“You have to believe the patient”: What do people with fibromyalgia find helpful (and hindering) when accessing health care? 2023 Nishikawara et al

Background
Fibromyalgia (FM) is a complex, still poorly understood, and difficult-to-treat chronic pain condition for which many people struggle to find adequate care.

Aims
This study investigated the research question, “What do people accessing health care services for fibromyalgia perceive as helpful, hindering, and absent but desired?” with the aim of identifying clear, implementable changes for clinical practice.

Materials and methods
This study used the enhanced critical incident technique (ECIT), a qualitative research method that focuses on helping, hindering, and desired factors, to explore the health care experiences of 14 individuals (12 women and 2 men) diagnosed with FM.

Results
Using qualitative data analysis, results identified three categories of health care experiences: (1) systemic navigation, including financial and economic security; accessibility, flexibility, and continuity of care; and diversity of treatment options; (2) clinician–patient alliance, including invalidation and prejudice; therapeutic bond; and clinician–patient alignment on treatment plan; and (3) patient self-management strategies, including information-seeking and education, self-advocacy, social supports, symptom management strategies, and other coping strategies. Participants tended to conceptualize their health care concerns as a multilayered systemic problem.

Conclusions
Participants described a medical system they perceived as poorly equipped to support their needs and tended to invalidate their health concerns. Helping experiences tended to be the result of unique efforts on the part of individual clinicians. Findings emphasize the importance of recognizing the complexities and psychological impact of pain, trusting clinician–patient relationships, multidisciplinary/interdisciplinary care within a biopsychosocial framework, and improved education and awareness around psychosocial aspects of FM and effective management of chronic pain.

Open access, https://www.tandfonline.com/doi/full/10.1080/24740527.2023.2176745

 

It's much more preferable to delete the psycho portion of the treatment and focus on developing effective biomedical treatments and a cure.

Shunting people off into the "I hear you saying", and "How do you feel about that" category, does not provide effective treatments or a cure.

 

It's literally discriminated against. What the hell is up with pretending this isn't happening or has nothing to do with the horrible outcomes that are literally described as blatantly discriminatory?

What is missing? Medical care. The rest is irrelevant when it concerns healthcare, this is what medicine is about. The fact that they refuse to is why there is no medical care. Simply put: there is no medical care because doing the work required to do something effective has been rejected and the patients are discriminated as not even having medical issues.

There have been "studies" like this for decades and they always present the same picture: failure through discrimination. It's the discrimination. Discrimination is not a passive event, it's a conscious, deliberate choice. You end the discrimination, and we can start having competent medical care. None of this is hard, it's all politics. There is no technological, scientific, or even economic, barrier here. It's a human failure.

But the blame resides in one place and one place only: medicine. And this is why nothing can change, because even when it's all spelled out this way, there is a systemic inability to simply put the blame where it lay. Solving a problem requires acknowledging it. It never is. As a choice. A conscious choice.

And of course this is complete horseshit:

Patients don't care about any of this anymore than they care about the programming language their software is coded with. This is about outcomes, and the BPS model is complete garbage at delivering anything. This is yet another "listening" experience where, somehow, things that patients don't care about is emphasized because this is how it always happens: they don't listen and there is no accountability.

 

The framing for those is "within a BPS framework". No one cares about a BPS framework. Not one damn patient. Competent medical care is what people expect out of medical professionals, it is what they're trained to do and outside of human biology and physiology they got nothing. The rest is nice but they're not trained or competent at it, it either improves thanks to competent medical care, or nothing matters.

There is no trusting relationship on a basis of denial and incompetence, the whole idea is ridiculous. Medical literature is filled with the same pattern: "X patients are horrible, we can't even define them and they're always complaining", then breakthrough occurs, and suddenly none of this is ever discussed.

There isn't a single person who would accept this in any other context. "Took my car to the mechanic, completely ruined it, but he was funny as hell and we had a good time" is not a thing. Replace any variation or context and it's just as silly. And medicine doesn't know a damn thing about "psychosocial" aspects of this and that, and they clearly can't manage chronic pain anyway. This is all aspirational stuff that fully takes the place of the one and only thing people care about in health care: health care.

