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It's pretty good quality data, as far as anything to do with ME/CFS goes. US NHIS data Heart disease CFS I think ME/CFS advocates campaigned to get ME/CFS into the NHIS survey, so their efforts are bearing fruit. Has there been a separate paper on (ME/)CFS prevalence as estimated by this...

Sorry, I nodded off for a while. Back again. I'd formed the impression that SARS-CoV-2 antibody levels weren't different in Long Covid, although interesting that the studies you found @forestglip suggest otherwise. That chart that @forestglip posted, the relationship between GWI score and the...

I haven't read this yet. It sounds interesting, especially the bit about soldiers effectively getting Gulf War Illness but not having been in the Gulf War and not having been exposed to sarin. Both authors are from It's good to see researchers from the US Dept of Veterans Affairs taking GWI...

I think it's a very complicated and less than honest way of avoiding saying 'we don't know'.

:rofl: The poor lambs. It's so hard for these well-paid, well-respected doctors to feel incompetent in the face of 'a great difficulty answering patients when asked about the origin of their suffering'. The answer? An agreement on an unevidenced story to tell, and some group meetings with...

I've searched, not very hard admittedly, but I could find no warning saying to use the BASC survey with care in populations of children with medical conditions.

There are surveys that could be used in ME/CFS instead of the BASC, with its aim of identifying psychopathologies, in order to identify symptoms and mood issues, both for research and for clinical care. You would probably still want to add on questions for ME/CFS specific symptoms and something...

Lower levels of pyruvate than what? Healthy controls of the same age? Healthy controls of the same age and BMI?

@MelbME, @Nightsong has posted copies of the BASC-3 PRS survey on the BASC-3 thread. It is pretty obvious that a child with ME/CFS would score very highly on the somatisation scale, as would any child with a debilitating chronic illness. What has taken me aback a bit is that I recognise some of...

Thanks @Nightsong Yes. Here are some items from BASC-PRS A (A is for adolescent; C is for child) Complains of being sick when nothing is wrong Says "I think I'm sick" Avoids exercise or other physical activity Gets sick Isolates self from other Complains about health Complains of pain...

I don't think that is true. There are still doctors trotting out 'stress' as a cause; I think that has been documented on the forum. There are still doctors pointing to psychosocial causes in multiple sclerosis. People generally love to say that people suffering misfortune have brought it on...

But, we don't know that ME/CFS is complicated, it may be simple, it's just that we don't understand it yet. What specifically is complicated? Wouldn't 'poorly understood' be more accurate if that is what you mean? What multiple factors are involved in ME/CFS? Do you mean factors relating to...

@MelbME, it would be helpful to know if you have overall responsibility for the combined project, and for ensuring the participants and their families are not harmed by the project. If there are in fact two separate projects, who has responsibility for the neuropsych project? It would also be...

Thanks for your replies @MelbME and your obviously good intent.

I found some slides with example items from the BASC-3 PRS. The bullet-pointed items are assessed by the parent, about their child. I think there is a scale to record the degree to which each item is true. Anxiety: The tendency to be nervous, fearful or worried Is fearful Has trouble making...

There is more I could say, but I'll leave you to get on with your family. I hope, once you have had a chance to round up copies the surveys your study participants and their parents are completing and check the participant information sheet, we can come back to the questions in this thread.

Unfortunately, there is no good answer to what happens with the results of the personality/behaviour surveys. If the results, skewed as they will inevitably be and almost certainly over-diagnosing somaticisation and withdrawal, are sent to the young person's GP, the results could greatly affect...

Thank you, I really appreciate you replying here. Let's not get sidetracked by questions about whether people with ME/CFS have a fear of being associated with anxiety or depression; Or indeed whether my son and I had a negative experience with the clinicians. I hope you will have time to get...

As I said, I don't think the ethics committees would have insisted on full surveys being applied - we see sub scales used on their own all the time. But, all this raises the question we have discussed on another thread: 'should studies be being done on children with ME/CFS at this time at...