Why the Psychosomatic View on [ME/CFS] Is Inconsistent with Current Evidence and Harmful to Patients, 2023, Thoma et al

Abstract

Since 1969, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has been classified as a neurological disease in the International Classification of Diseases by the World Health Organization. Although numerous studies over time have uncovered organic abnormalities in patients with ME/CFS, and the majority of researchers to date classify the disease as organic, many physicians still believe that ME/CFS is a psychosomatic illness. In this article, we show how detrimental this belief is to the care and well-being of affected patients and, as a consequence, how important the education of physicians and the public is to stop misdiagnosis, mistreatment, and stigmatization on the grounds of incorrect psychosomatic attributions about the etiology and clinical course of ME/CFS.

Open access, https://www.mdpi.com/1648-9144/60/1/83

 

Havent the energy to read the article, and i of course agree with the fact that the psychosomatic paradigm has harmed us. But, are the 2 quoted statements actually correct? Have we got robust evidence of organic abnormalities, & do the 'majority' of researchers classify it as organic?

 

These are the biological abnormalities they cite, would be interested in hearing what ppl think:

The most important replicated abnormalities include a significant reduction in cerebral blood flow [27,28,29], endothelial dysfunction [30,31], a reduction in systemic oxygen supply [32,33], a reduced peak oxygen consumption [34], an increase in ventricular lactate levels [35], hypometabolism [36], and increased levels of autoantibodies against G-protein-coupled receptors [37,38,39].

 

• cerebral blood flow [27,28,29] - I've always thought these findings are very interesting but they are findings from one group of doctors that only do this experiment in their own practice and this experiment is sort of the selling point of their practice. Unfortunately, as of today the findings haven't been replicated by a different group or even in a different setting. Someone should definitely work on replicating this, but without that it's hard to say much about it.

• endothelial dysfunction [30,31] - Seems to have a lot of potential, but most studies that looked at this often seemed to have some problems in matching controls sufficiently well, since endothelial function can also be impacted by inactivity. Could be a somewhat robust finding in the future if that obstacle can be overcome.

• a reduction in systemic oxygen supply [32,33], a reduced peak oxygen consumption [34] - Is related to anomalies in CPET studies. Unfortunately, CPET results seem to be somewhat mixed which might be caused by varying methologies, bad cohort selection or these findings detecting downstream effects of ME/CFS. I'm not sure how much can be concluded from these studies, at least not as long as someone doesn't try to explain the differences in results.

• an increase in ventricular lactate levels [35], hypometabolism [36] - Can't say too much about this other than these results don't seem to have been reliably replicated.

• increased levels of autoantibodies against G-protein-coupled receptors [37,38,39] - Fully disagree with the authors on this one. If you take all Scheibenbogens GPCR-aab studies together it seems very clear that the levels alone indicate nothing.

I also haven't read their paper, but at least in the statement you're quoting they aren't claiming the evidence to be robust, but just that it exists. It might as well be junk...

The most convincing evidence that ME/CFS is organic are not findings of somewhat inconsistent organic abnormalities that can sometimes simply be noise, but in fact that it has been reliably proven that it is not a psychosomatic illness (both in a treatment sense where psychosomatic treatments are completely ineffective, often even harmful and on an evidence basis where it has been reliably shown that there are no psychological abnormalities that aren't downstream effects of an organic illness) as well as any psychological theory being completely inconsistent with the most basic evidence and rules of logic.

If one were to disallow the use of MRIs, MS doesn't magically convert back into being a psychological disease. For ME/CFS the analogue to an MRI simply hasn't been found yet.

 

They are irrelevant really. What matters is that a few intelligent researchers are now in a position to make some progress. Let us see what 2024 brings.

 

If it were the case then securing funding for biomedical research on ME/CFS should be much easier, as grant reviewers are researchers themselves. And presumably the authors wouldn’t have felt compelled to write this article if the situation were truly as they say.

 

But there's a difference between the "majority of researchers" and what is held as received wisdom and "evidence-based" by clinical medicine. Some of the people on grant-reviewing panels may be clinicians without a research background and there will be lay members who hold "common sense" views on disease causation.

This parallels investigative techniques that are available to researchers vs standardised clinical tests available to doctors. In theory, every single one of us could have eg orthostatic challenge to cerebral blood flow, MR spectroscopy for muscle or ventricular lactate, advanced immune profiling or a 2-CPET, one or more of which would likely show an abnormality. However, most of us are in the all-(clinical)-tests-are-normal boat.

