Myalgic encephalomyelitis/chronic fatigue syndrome: an overview of current evidence 2023 Ludwig et al

Give me a medical discipline and I will give you a discipline that has demonstrated a willingness to use psychology as a get-out-of-jail card. Cardiology. Pediatrics. Infectious disease. Rheumatology. I've personally experience it in three of the four.

It seems to me, however, the most egregious may be neurology, perhaps because of proximity and synergy, since ostensibly they both target the brain. The whole, you scratch my back and I'll scratch yours.

ME/CFS,and many cases of Covid, and Lyme, and Bartonella and the list runs on. These frequently all - to some extent - can fall under the neurology umbrella. How nice to be able to divest one's profession of pernicious headaches, and foist them on the eagerly willing, and absurdly unqualified, shoulders of another.

 

Yup, after 42 years with this illness it doesn't surprise me to see yet another such report. What does it cost to buy a neurologist these days? They should have their offices in the red light district of Vienna.

 

, best belly laugh all day to relieve me from the relentless psychoanalytic psychosomatic claptrap of the psychiatric establishment of many countries as they line up for another pop at post-infectious illness.

I am have word associations about flaccid muscles now. Oh dear, totally inappropriate.

 

OK, I have to say this before reading further in this article. The authors talk about "evident psychiatric comorbidity rates". So, what do the BPS'ers include as psychiatric comorbidtites? Well, we know about ME, and IBS.

Looking up other"psychosomatic symptoms", respiratory problems, pelvic pain, seizures and other symptoms without a physical cause are considered psychiatric conditions.

I contend, practitioners have either not done a thorough investigation of these and other symptoms, or medical science has not advanced to the point where causes for these symptoms can be found.

Therefore, every time the BPS brigade declares that pwME, pwLC, and people with other diseases have comorbid psychiatric conditions, all of us should tease out what they mean by this, and ask if is this an accurate and fair depecition of a given individual or group.

I will include a link re a list of "psychosomatic conditions" later.

ETA: added "and ask if"; "and people with"

 

NHS England undercurrent here re ME IBS etc, consolidated by recent appointment of Wessley....
There will be no hope to counter this on a local level if this is what's being issued from the too.

NHSE & Royal Academy of Medicine all at Roundtable for NICE will have their way and will 'transform' & direct Long Term Conditions along this pathway.....

I am witnessing this locally as we speak.

https://www.nhs.uk/conditions/medically-unexplained-symptoms/
Just checked the date of this - issued just before NICE publication...
Page last reviewed: 12 July 2021
Next review due: 12 July 2024

 

Thanks very much, @Suffolkres.

But, wow, this NHS article should be corrected, or scrapped now! How out of date info does linger!

This also seems to demonstrate the silo syndrome. Right hand not knowing what left hand is doing etc.

 

This is terrible!

 

Ignored Ramsay's and Acheson's findings.

The authors advise the psychological perspective of ME has almost disappeared.

Wow, that's been the majority view with research money thrown at it for decades.

 

The BPS doctors worrying about being a minority is a very encouraging sign. They're seeing the writing on the wall. Biomedical ME & LC research is getting far more attention than BPS, and current guidance is strongly skewed towards biomedical. BPS treatments are still common in clinical practice but that will inevitably change.

 

perfect

 

Given my recent interactions as an ME patient with the neurology department at the AKH Wien (Vienna General Hospital), I'm not surprised to read that several authors of this article are in positions of authority within that department.

This article provides us with yet another example of unsound medical reasoning regarding ME:
1) "neither clear pathophysiologically causal nor therapeutic evidence-based results on ME/CFS have been identified in the many years of scientific research"

2) The authors then jump immediately to the fact that many ME patients also experience mental health issues

3) They assume that correlation (many of us struggle with mental health issues) implies causation (other symptoms must be a result of these mental health issues).

Rather, a more rational line of argument would be:
1) It's no wonder we do not yet fully understand the underlying mechanisms, given how underfunded ME research has been until very recently.

2) Most people living with ME have experienced decades/lifetimes of medical trauma, poverty and isolation. Most do not have the resources to access the basic necessities of life, let alone the mental health care needed to withstand these conditions. This lack of access exacerbates the psychological effects of living with severe chronic illness. Many are also undiagnosed or underdiagnosed, meaning they live with debilitating symptoms but are told repeatedly by doctors that there is nothing wrong with them. This kind of medical gaslighting can cause severe mental health issues.

