[ajb]

It seems dodgy to talk about "chronic avoidance/dissociation" being the "underlying issue". The word "underlying" is usually used to refer to the cause, when it's clearly a response. I think this will result justified distrust of your advice, despite your experience.

[lindsaywaterman]

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.

[smearth]

You might think that but it doesn’t heal anyone. Recovery rates for cfs are abysmal, I’m surprised you aren’t ashamed of your profession’s performance in this area. You seem comfortable placing responsibility for the illness on your patients “avoidance”. Yet it is initiated by a virus and everyone has different levels of mitochondrial density, resilience and health and different inflammatory cascades. “Avoidance” of what?

The medical profession has a chronic pattern of avoiding the fact they can’t heal anything involving more than about 4 variables. Explain how vitamin d, k, and serum ferritin interact in bone marrow please Doc or cholesterol’s role in cellular permeability as an immune defense or a vitamin D deficiencies effect on the permeability of cartilage and subsequent concentrations of potassium in the inner ears please doc, or latent hibernation responses, or the effect of obstetrics on the mitochondrial health of a population, or unknown pathogens or a combination of all of those things.

Because any combination of a breakdown in those things could be contributors to the fatigue you’ve attributed to avoidance yet your profession has avoided researching all of them. Your profession avoids the fact that medical research is mainly focused on fast financial returns.

I do think there is a chronic pattern of some doctors avoiding shame at their self-perceived inadequacies caused by their medical school trivial pursuit trauma conditioning that is useless for complex problem solving and then projecting that shame onto their patients in order to minimise the cognitive dissonance surrounding their ineffective treatment plans for chronic conditions . I cured my chronic fatigue - no thanks to your professions expertise - the avoidance was a necessary part of the cure while my body healed.

Some times people have bad luck. It is unavoidable.

[growingkittens]

I think you're reading the term "avoidant stress response" and the consequent term "chronic avoidance" as having a moral value. This is an issue with many medical terms.

In my understanding, these terms simply refer to how an individual tackles problems: do they avoid asking for help to the point of dysfunction, or are they able to ask for help when needed?

edit: Once an individual's systems are out of balance, it can be difficult to rebalance without the right perspective. If an individual cannot regain equilibrium due to interacting factors (such as someone who grew up without ever knowing equilibrium), the lack of balance becomes chronic.

[dwaltrip]

They weren’t blaming. They were attempting to neutrally describe their best understanding of the phenomena. Do what you will with the information.

But I understand your pain and frustration. I’ve had to carve my own path to find the healing I needed as well. It’s not easy. Good luck to you.

[jklinger410]

> You seem comfortable placing responsibility for the illness on your patients “avoidance”.

You are misunderstanding this. Subconscious avoidance is not about responsibility. Think of the way rabies makes people hydrophobic. That is a psychosomatic response. A person is not in firm "control" of these responses, although they sometimes can be addressed with therapy.

[smearth]

Yes sorry about that.

Avoidance is a part of healing.

If the body is not healing therapy won’t help it.

[whimsicalism]

> I do think there is a chronic pattern of some doctors avoiding shame at their self-perceived inadequacies caused by their medical school trivial pursuit trauma conditioning that is useless for complex problem solving and then projecting that shame onto their patients in order to minimise the cognitive dissonance surrounding their ineffective treatment plans for chronic conditions

The fact that patients consistently react in this way (or worse) I think is why we rarely discuss true causes of CFS nowadays in the medical industry. Many, many lay-people assign strong negative moral associations with having any somatic cause of their symptoms.

[paulmd]

> The fact that patients consistently react in this way (or worse) I think is why we rarely discuss true causes of CFS nowadays in the medical industry.

Well, it’s a vicious circle isn’t it? A lot of issues are dismissed by the medical community (and I disagree with the characterization that “it’s somatic” isn’t dismissive in practice) for decades and decades and simply not studied, until the cause can be medicalized and then suddenly it was real the whole time.

It’s not just that “patients are being irrational and picking up the wrong message”, that’s actually the same message that the medical community itself projects. These aren’t real issues worthy of study unless a causal mechanism can be identified. And for a lot of issues that’s simply been a matter of time, despite decades of doctors insisting it’s all just in your head.

Fibromyalgia and cystic fibrosis are classic examples of this. People have real, objective pain and the response of the medical field for years and years was “no you don’t” or “it’s in your head, you’re just stressed, you need to relax and it’ll go away”.

