Open (Victoria, AU) Study looking for healthy people aged 12-19 years to participant in an adolescent ME/CFS research study.

[Kitty]

I wonder if the psychologists are aware of the harm they've created by trying to treat in such a way that has resulted in ME/CFS patients distrusting CBT and other psychological therapies that would be needed to help anyone with the mental toll of dealing with a chronic disease with so little tools to help them.

I don't know whether some of those deploying CBT really are aware. Many of them will be fairly junior staff who were told that it works, not doctoral candidates who'll ask "Does it? How do we know?".

The ones who developed the therapies seem to be part of a special class of academics. Like the special class of plumbers only available to landlords, who're convinced water goes uphill of its own accord.

It's just unbelievable the amount of damage that was done because a group of people thought they understood the mechanism of the disease with such little research and then developed radical methods instead of just sticking to a method to help resolve secondary mental health consequences.

And couldn't even be bothered to investigate whether there even are any secondary mental health consequences, let alone what approaches are best to treat them.

 

[Milo]

one survey question that is highly suspect for pwME is "have you been abused as a child" It leads to researchers disbelieving the disease. The risk to patients is that the whole study will be focused on character traits and psychological aspects which can easily be magnified by the researcher and interpreted as significant when the behaviour is absolutely common- for instance, being anxious when you see a doctor. IF you have been made to believe that what you have is "all in the head" hell, seeing a new doctor is definitely an anxiety provoking moment.

We as patients have seen and heard it all. We sure do not hope harm done in future studies, particularly when young patients are involved.

 

[MelbME]

one survey question that is highly suspect for pwME is "have you been abused as a child" It leads to researchers disbelieving the disease. The risk to patients is that the whole study will be focused on character traits and psychological aspects which can easily be magnified by the researcher and interpreted as significant when the behaviour is absolutely common- for instance, being anxious when you see a doctor. IF you have been made to believe that what you have is "all in the head" hell, seeing a new doctor is definitely an anxiety provoking moment.

We as patients have seen and heard it all. We sure do not hope harm done in future studies, particularly when young patients are involved.

The childhood trauma question is interesting for biological research too. Developmental changes can happen to many biological systems. All manner of things happen from it as a risk factor to a lot of disease.

But it's also inaccurate because a lot of people can point to traumatic things in their childhood. There is significant bias especially if it's drawn out by someone trying to find it.

Only if there are documented accounts at the time would we use it in biological research.

 

[Milo]

The childhood trauma question is interesting for biological research too. Developmental changes can happen to many biological systems. All manner of things happen from it as a risk factor to a lot of disease.

But it's also inaccurate because a lot of people can point to traumatic things in their childhood. There is significant bias especially if it's drawn out by someone trying to find it.

Only if there are documented accounts at the time would we use it in biological research.

There has been an excessive interest to link ME to childhood trauma, to the point where British psychiatrists have made the rounds around the world and telling doctors that ME was due to childhood trauma. When I got sick and seeking out answers, one internist (specialist in internal medicine) actually asked me and told me that I simply needed to not worry about my symptoms and get back to work.

So this is my bias. Our physicians have been infected with the childhood trauma "thing" over here and have passed it on to new graduate doctors. Being a nurse and having an actual EBV positive test at onset has not made it easier for me. Perhaps worse. It's been 16 years and almost 7 months.

 

[Amw66]

The childhood trauma question is interesting for biological research too. Developmental changes can happen to many biological systems. All manner of things happen from it as a risk factor to a lot of disease.

But it's also inaccurate because a lot of people can point to traumatic things in their childhood. There is significant bias especially if it's drawn out by someone trying to find it.

Only if there are documented accounts at the time would we use it in biological research.

And ACEs scales are very problematic . Missing nuances of age, repetition , power asymmetry etc etc .
James Coyne did a good blog on this