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An update: I've followed up again - the reply has been drafted and has gone to senior management for approval. I should get something this week. I'm surprised that it is this difficult to say who qualifies for Whaikaha support.

Change in the methylation of circadian-related genes with HIV infection The authors talk about two different methods of determining methylation - I haven't understood the methods. But they report that the methods can find some different things 'highlighting the necessity of using both...

The issue exposed and unexposed groups potentially being different in much more than just exposure is not a problem in this analysis, where they used pre-exposure/post-exposure PBMC samples: We could do this with pre and post Covid-19 infection samples, for Long Covid and non-Long Covid...

Nine immune cell types Samples of immune cells from 112 donors Donors covered specific known viral, bacterial and chemical exposures Methylomes, methylomics of the DNA in the nucleus of each cell Cell types also differed by exposure group (although the exposure groups probably differed...

If that's true now, or can be in the future, that will be a major advance in environmental medicine. It would be amazing to be able to correlate exposure with illness (along with the underlying inherited genetics).

That is a terrific letter. It's really heartening to see a response like that.

Thanks for posting. It's a small study, but it's certainly not confirming the 'HPA axis' idea that so many people who think these sorts of conditions are a result of emotional stress favour.

The paper claims the following: A. Evidence for frequent HSV-1 and EBV reactivation in both ME/CFS and LC B. Experimental reasoning for cellular damage as a result of herpesvirus dUTPase proteins C. ME/CFS patients have altered autoimmune features , possibly due to the depletion of natural IgM...

Thanks for your post @DMissa. I agree with it, except this point. I don't think we have yet seen good evidence that ME/CFS-like Long Covid is different to ME/CFS. By 'ME/CFS Long Covid', I mean persisting symptoms compliant with a PEM-inclusive ME/CFS diagnostic criteria. Often all sorts...

There's discussion of this work on this thread: Research news from Bhupesh Prusty

It's quite depressing, isn't it? These people think it's fine to dump people in a psychosomatic bucket, seemly oblivious to the enormous harm it causes to the people who come to them for help. And, it's only harm (destroying trust between the patient and their doctors and indeed making...

Thread here: Increased circulating fibronectin, depletion of natural IgM and heightened EBV, HSV-1 reactivation in ME/CFS and long COVID 2023 Liu, Prusty et al

Regarding the funding: I wondered about whether there was a US government funded ME patient registry. There's this one: The Multiple Sclerosis Surveillance Registry: A Novel Interactive Database Within the Veterans Health Administration, 2020 Objective To demonstrate the infrastructure and...

Perhaps coming up with a new definition is a valid thing to do, and certainly enquiring into cultural knowledge of ME/CFS and any traditional treatments is. But, that is not what these authors set out to do. In terms of ensuring that a large proportion of the world's population can more easily...

From @Jacob Richter's link on MS genes: Interesting, and it really underlines how important it is to set up patient registries that track patients over the course of their illness. @Andy or @Chris Ponting, if you have a spare moment, perhaps you could remind us what might happen after the...

Copied post From @Jacob Richter's link on MS genes: Interesting, and it really underlines how important it is to set up patient registries that track patients over the course of their illness. @Andy or @Chris Ponting, if you have a spare moment, perhaps you could remind us what might happen...

Message sent. I've also sent a message about it to the Chair of the New Zealand Ministry of Health Long Covid Advisory Group.

@PhysiosforME, you might find this video useful?

I plan to send emails to the HealthPathways people tomorrow, to get this included as a resource on the ME/CFS pages (Doctor and Allied Health pages). I'll try to get it included in the Long Covid pages too.

We've created a new thread in Resources for this excellent webinar which had input from @Ravn, and moved posts about it to that thread Post-exertional Malaise in ME/CFS - Webinar for Health Professionals