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Shane Reti was the Health Minister, he has been replaced today. Shane Reti, a doctor, was no friend of people with ME/CFS, I've mentioned a couple of things about him before. The new Health Minister (same government) is Simeon Brown. He has a reputation for getting things done, hence his...

:) I say again, to do this work.

Well done on getting this lecturer interested in ME/CFS. I don't think she would have asked you if she didn't think that you could help the students have a meaningful research experience. Of course, you are best placed to know if you are well enough to do it, but I don't think you should be...

This sounds like a great initiative from the lecturer. If you Lidia or anyone took up the invitation, I'm sure members here would be pleased to help with resources if you made a thread for the project. Perhaps the students in the team might even want to join the discussion in the thread.

Thanks @forestglip for that very useful summary of the webinar. Regarding that Long Covid study of risk taking in a contrived setting, there are a number of explanations that make more sense than people with Long Covid having some inherent personality flaw. It could be that the people with...

And how do you answer those questions when your child is now ill? Perhaps the child was a joyful energetic social young person before becoming ill. And now they are slumped in their bed, refusing to go to school, often feeling upset and complaining about aches and pains and feeling exhausted...

I've made a thread to look more closely at the second survey there: Behaviour Assessment System for Children, BASC - a discussion It has questions that assess, among other things, somatisation and withdrawal. Chris, @MelbME, can you tell us what is your team doing to ensure that this survey is...

Behavior Assessment System for Children, Parent Rating Scales (BASC- PRS) is being used by a current study investigating omics in young people with ME/CFS. I thought it would be useful to have a closer look at it. It is a 173 item survey that parents fill out about their child. It costs over...

@MelbME, I wonder if your team has really thought carefully about why they need to do those surveys I listed above in a project that is tracking omics? If you want to track mood or cognitive ability against levels of various molecules, why not just ask the young person and their parent that...

From another thread: So half of the Dunedin study cohort (over 1000 people) would have qualified as having MDD at one of the time points that they were assessed at. Presumably, if the assessments had been annually, rather than 5 yearly, an even bigger percentage of the cohort would have...

This study of young people is using HADS Serial Paediatrics Omics Tracking in [ME] (SPOT-ME): protocol paper for a multidisciplinary, observational study..., 2024, Armstrong+ It is justified with the following: Reference 41 is White D, Leach C, Sims R, et al. Validation of the Hospital...

@MelbME, did you have any comments on the lack of evidence for cortisol being a problem in ME/CFS? I think the plain language summary rather glosses over the significant use of surveys to gather information about the psychological status of the young people in this project. We've said it...

In that case, IGHV3-30 usage didn't seem to make a difference to the severity of the leukaemia disease, but some other IGHV3s did, one being associated with worse outcomes and one with better outcomes.

@Sasha, we did put out informal feelers to Sonya about a closer association with AfME and/or WMEA, and we got the message that AfME is not interested. They seem happy that we are doing our thing, they aren't opposed to us. My impression of what was reported back was that they just don't see a...

A long shot, but I wonder if higher levels of IGHV3-30 could actually be protective for people with ME/CFS? That is, the tendency to select IGHV3-30 might help reduce the ME/CFS problem somehow, and so people currently without that tendency have worse ME/CFS. It certainly will be interesting...

I do think it is well-meant, but they certainly have not looked critically at the papers they cite. I expect they were required to do a literature review first, as is common in a PhD. So, I understand why they did what they did. But maybe it is time that things were done differently...

Nice analysis @Arvo That Knudsen paper rang bells. We actually have quite an extensive analysis of it here: Comparison of chronic fatigue syndrome/myalgic encephalopathy with other disorders: an observational study by Knudsen et al. 2012 Needless to say, we did not find it produced evidence...

The paper seems to get more assured and more useful as it goes on, as it gets into the actual tools and how they have been applied rather than talking about ME/CFS. I feel as though I'm getting to the good bits, but sadly am running out of steam to finish reading it right now. I agree with...

From the discussion: They suggest others have found evidence of what they describe as neuroinflammation (glial activation) They tried hard to think of explanations for the finding that more TSPO was related to better cognitive performance in the PASC group, suggesting that the glial...

Here's Figure 2. Top two rows are the PASC group; bottom two are the controls. Red indicates more radioactive ligand binding to the TSPO. As I said, there look to be real differences that differentiate the two groups but I've only skimmed the paper quickly and haven't understood all of it. I...