3) If we want to collect useful data in order to find the underlying mechanisms for ME, we need to first ensure that patients' basic existential needs are met. Providing long-term, stable access to safe and clean housing, food, water, primary and mental health care will allow people living with ME to clearly report their symptoms to clinicians and medical researchers. For instance, someone living in stable circumstances will be able to distinguish between an episode of an elevated heart rate due to anxiety (e.g from not being able to work, pay rent, or socialize) from the elevated heart rate that results purely from POTS or MCAS symptoms. These detailed distinctions simply cannot be noted or reported when a patient's basic existential needs are not being met.

Beyond the broad, systemic errors in reasoning outlined above, there are several other issues with the conclusions reached in this paper. I'll continue working on analyzing these now in small doses, as I'm able. If any other German speakers want to collaborate on this analysis I'd welcome input.

In the long term my hope is that, through the tireless work of the Tempi Stiftung and others, we'll be able to have a calm and measured dialogue with these authors in order to help them understand the errors in their reasoning. Given the positions of authority these authors hold, if left unchecked this publication could have a lasting negative impact on ME patients in Austria at a clinical level for decades to come.

 

The myth that there is a lot of psychiatric comorbidity comes from Wessely's early belief that ME is a type of depression. He achieved this by using questionnaires that have fatigue and sleep issues among others as symptoms of depression. They were also very careful never to use chronically ill controls.

In fact one paper showed that people with ME were more likely to assume that symptoms were caused by physical processes than a control group of attendees at Accident and Emergency department on a Saturday night (!) They explicitly stated that they did not use controls with rheumatoid arthritis of MS because people with long term physical illness assumed symptoms were more likely to be physical

It is just not true that we have abnormal amounts of psychological problems. We are more likely to be frustrated and angry than have clinical depression.

They mischaracterise ME from the epidemics. It was usually found alongside polio and in the Adelaide outbreak the infection could be passed on to primates. There has never been a study to see how flabby muscles are in ME. Behan did research looking at mitochondria in athletes who could only manage to run 5 miles instead of the ten or more that was usual for them.

Ignorance and bigotry are a terrible combination. If they have dome any proper literature search it should be obvious that we have had 40 years of papers about CBT and GET yet the ones from last year were still saying that results were promising but more research was needed. I would not mind so much if these people argued with an open mind but distorting facts is infuriating.

 

Exactly, Sean. The resilience required to survive the isolation of the severely affected should be studied by NASA for Mars exploration!

As a patient group we epitomise the human spirit to survive.

 

Mental health experts kept whining that people being "locked down" was horrible for their mental health. And yet many of us have been actually locked down for years, all the fault of mental health professionals, and have excellent mental health considering the endless insults to injury and resulting ostracization. Building an entire profession on speculation, pseudoscience and myths is a terrible, awful, no good idea.

 

Yes @ContraindiKate.

Absolutely all of your argument, too true.

The dominant ideologies and material interest's of the wealthiest and their preferred economic political model, make it almost impossible to access adequate physiological or psychological care for the majority of people across the globe. People with M.E diagnosis comprise a tiny percentage of this total. We just happen to be a rather unpopular percentage.

The medical establishments exclusion of us is not contained to them. They don’t judge our symptoms worthy of investigation or care. They ensure that the rest of our society follows their lead. For they are classed as experts. They have influence and power and the wield it against us. They are keen to publicly proclaim or explain how defective we patients are, in outlook and character.

So we are denied community shelter and support also.

This is inevitably traumatic.

 

"Possibly for reasons of stigmatization of psychiatric disorders, the psychosomatic perspective (an obvious one in the absence of objectifiability of symptoms) has almost completely disappeared from the scientific and media discourse on ME/CFS. " ​

In the original:

"Möglicherweise aus Gründen der Stigmatisierung psychiatrischer Erkrankungen, ist die psychosomatische Perspektive (eine naheliegende bei fehlender Objektivierbarkeit der Symptome) fast komplett aus dem wissenschaftlichen und medialen Diskurs über ME/CFS verschwunden."
​

At the end of the section "Klinische Betrachtungen" (Clinical considerations), the authors refer to a review article in which the causal research approaches to the pathogenesis of ME/CFS have been categorized and compared. Here is a graphical comparison of the results.: https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-020-02665-6/figures/4

As can easily be seen, the gap in the last time period considered, between studies with an immunological starting hypothesis and those with a psychological explanatory approach, has actually increased slightly in favor of the immunological approach. Only this does not change the second place of the psychological approach.

This contradiction is probably less significant compared to other inaccuracies, omissions, and tendentious statements of this paper, but it is so obvious that I absolutely cannot understand how such contributions make it into the publication at all.

​

 

BPS researchers are bringing this up again?! I'm starting to feel like I'm reading a Reddit thread about politics, where people keep using the same canned arguments over and over.