Discussion in 'PsychoSocial ME/CFS Research' started by strategist, Jun 6, 2020.
Methods: A retrospective...
Prospective, or get out of the game.
What gets me about all these papers is you have to search them to find the flaws. At first sight they sound so plausible and using 80,657 patients and 161, 314 controls are enough numbers to be conclusive, but when they get analysed you find the questionnaires are rubbish or the effects were small or everything was tweaked to get the answer they wanted.
Why separate into somatic and visceral syndromes, they don't usually? Was that because the results were too weak if they all went together? Using lots of conditions means you can pick out the ones which have an effect (the Israeli Air Force fallacy). You need to do a prospective study to confirm you have found a genuine connection.
Childhood maltreatment is strongly associated with socioeconomic hardship, which itself has a much stronger association to chronic health problems. Doesn't take a genius to know that. All it would take is reliable records of socioeconomic status. You know, like how in biopsychosocial they pretend to take social elements into account but then, just like biological elements, never actually do and only restrict to the same damn loopy fabricated nonsense of conversion disorder.
This is a sort of cheap attempt at using "big data", they use thousands and thousands of records. Looks impressive, except most of us who have seen our files have found egregious errors in them, they are largely unreliable. I would absolutely not trust the validity of my medical record. It contains factual statements. It also contains many false statements, even fabricated ones. It's a mess.
One of the biggest stepping stones in machine learning and its ability to use big data was the creation of the largest repository of validated images. Can't remember the name, but it was managed by Fei-Fei Li, one of the most well-known AI researchers in the world. It was a painstaking exercise that required to manually validate millions of images, categorize them and label their content. Some of that work has since spurred an actual industry that employs thousands all over the world, where all they do is the manually intensive process of validating data. Because machine learning, as with any other process, cannot function with invalid data.
This, here, is invalid data. No matter how large it is, it is utterly useless without being validated. It is not validated. GIGO. End of story.
So, if I understand what the authors are saying... Some children get poorly treated and abused during childhood by parents or "care" givers and this increases the risk of them having various health problems later in life. The authors have decided that suffering these conditions is a mental health problem they call CSS, thus labelling the sufferers in such a way as to make their chances of getting adequate healthcare a lot worse than it might be already.
I noticed that the authors even drag referred pain into their garbage article too. I've suffered from referred pain myself when suffering from very large ovarian cysts. It is well known by doctors that this can cause referred pain in the shoulders. Fix the ovarian cysts and the referred pain goes away without any CBT or anti-depressants or any other treatment.
I read this article on CSS and was absolutely appalled :
Another thing I'm appalled by is the fact that some of the conditions listed that the authors describe as being related to CSS are often actually fixable. For example, restless leg syndrome is often caused by low levels of iron and/or magnesium. The problem can be fixed and the patients' suffering ended! It doesn't need CBT and anti-depressants.
Interstitial cystitis can be cured in some sufferers if treated properly :
I've read online about some people fixing their TMJ pain with very high doses of methylcobalamin (vitamin B12). I've also read that some people have had surgery to move nerves that were being irritated by the movement of the jaw when eating and talking that was causing TMJ pain.
All this kind of "research" into CSS is just a way of reducing the number of conditions that patients will actually be treated for. How can these researchers write this kind of garbage knowing that they are condemning tens of thousands or hundreds of thousands or even millions of people who are suffering to ridiculous treatment that fixes nothing? It's also why I question why some doctors go to work in the morning. They make little pretence at actually curing people any more in many situations, and the number of conditions they treat gets smaller and smaller every day.
Unfortunately these ideas can impact on the treatment given to people with ME, on Facebook and in patient forums I have read accounts by a number of people in relation to more than one UK specialist ME/CFS service where they are given psychotherapy aimed at resolving childhood traumas as a treatment for their ME.
The people I have come across discussing this refer to the consequent psychological stress of dealing with very emotionally charged therapy encounters, memories or cognitions that trigger PEM, that reduce what they are able to do in daily life and puts them off attending the service. The examples I have read report this approach was presented as a way of treating the ME itself and that participants felt pressurised to accept this approach.
It is profoundly worrying, that in the twenty-first century in the UK, public funds are being used to undertake what is essentially an unproven alternative psychotherapy to treat a medical condition in a way that is likely at least in the short term can worsen that condition. My recollections (from undergraduate psychology many years ago now) are that even within mainstream psychology this approach is in disrepute and the origins of CBT were a direct attempt to find an alternative to this, to provide an approach that directly dealt with the symptoms (though obviously CBT in relation ME can be very confused about its understanding of what the symptoms are) rather than wasting time on delving into the supposed roots of psychological issues.
I agree it is irresponsible for CBT therapists to dig into past trauma when treating pwME or people with pain and other physical symptoms. It is not what the patient signed up for or agreed to, and people trained to do CBT are likely to be clueless about how to do trauma therapy, and can cause a lot of distress and harm.
It is damaging the other way round too. Before I knew what I know now (young and naive!) my GP offered help with a very stressful situation by referring me to psychological services. They did not want to know or discuss the reason I was referred or what was causing me distress, it was all about my physical symptoms. More exercise - I was still active. Kept saying it was OK to admit anxiety - I had a method of coping with stress that worked very well and my physical symptoms were all related to how much I did not my feelings.
All in all I was denied help with my psychological problems by them interfering with physical things I had under control. My reality was continually denied.
It must be worse nowadays.
The study does have an impressive sample size with 80.000 exposed persons. They also looked at confirmed cases of childhood mistreatment (so where there was more evidence of the maltreatment in the medical record). It must have been quite severe maltreatment if doctors noted it in their files.
So it seems that childhood mistreatment leads to an a small (1.5 times) increase in the incidence of having CFS in your medical files.
I wonder if it's possible that simply having some entry about childhood mistreatment in a person's medical records makes it more likely to slap a label of CFS on a person.
Especially as, in the UK, 40%+ are possibly misdiagnossd.
They are counting a wide variety of Read codes as sign of possible or confirmed childhood maltreatment, some of which are ambiguous and could simply indicate presence of illness.
For example they count a doctor recording "Child affected by Munchausen's by proxy" as childhood maltreatment. What might actually be happening is that the child is ill, a doctor expresses concern about Munchausen's by proxy and some time later the child is diagnosed with CFS. My understanding is that in their analysis, this would create an association between childhood maltreatment and CFS when it's just a diagnostic failure.
In my case there was a long delay between signs that something was wrong and actually receiving a diagnosis. My unexplained school absences could easily have been interpreted as possible indicator of child maltreatment, leading to a Read code like "child is cause of concern".
There's also the issue of trying to infer causality from association.
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