Microbiome is probably another that the needle is starting to swing on.

But in general, medical practice suffers heavily from the problem that if you can’t identify a mechanism, and you can’t prescribe a pill or cut something out to make it go away, it’s not treated as real. Medicalization is real and has a highly negative outcome on the direction of research in the field. And that in turn produces this barrier where doctors just want to make “somatic” patients go away and patients perceive this and know doctors aren’t really taking the issues seriously. And that degrades their trust in doctors and the medical community and creates this barrier to patient outcomes. That is largely your fault and not the patients, and the answer isn’t just “better bedside manner/explain the situation better”, it’s to stop ignoring issues that have negative QOL effects until they can be medicalized and then turning it into a $50k/y drug the next year.

It’s really that flip from “your pain isn’t real” to “it’s so real you’re going to have to pay $50k a year to treat it” that really drives the wedge. And that’s something of a US-specific problem of course.

But when people are paying $300 out of pocket for a GP visit they actually expect their concerns to be taken seriously and not just “it’s all in your head”. And I recognize that’s not a great position for practitioners either but again, the price tag you have chosen to associate your care with produces this need for acfual tangible outcomes and not “just change your whole life and make a bunch more money and life a much lower-stress life”. That simply is not actionable to most people. Just like semaglutide has done more for obesity than decades of doctor tutting about diet.

And again, this piles on top of doctors themselves providing objectively sub-standard care for vulnerable populations due to inherent biases etc - women, obese, etc tend to have actual medical symptoms dismissed at highly elevated rates due to inherent biases in practitioners, so these “weird” diseases tend to get the double whammy of doctors who don’t believe in the disease and doctors who don’t believe in the patient.

My aunt’s uterine tumor wasn’t clinically recognized until it was the size of a volleyball and all her pains were dismissed because of weight and because she was a woman. Imagine she had fibromyalgia. What do you think that doctor-patient relationship looks like? And that’s really on doctors not patients. This is the problem with the “we can’t recognize it and won’t treat it” - a lot of times the problem is doctors won’t recognize it, and this extends to the system of diagnoses itself. If it can’t be medicalized it’s not real.

[whimsicalism]

> These aren’t real issues worthy of study unless a causal mechanism can be identified

There are plenty of people studying somatic causes of CFS, they just get death threats [0].

I think the focus should be on destigmatizing 'somatic' explanations. That we view somatic explanations as dismissive for real conditions is not a problem with the explanation because some real conditions are psychosomatic and that is a fact of life. It is a problem with the stigma we assign to it.

[0]: https://www.theguardian.com/society/2011/aug/21/chronic-fati...

[paulmd]

You know, the point of this post was that “medical science is pretty bad at recognizing real, non-somatic causes of these diseases when the cause is not obvious, and instead tends to handwave onto somatic causes, and people generally find this offensive especially when the cause is determined another few years later and they’re asked to pay $50k a year for something their doctor was sure wasn’t real two years ago”.

And yet you’ve somehow both completely missed this point, and deflected onto “but doctors get pushback and even personal threats when they try to double down on this even harder”. Yeah, don’t default to telling patients it’s all in their head, after a while it gets offensive, especially when a few years later you try and charge them $50k a year to treat a disease you told them wasn’t real.

“Somatic research” is fine on paper but in practice it’s usually an excuse to deflect from a disease that cannot be adequately explained in medicalized terms. Everyone knows “somatic” means “in your head” and that inherently leads to a course of treatment that’s “get the patient to believe it’s not real”. And since many of these diseases do have medical causes that are not somatic (but not adequately medicalized for treatment) this gets offensive after a while.

[colordrops]

So what was your cure?

[smearth]

I gradually figured out what activities, supplements and foods reduced my susceptibility to fatigue and pain and then repetitively used them until I got to a point that I was no longer susceptible to fatigue within the bounds of what I consider a healthy fulfilling life so that I can now convincingly pretend to myself that I don't have cfs. I'm no longer staring into the abyss. I can't run a marathon or do too much mental grunt work but I can just make a modest living, go for a 40 minute zone2 run or 3 hour hike, be a parent, sustain a relationship and keep some friendships going. In the midst of cfs I could only really be a part time parent with support, everything else stopped and I had no certainty that it would ever start again.