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I wrote this primer last year, outlining the flaws in the GET research and explaining why GET is likely to be harmful for people with ME/CFS. It is specifically targeted towards health professionals and disability assessors, to give them a summary of the issues with the GET research. The primer...

Thanks, Trish. I’ve not posted the primer here yet, and I’m not really sure where it should go. Suggestions?

I wrote this primer which I can send her. It summarises the flaws in the GET literature, but also includes a section (section 6) at the end about how it’s being misused here (as well as some patient quotes)...

Is it worth sending a response about how PACE has been used (& misused) here in Australia?

The bit that always gets me is the fact that, supposedly, we are Type A/overachiever personalities who, following some infection or other, had a total personality shift such that now we are activity avoiders who are too scared to do anything, despite sometimes decades of life previously spent...

Eleanor Stein’s Clinical Guidelines for Psychiatrists is excellent. It’s a shame it’s not more widely known and utilised. I emailed her late last year, to ask her if she had any plans to update it, so it could incorporate some of the more recent evidence. Sadly, she doesn’t.

Thank you to @Simon M for initiating this discussion, and for everyone involved in the poll and submission. It's really wonderful to see this forum being utilised in this way.

An excellent critique of the CDQ. Thank you to everyone who participated!

That jumped out at me too. What would cause such a delay between submission and acceptance? It's interesting to reflect on how much things have moved on since this paper was submitted. No doubt it would have had more impact had it been published a year ago. Now it feels a bit like something...

Shared on #MEAction Network Australia's social media accounts, and to Australian FB groups.

Thanks for setting this up, @Simon M. Will there also be a written submission collating the nuances of this discussion to feedback to NIH/CDC?

Done! Thank you to everyone involved!

I agree. This is a huge issue (not just for NICE, but everywhere). It is a major obstacle to getting GET/CBT recommendations removed. That's interesting. What makes you think this? My sense is the opposite, that many pwME/CFS have POTS (diagnosed or undiagnosed). In terms of the previous point...

I agree that a change in HR is a useful measure for PEM, and perhaps the only objective measure we have right now, so it would be beneficial for it to be included. However, PEM can be accompanied by either an increase or decrease in HR. I think it's important to capture the significance of a...

My brain read this as "postmodern studies" and went down a whole track of wondering what that might look like in biomedical ME/CFS research before another little voice in my head suggested it might be worth rereading the sentence. *sigh* Brainfog, thou art not my friend. Thank goodness for the...

Chronic Fatigue and Immune Deficiency Syndrome (CFIDS), cellular metabolism, and ionizing radiation: A review of contemporary scientific literature and suggested directions for future research. Authors: Rusin, Seymour & Mothersill. Abstract PURPOSE: To investigate biochemical pathways known...

Yes, not much effort expended.

I agree. It's good that this fact sheet doesn't emphasise the need for exercise, pushing through, or challenging false illness beliefs, but there isn't enough emphasis on the importance of rest and pacing, and it doesn't convey how severely unwell some may be (ie: attending school may be out of...

And now they want to teach other researchers how to do the same! :banghead:

I noticed that too. Given that the page was updated on Dec, it's unclear whether there is more to come, or whether the Dec 15 update was the new content referred to, and whoever updated the page just forgot to remove that sentence. I'm inclined to think it's the latter.