also a cfser but can’t really point to any viral thing personally. I appreciate your skeptical eye.

Yes that’s pretty typical. Some people go in stepwise, some go in all at once. I think you got lucky with your complete recovery, although that is common after about a year for long Covid in particular.

Well - I myself had cfs and found that pacing and mindfulness really helped! I think these approaches have been empowering for both myself and hundreds of my patients. And there is some clinical research there to back my opinions up. however I am always open to and hopeful that other approaches like those that go via the microbiome, will be helpful.

Love to see this response, thanks.

I just want to clarify that I absolutely agree that there are a multitude of pathophysiologoc changes in cfsers, including mitochondrial dysfunction, hrv changes, ongoing viral reactivations, deranged cytokines etc. I think the difference in our opinions is just that I my opinion, these physiological changes are downstream of cns dynamics in the lateral frontal pole, pituitary gland, amygdala, and cerebral cortex. At any rate - thanks for your thoughts.

Yes everyone is stuck in mind/body duality. From a neuroscience perspective all psychology is instantiated through the nervous and endocrine systems. So it’s reasonable to me that a habit of mind such as chronic dissociation - could have an outcome in physiology such as cfs. Like you I am patiently awaiting biomarkers or other reliable indicators.

You’re totally right that worse somatic symptoms create a viscipus cycle of avoidance and worsening symptoms. I do think that a chronic pattern of avoidance is what causes somatizing in the first place tho. Peace.

I'm really sorry you're suffering so much with this. As a 33 year old a ME/CFS diagnosis represents such a loss. I should know as I got CFS as 32! Now after recovering myself and working with 100s of pts, ... well I have my opinions. I def think there is mitochondrial and other physiology involved so in that I agree with you. I'd just say - try some pacing, see if you can get into the mindfulness. Maybe it will help!

Thanks for these - don't have an opinion on either but will look into. Broadly, I think immune dysfunction is a feature of most cfs so there is often a positive EBV test, or HSV test. I suspect this is more "downstream" than causative of CFS. However, it may be that there is a biomarker in the mitochondrial function, bone marrow etc...I hope one is found!

Yes so - I have noticed my patients will often get surprising benefit from some random medication, dietary change, etc. But usually, unless they deal with the underlying emotional dynamic of avoidance/push-through, etc, the improvement will not be resilient. Ie the symptoms return after a while...

Hello - I'm not sure I totally understand your question however I am sorry you have suffered so much with this. In my experience there is often an overlap between central sensitization and other chronic illness. So for instance, 30% of people with Rheumatoid Arthrtiis have fibromyalgia. Which means ,they have joint pain and fatigue even when there is no active RA. So it's never wrong to try a pacing approach to see if it helps. Good luck! (cfsselfhelp.org)

Yes, there's a lot of terminology out there to describe this constellation of symptoms/the process of CSS. The sarno stuff is getting a lot more attention these days as "psychopysiologic" therapy. Things are moving in a good direction and I'm hopefull that repression will be characterized neurophysiologically. See the references I posted to another comment.

MD here - I'd disagree. Although I've heard the same take from many other phsyicisans! Anyone who has worked with the condition (I've had 100s of CFSers by now) knows it's a pretty distinct syndrome. The CFS push-crash cycle especially is quite distinct.

Interesting - yes my take on this is that gaming is a dissociative activity, so typically the symptoms will resolve during the activity, but afterwards will make CSS/CSS worse.

Yes it's tough, this area of medicine is historically neglected. That's starting to change though. Here are some interesting sources:

1. Neuroscience of dissociation: Bramson, B., Meijer, S., van Nuland, A., Toni, I., & Roelofs, K. (2023). Anxious individuals shift emotion control from lateral frontal pole to dorsolateral prefrontal cortex. Nature Communications |, 14, 1234567890. https://doi.org/10.1038/s41467-023-40666-3 2. Using psychophysiologic treatment for long covid and back pain: Donnino, M., Bs, P. H., Mehta Ba, S., Silverman Ba, J., Cabrera Ba, M. J., Yamin, J. B., Mph, B., Ma, R. T., Berg, K. M., Phd, R. E., & Grossestreuer, A. v. (n.d.). Title: Psychophysiologic symptom relief therapy (PSRT) for post-acute sequelae of COVID-19: a non-randomized interventional study. https://doi.org/10.1101/2022.10.07.22280732

