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I think if they were interested in somatisation then they would have suggested one of the many somatisation scales? The somatisation believers suggest that 5-7% of all people have somatisation disorders at some point. There's many more extensive "tests" for it. It's a different reality out...

I don't see the reports, I just get to see the data from the scales eventually. I can ask next time we meet though.

I don't know this history but that doesn't reflect on the management of the current trial we are conducting. I do think people learn as well. Researchers and patients are all learning about this disease. I think it's promising to neuropsych researchers move towards a biological context for the...

I think I already answered this at the beginning but I can clarify some things around the report that I miscommunicated earlier. The BASC is a scale used in all manner of research on paediatric patients: cancer, stroke, etc. It wasn't targeted for ME/CFS, it was just used as a standardized...

That would be unfortunate indeed and I still feel they aren't harmful researchers. They see it as a physical illness, that's why they publish on cognition and MRI. They are also aware that having a disease with little answer or help comes with a layer of stressors that they can help with. If...

Yes, at least a version of it. It seemed like a typical broad set of questions you see on scales looking to assess mood and behavior. I think the interpretation for any of these answers to mean something serious is a problem though. It's a tool that can do damage in the wrong hands but can be...

Yes we work with Sarah Knight and they are experienced with using these surveys. They publish on MRI work and not on these surveys, my impression is that they don't think the disease is somatization, they think it's to do with neural structures, at least that's their main interest. The...

No I I think I misrepresented that. A report is made from neurocognitive testing that includes the BASC, the report goes to the parent. The parent then has the option to provide this to their GP. So it's not a direct transfer to the GP, I realize I miswrote that in a reply to @Hutan who was...

Well the ME/CFS cohort is wildly variable. Different triggers, different symptoms, different severities, different co- morbidities, different order of symptom severities. It's defined by broad symptoms and by exclusion of other diseases that explain those symptoms. I have heard from clinicians...

We as a team are responsible for overseeing the project that it's sticks to the ethically approved protocol, the neuropsychs are responsible for the patients they speak to as part of the study. I'm not sure if we can share the documents without ethical clearance but can look into it. I will...

FUNCAP was not published at the time we began recruiting for this study unfortunately. Would have liked that to be part of this, it's in all our more recently started projects. We typically look for best available scales. At the time the best for ME specifically was the DSQ.

Yes that's about right. The plan is that omics work will be published independently. There is potential to combine for a later paper if someone has the interest/time. The project recruitment itself was delayed considerably by COVID lockdowns, timeline is blown out.

"Complex" term I'm using is intended to be short for complicated, multiple factors and heterogenous.

Yes the participants and guardians are provided with the full information of what will be performed during the study prior to their consent.and they can withdraw whenever they want, they could withdraw their data now if they wanted and we would delete it all.

Yes it could have been done on adults but we felt there was little biological research on pediatrics, felt it was a section of the community being under served and wanted to improve that. That was the goal of the NHMRC grant we got.

I myself have been assessed by HADS a couple times, it never led to a diagnosis of anything. I do find it troubling that others have found different experiences. From clinician I speak to a survey might be one small part of a diagnosis, maybe even just a screening tool to put someone through a...

That is indeed shocking, to think a few questions could be a diagnosis. The lack of physiological knowledge in this disease has lowered the bar for evidence to be actionable and it's not the only disease like that. I'm not a clinician and I expect their job is very difficult, especially because...

That would be problematic, I haven't had any inkling from the people we work this that they view ME/CFS as a psychopathology, they focus on MRI studies. I don't know the long history but I also know people change their opinion on things with more information. Some of the cases we got through...

Not yet, I will have a look and post on that thread in future.

I guess I would say that information or questions aren't biased, they are just data. People are biased, people interpreting the data can be biased. I think that's what we all don't like, especially when that bias is harmful and the person with that bias rejects feedback like "this made me...