 

Important point @Hutan. Yes, if a practitioner seems to understand, or at least empathize with a patient/client, and promises help, for a poorly understood or maligned disease such as ME, people may flock to that practitioner, because they engender hope. In the end, the practitioner may charge large amounts of money for little to no actual help.

 

This is an enormous problem, bigger than people realize. I have very big displeasure with all ME organizations for the reasons you showed but i don't voice it because i have no energy, resources or leverage to make something better happen so my opinion has no value really.

Still, I'll write my experiences.
I've been involved personally for years with organizations in my country and it's always the same vomit inducing shenanigans. Doctors who have no clue what they are talking about, making outrageous claims with no evidence (or sometimes forged evidence!), scamming patients left and right, and if you say anything about it you are the bad guy, how dare you. Doctors are untouchable, they are gods, even when they are blatant scam artists. ME definitely has a psychiatric/secondary illness benefits component and you say otherwise you will be ostracized.

Patients keep going with the same pseudoscience for years, decades even and never demand anything better. Homeopathy, quantum medicine, hypnotherapy, magical water therapy, you name it. It's always the same shit over and over. I have given up interacting with these people.

It's my opinion, as unpopular as it may be, that (most) patients deserve the current state of events. If we actually knew what we were doing, the BPS cartel wouldn't stand a chance.

Even right now, with long covid, most patients seem to be chasing the senseless #teamclots hype instead of demanding the NIH does something useful with the 2 billions they allocated to LC research. It's really doomed, at least that's what i think. Maybe decodeME will turn the tide, or perhaps the intramural study or something from Maureen Hanson.

 

I appreciate your optimism, but it's much easier said than done. I cannot think of a way to achieve this without requiring an unreachable amount of effort and resources (for a person as sick as i am, anyway).

 

There are quacks and charlatans everywhere. A few people have told me I would recover if I signed up for some type of human potential stuff. Another said meditation was the cure. Still someone else said a multi-level marketing supplement they sold had cured them. A few weeks or months later they were back to being very ill.

This stuff is everywhere of course. The trap is out there for everyone.

If mainstream medicine had stepped up decades ago, we might have treatments, or at least not be treated like pariahs. Medicine could have made a positive difference. Instead, these institutions have shunned desperately ill people, causing many to seek out help from dubious practitioners, who peddle all manner of ineffective, yet expensive potions.

 

Funny, in dismissing the very necessary biomedical treatment needs of pwME, main stream medicine is significantly assisting alternative "medicine" in its quest to make lots of money. Something IME main stream medical practitioners are not happy about.

 

I don't think that false promises count here. There is wide gap between what the BPS model pretends to be, and what it actually is and delivers. The gap is the whole of reality.

For sure, anyone would want what it promises to deliver. What the BPS model pretends is nothing but a bunch of false promises. If it were still legal to sell stuff by lying, not only would most companies abuse it, but a lot of people would still want the free pony that was falsely promised.

The old standard for this used to be "buyer beware", but it was eventually recognized that this is simply not realistic in real life, that selling something but delivering something entirely is simply fraudulent, and it's better to ban the practice entirely. Medicine still applies this standard where they promise lies and deliver nothing, the BPS model is built strictly out of this "promise a pony, deliver a cardboard cutout of what may or may not be a pony, card-sized".

The BPS model sells a cure. Everyone wants a cure. But they don't have a cure. They are lying. One can fault the mythical person who buys a bridge from someone who doesn't even own it, but this is a situation where the government basically vouches for the validity of the "sale", then takes the side of the fraudster who sold a lie. There is truth in advertising. There is supposed to be truth in medicine. This is why they de-medicalized it: so they can lie freely and with impunity.

 

https://news.cornell.edu/stories/2023/04/95m-fund-chronic-fatigue-syndrome-research

 

That's an absurd figure for prevalence, it's nearly 1%. Even the overly inclusive 1994 criteria is about 0.2%, going to have to quote myself again: