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!