I've probably commented before that it may require going as far as governments legislating an embargo on psychosomatic medicine, or at least independently overseeing its research and clinical practices. However, perhaps the discipline will mature, learn some and self-correct; though personally, I think the whole thing should be thrown out and replaced with "we haven't worked out the biology yet".

I note this comment on BlueSky today —

https://bsky.app/profile/kirkmurphy.bsky.social/post/3khuaohvxyl2g

Board-certified in Consultation-Liaison (neé Psychosomatic Medicine) here. Completely agree. The cause of the symptom set we see in fibromyalgia, ME/CFS, & persistent Covid/Long Covid is absolutely the pervasive disruption of our undergoing biology.
Our psychology does *not* cause that disruption.​

 

Agree on the needing to legislate an embargo on psychosomatic medicine.

I'm most pleased to see this article includes 'why it is harmful to patients' because this is the part that needs to be underlined and talked about more. It is devastating and I will be interested to read it in detail and hope more articles underline the wealth of harms, both from the ideas and treatments but also the dystopia it causes utterly consuming people's lives.

In my mind it is an area that doesn't care if it causes harm, and doesn't care about any sort of science in its papers just fallacial argument - which makes it merely propaganda or fraud where it claims something as 'proof' or 'evidence' when it doesn't fit either of those bars. Particularly where the claim being made is obviously disgusting and devastating for someone's future and freedom and human rights (like making up the idea they've found people with 'delusions').

How is an area both allowed to be flippant with pretending whether it is harmful and not have to be robust on whether what it actually says is a lie.

You can't make those things up about other minority groups at will just to say and spread it without being accused of hate speech and in this instance it is being used to hold power over people in health situations and mental health situations which is simply not due to those professionals based on someone's manifesto's claims. This is a real issue with massive consequences on life, health, access, freedom, people's own testimony being heard, disparagement of who they are, rewriting of their history of what they did and their personality.

The only thing it has proven useful for is identifying how heinous and grim some of the thoughts of these named individuals writing them are in order that you would hope one day someone can find law for it, legislation and safeguards for it (so their weasel words hiding nasty ideas are written down and can be outed as meaning what they mean e.g. in a workplace or service situation), and dealing with these wrong-headed individuals with insidious ideologies.

I'd hope lessons will be learned about how they 'sold' under false claims (saves money at any cost lies) their wares in order that those weak pathways can be looked at very carefully indeed too in order to protect against such huge sums being directed at such useless, careless people. And that there will be implications for those with positions of power and responsibility, professional status or selling something where they cannot prove that something which they cannot prove would not be deleterious to someone has not been evidenced by proper sound method, as per sciences.

 

Considering the lack of any meaningful scientific rigor displayed in different subfields of psychology and psychiatry by some influential researchers it isn’t surprising that exactly these fields currently have a massive replication crisis and a long history of “wrong and harmful statements that clearly never had any meaningful evidence”. Seems like a wide consensus appears to be “we never figured out how to do unblinded studies, so we don’t care about any rigor to being with.”

One only has to think of all the medications that appear to work in unblinded trials relying on subjective outcome measures and contrast that with the miniscule amount of medications that actually work when one begins to look for solid evidence. If similar methodologies were applied elsewhere rhinoceros horns would all of a sudden become a cure for everything.

Unfortunately, in said fields scientific methodologies have largely remained extremely poor with the reasoning often not being too different to a hundred years ago when Freund also claimed all sorts of nonsense with the evidence often being “it is so, because I say so”.

However, general embargoes on different fields in research don’t make any sense to me or at least don’t seem fruitful in the greater scheme of things (other than those embargoes that already exist due to clear ethical problems). I believe there are probably also many psychologists and psychiatrists who do proper scientific work with rigor and whose work has helped millions of people that do have psychological problems. The problem are those that don’t do this, this is where change has to happen, but this change has to be somewhat intrinsic and also happens from within and begins with researchers seeing the value of solid research and rigorous methodologies. This also applies to other scientific fields. After all the biomedical research into LC and/or ME/CFS is often of poor quality as well and pharmacological research is typically equally uninterested in finding scientific truths. There's different incentives that can come from the legislative side that would help to increase rigor and would help in creating methodologically sound research, some of these are mundanely easy to implement (for example all work and data having to be open access or incentivising the publication of negative results and establishing the view that these are of the same worth as positive results, making changes in grant funding processes as well as publication processes etc). There's scientific disciples that don't suffer from a replication crisis. In many instances one can already gain a lot by applying the methodologies and enforcing the same rigor that they have established.

