Psychiatric disorders and the onset of self-reported fibromyalgia and chronic fatigue syndrome: The lifelines cohort study 2023 Creed

[Wyva]

Same here, as for getting an official diagnosis. Here the WHO's ICD is used for giving diagnoses, so you are supposed to be diagnosed with post-viral fatigue syndrome. It is extremely rare to find a doctor who even knows this. I also haven't met any doctor who had any idea what I was talking about when I talked about my symptoms and the sudden post-viral onset. An endocrinologist at Semmelweis University had some faint idea but even he just saw it as chronic fatigue, period. One very old cardiologist wanted to diagnose me with neurasthenia, I think that was the closest I got to an ME or CFS or whatever diagnosis. I totally gave this up after a while, doctors here are really unaware and the vast majority of people really don't have a diagnosis. People frequently join my group to ask where is it possible to actually get one and ask if doctors even exist who know enough about the disease. I don't think we are the only such country.

 

[Three Chord Monty]

Well, it depends on how seriously they are affected, and what they are told by health professionals, and what they themselves believe about such illness. Very roughly, I had 15 years of progressively worsening symptoms before starting to seek help from the NHS, and it took another 10 years of being repeatedly fobbed off, and my symptoms continuing to worsen, before I received an official diagnosis. I would guess that it was only in the last 5 years of that period that I started to guess, and/or admit to myself, that I might have ME/CFS. I can therefore easily understand how there might be a considerable number of people with ME/CFS who are yet to get an official diagnosis.

That's certainly easier to understand. But that's why I made reference to sudden onset, "Ramsay" ME. Due to circumstances (not least of which is that I live in NYC; still an obstacle for some, but for me it undoubtedly made it easier to find a specialist than if I lived in a rural area, or the mountains, or one of the majority of countries where seeking medical attention for ME/CFS would be a significantly more difficult task), I was the recipient of an early CFS diagnosis, and subsequently, quite specifically, ME. Now, of course I'm not interested in the 'I have true ME' stuff or adherence to Hummingbird or anything like that. I do tend to agree with certain observations from people like Byron Hyde, but the importance of distinction between sudden & gradual onset is not something that to me should ever rise to animosity, let alone the invocation of identity politics I saw in so many arguments years ago.

All that said, I suppose there are people who for whatever reason just would never seek medical attention, no matter how severe the problem. I just have a hard time seeing that as common given the intensity of the illness combined with the shock of sudden onset. If my life had been determined by different circumstances, and I'd not had the support from my wife that I have...who's to say. But it's just difficult to imagine that most people wouldn't do everything in their power to at least try to seek medical guidance, even given how difficult the path to a CFS, let alone ME, diagnosis is for most patients.

 

[Wyva]

Medical Xpress: Study starts to unravel stigma around chronic fatigue syndrome

"It revealed the proportion with mental health problems was smaller than might have been expected: there was no evidence of mental health problems in three quarters of the people developing the unexplained disorders.

The findings, in conjunction with previous work published in Frontiers in Psychiatry, suggest that mental health problems play a part in the development of the illness in approximately a quarter of people developing chronic fatigue syndrome or irritable bowel syndrome.

Creed said, "This work provides evidence that for many people, a wide variety of physical and psychological factors are associated with these debilitating conditions."

"These may be other illnesses, such as gastroenteritis, metabolic and thyroid disorders, chronic infections, asthma, allergies, impaired sleep and excessive preoccupation with illness as well as lifestyle issues. stress, anxiety and depressive disorders."

Appreciating this multifactorial pattern, Creed hopes, will enable health professionals to take a more holistic view of medically unexplained disorders, which can cause debilitating and life changing illness.

He added, "Although mental health problems are more common in ME, they only occur in a minority of people early in the course of the illness. The treatment approach should consider a wide range of possible factors just as sound treatment of diabetes and rheumatoid arthritis should include an assessment of mental health as well as the characteristic bodily problems."​

 

[dave30th]

it seems pretty clear to me there is a heavy dose of "that dessicated dualistic thinking" (as a certain Professor White once wrote to me, more or less, in an era when we had a brief exchange) in this emeritus person's musings about CFS, fibro and psychiatric states.

 

[Charles B.]

They didn’t find what they thought, which somehow confirms exactly what they thought. The Jonestown cultists were less myopic.

 

[Sean]

Indeed.

'Psychological factors are not a core feature, therefore they must be taken into account.'



Creed has never been a friend of ME patients. As you can tell by the fact that he insists on using 'chronic fatigue syndrome'.

 

[Arvo]

"This study was performed using data from the Lifelines project, University of Groningen, Netherlands. It was only possible with the help and co-operation of the Lifelines management staff and Judith Rosmalen, Rei Monden, and Klaas Wardenaar of University Medical Center Groningen, who worked on the data for a previous paper.

That would be "Predictors of new onsets of irritable bowel syndrome, chronic fatigue syndrome and fibromyalgia: the lifelines study"


Edited to add: S4ME thread on this paper

 

[rvallee]

Yeah this is basically like how Wessely mentioned that they did a study to check if "chronic fatigue" was depression, found that it wasn't, then continued doing their thing as if nothing matters, clearly aware that this is what most MDs think, because of them, and clearly showing that they don't even trust their own process and evidence, it's only valid if it proves them right, otherwise it's fake news.

Because if we divide the process, it basically goes: it's all in their mind, well we found some evidence that there are some factors that could be framed this way if one chooses, therefore it is all in their mind. It goes from "it's 100%" to "hey, it's at least 1% and that's just the exact same as 100%".