and

Donnino, M. W., Thompson, G. S., Mehta, S., Paschali, M., Howard, P., Antonsen, S. B., Balaji, L., Bertisch, S. M., Edwards, R., Ngo, L. H., & Grossestreuer, A. v. (2021). Psychophysiologic symptom relief therapy for chronic back pain: a pilot randomized controlled trial. PAIN Reports, 6(3), e959. https://doi.org/10.1097/PR9.0000000000000959

and

Williams, A. C. de C., Fisher, E., Hearn, L., & Eccleston, C. (2020). Psychological therapies for the management of chronic pain (excluding headache) in adults. Cochrane Database of Systematic Reviews, 2020(8). https://doi.org/10.1002/14651858.CD007407.PUB4/MEDIA/CDSR/CD...

as well as a review looking at the connection between early childhood adversity and fibro

Varinen, A., Kosunen, E., Mattila, K., Koskela, T., & Sumanen, M. (2017). The relationship between childhood adversities and fibromyalgia in the general population. Journal of Psychosomatic Research, 99, 137–142. https://doi.org/10.1016/J.JPSYCHORES.2017.06.011

there's a lot out there but year the research is still in it's infancy ...

Yes Temporomandibular disorders are included in the group of Central Sensitivity disorders.

I think the psychological/physiological duality is false. Think of blushing for instance: embarrassment causes vasodilation. I suspect CFS is at its core some type of autonomic dysfunction. This is why many medications do work: some of my patients have had great response to LDN and I'm glad it's been beneficial for you. As for the mindfulness and pacing...yes not everyone gets benefit. A lot of troubleshooting required - it's difficult to figure out for sure. Good for you for doing that though!

Ouch, you're coming at me red hot there! To be clear, I think post-viral syndromes are a common "proximal" cause of CFS. If a patient doesn't have an underlying dynamic of chronic dissociation, and doesn't already have a few other CSS syndromes, then I think it's unlikely they will develop CFS as a post-viral syndrome. Cheers.

Physician here. Imo CFS is best understood as the endpoint of an evolution within the nervous system that is increasingly called "central sensitization syndrome." (CSS) This syndrome is caused by a chronic dissociative or avoidant stress response, usually having it's origin in early childhood adversity. Prior to developing CFS, most individuals have other manifestations of CSS, such as IBS, chronic pain, TMD, etc. Every new stress, be it a viral syndrome, a grief event, a difficult move of house, what-have-you, can cause CSS to further evolve, eventually arriving at CFS. The average CFSer has 5 other CSS syndromes. Treatment is pacing and mindfulness. This treats the underlying issue of chronic avoidance/dissociation. See cfsselfhelp.org.

I think of starship works well permanent LEO habitation is next. Once space access is cheap enough…space hotels are an obvious first move to commercialization.

Konrad Lorenz discusses this in Solomon's Ring. He says that it's fine to cage animals that have limited territory in nature. Thankfully, many reef fish, like clown fish, have limited ranges in nature, so thrive in tanks.

Such a meta project. Autists are splitters. Empaths are lumpers.

1. Pharmaceutical studies are extremely expensive so usually done through private sector. In this case compass has a patent for a certain way to synthesize psilocybin, but not a patent on psilocybin itself. However, the results of the study will generalize to psilocybin of all sources. Win win in my view.

2. There are many studies in the literature that compare "psycholytic" (which tend to accentuate pre-existing mental states) to "psychedelic" (which can trigger mystical/insight experiences) doses of psilocybin. I'd say it's reasonable to treat 1 mg as placebo.

3.i. The study followup is ongoing. One of the remarkable aspects of psilocybin treatment is that one dose can lead to lasting (ie >6 mo) effects on mood. See the john hopkins studies.

3.ii. Although the studies all have folks weaning off, concurrent SSRI, MAOI, and anti-psychotic use is not an absolute contraindication. They do not cause serotonin syndrome with psilocybin. But clinically I think this won't be a huge issue as most patients will only be trying psilocyin if 1. their ssri has failed or 2. they are opposed to trying ssris. cheers!