At the end of the day one doesn't need a general embargo on psychosomatic medicine, all one needs is that funding for LC and/or ME/CFS heavily prioritises rigorous biomedical research, as it should be and similar to how things already are in other fields of biomedical research that actually produce meaningful results.

 

Most grant reviewers and all major medical school textbooks regard this illness as psychosomatic.

 

Unfortunately the number of people studying psychology has increased dramatically:

"Psychology is one of the most popular subjects to study at degree level: over 24,000 students were accepted onto UK undergraduate courses alone in 2019, accounting for one in 20 students1."

(I presume they are psychology students - poor grammar!)

https://www.nuffieldtrust.org.uk/re...on-and-progression-in-psychology-career-paths

"The total number of registered psychologists increased by almost a quarter (24%) in the six years to April 2020, to 24,621."

I did a year's 'social psychology' due to there not being enough animal-free medical science subjects at the Open University, and was very sceptical about a lot of it.

My niece has just qualified with a psychology Masters degree.

It seems to be cropping up everywhere on the TV, radio and news websites.

 

I'm concerned that the harms done by psychosomatic misdiagnosis in ME have so far failed to take into account the devastation this causes within families. I've long since lost count of the number of people I've heard describe the intense psychological trauma they are experiencing as a result of family members blaming them for their apparently psychosomatic ME, denying care, actually providing the most harmful kind of environment, and it leading to estrangements between close relatives which can last for the rest of the patient's life. Not to mention the broken marriages and the consequences on the children. My own experience was of a shattered relationship with both my parents. This has impacted the lives of their grandchildren as well. It can literally do damage down multiple generations. A doctor spends 5-10 minutes looking at test results and giving the patient the diagnosis. They then have to live with the downstream consequences disrupting home and family life as well as the care and support they most need from those close to them, often for the rest of their lives. I feel this needs to be given proper attention.

 

Probably just a reflection of the fact that the vast majority of published research is biomedical and doesn't bother with the wishy-washy BPS stuff. So it's technically correct, but still wrong. Because only the minority of psychobabble pseudoresearch has any effect on the real world, and in the real world clinical knowledge and guidelines are all based on the minority psychosomatic viewpoint out of tradition.

So that's a bit like saying that a feudal society is largely egalitarian, since most of the peasants are quite equal to one another. If you discount the all-powerful aristocracy lording over them, by number this is a somewhat true statement. But in reality, might is right, and the psychobabble ideology has all the power.

 

Problem is... who would give this attention? Psychology. So it's really not going to happen, in a "who will police the police?" kind of bind. Same with psychiatrists. If they examined their own behavior towards us, all the harm that they cause, it would be hard not to see a high level of narcissistic delusion and harmful behavior. But they can't see that in themselves, and no one else is qualified to see that in anyone. They evaluate their performance not on the outcomes, but on their intentions. And they evaluate us on our outcomes, where we remain ill despite their intentions, not our intentions. Classic false attribution error, but they also can't see that in themselves.

There is really zero chance that psychosomatic medicine will ever grow up, so we can really forget about that. In the end, the only thing that matters in medicine, as in all sciences, is technology. It's what frees people from having to rely on their judgment, which is always the worst case. Problem with medicine is that technology only ever affects the cutting edge, the basics remain the same. Medicine is otherwise almost exactly the same as it was when I was a child, even though they make enormous progress all the time. It's just that all this progress is super specific and never generalizes, while the common stuff has actually gotten a lot worse, enough to make up for all the progress.

I'm still with the idea that AI is the only possible change to this. It will affect the basics, the common stuff, just as much as the cutting edge. Truth is we just never managed to do health care right, we don't have the resources for it. It's still too primitive to qualify is truly professional. The only way to solve those issues is to have the capacity to work on all problems, rather than whatever problem motivate them. It's really just a matter of time, but it will be up to technology, not human judgment or intent.

 

Part of the problem is probably that we don't have a lot of firm ground on which to build a case for major investment. Small studies exploring theoretical models get grants, but funders often want evidence that the results are compelling enough to justify in-depth work with larger cohorts. That'll hold even with ringfenced funds.

Also, making applications is really expensive. It's not hard to imagine a situation where a team hasn't got enough funding to undertake a promising research project, but hasn't got enough staff time to apply for it either.

 

The psychosomatic view is incoherent and on closer inspection looks more like a collection of depreciating prejudices than a serious attempt to explain reality.

I suspect it's closely related to narcissistic fantasies.

 

Quite right MeSci - far too many psychology students. This has worried me for a number of years. Of course not all BA/BSc psyche students will continue to do psyche postgraduate courses, but loads will. And most start at such a young age - huge numbers of psyche students being trained into accepting low quality studies.

 

I had my own thoughts about this, so I asked ChatGPT.

_____________________________________

Q:
Why do people study psychology?

A:
People study psychology for various reasons, as the field offers a wide range of fascinating topics and applications. Here are some common reasons why individuals choose to study psychology:

1. Understanding Human Behavior: Psychology is the scientific study of human behavior and mental processes. Many people are inherently curious about why individuals think, feel, and behave the way they do. Studying psychology provides insights into these aspects of human experience.
   
   
2. Personal Growth: Some individuals pursue psychology to gain self-awareness and personal insight. Understanding psychological principles can help people navigate their own thoughts, emotions, and relationships, leading to personal growth and development.
   
   
3. Career Opportunities: Psychology offers diverse career paths. Graduates can work in clinical settings as psychologists or counselors, in educational institutions, in business and organizational settings, or in research and academia. The versatility of a psychology degree opens up various professional opportunities.
   
   
4. Helping Others: Many individuals are drawn to psychology because they have a desire to help others. Psychologists and counselors often work with individuals facing mental health challenges, relationship issues, or other life difficulties. They provide support and guidance to improve the well-being of others.
   
   
5. Research and Discovery: Some people are intrigued by the prospect of contributing to the understanding of human behavior through research. Psychology research can lead to discoveries that enhance our knowledge of cognitive processes, social interactions, and mental health, contributing to the overall advancement of the field.
   
   
6. Problem Solving: Psychologists are equipped with skills to analyze and solve problems related to human behavior and mental health. This problem-solving aspect attracts individuals who enjoy applying critical thinking to real-world situations.
   
   
7. Social and Cultural Understanding: Psychology delves into the influence of culture, society, and social factors on human behavior. Studying psychology helps individuals develop a deeper understanding of the ways in which these factors shape individual and group behaviors.
   
   
8. Communication Skills: Psychology programs often emphasize communication and interpersonal skills. Graduates are equipped with the ability to understand and communicate effectively with diverse groups of people, a valuable skill in various personal and professional contexts.
   
   
9. Preparation for Other Fields: Psychology provides a solid foundation for individuals interested in pursuing careers in fields such as law, marketing, human resources, education, and healthcare. The understanding of human behavior and decision-making is applicable across a wide range of disciplines.

_____________________________________


The last item is what I was thinking of. I know real people who studied it in order to work in marketing and HR, and I guessed there were probably other fields too. In some careers, where specific training is more likely to be a postgrad course than an undergraduate degree, it can look quite good on a CV. I even know one individual who tried to get a job in a call centre, but wasn't considered because he didn't have a degree in a communication field such as psychology. (They presumably thought he got his first class BSc in engineering without ever talking to anyone.)

So we're not necessarily training a vast army of psychologists ... just a fairly big one.

 

However the psychology students will then carry the rubbish-research informed, fact free 'psychosomatic' ideology into whichever career they then pursue.

 

Yes, in some cases. Generally, though, it seems rare for much of the content of a course to follow through into a career, even if you're working in the same subject area. You're going from the theoretical world into the real one and life is very, very different there. I couldn't believe some of the processes and approaches graduates had been taught when I encountered them in my former job.

People are influenced much more by the organisational culture they move into. If you work in music marketing, as one of the people I mentioned above (the son of a close friend) does, the BPS debate is about as relevant as issues in tyre manufacturing, and you'll have roughly the same awareness of it. But you might learn to tolerate some of the more toxic aspects of your own industry.

Of course some people will be taught to drink the Kool-Aid and go on to guzzle epic quantities of it, because it's easy and they're lazy. But I really think some of the straws have been pulled out of their game of Ker-Plunk, and it's possible that at least some of it will collapse.