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NZ research project seeking (anonymous) stories from people who have given up on seeking healthcare due to bad experiences due to biases against race, gender, disability etc (closes 1 August 24). Not ME specific so I don't think it needs its own thread. Just posting in case some members here...

I don't recall any OI symptoms before ME but that was decades ago so memory may not be reliable. However, frequent fainting was the reason I was first taking to the doctor after a bad virus so it must have been a prominent change in my parents' eyes. OI was also one of the only 2 issues that...

Totally agree Are you specifically looking for a scale of right now function? As opposed to how people are feeling symptomwise? I like the FUNCAP and it works well for me for what it's designed for, i.e. it gives a fairly accurate picture of my overall function in part because it smoothes out...

:(:broken_heart: Very sorry your son and you are having such a tough time @Deanne NZ. I have nothing useful to add to what Hutan and SNT Gatchaman have said already. At your son's age it's not overly helpful to be told to just eat, sleep and be patient taking one day at a time for who knows how...

Interesting. What sort of study design and technology would you need to investigate this pinboard hypothesis @Jonathan Edwards ?

Very pleased to see this finally published. I hope lots of researchers use it. Sure, there are a few things I would have cut and sliced or phrased differently but perfect being the enemy of the good and all that. No single instrument is ever going to cover everything for everyone. This is a...

Speaking of... the FUNCAP has just been published. Hopefully that makes it more visible to other researchers resulting in more widespread use For the same reason I think it would be good if you could publish on your combined approach (which looks promising, looking forward to seeing more...

New blog post For any NZ ME history buffs: One of the references mentioned (not for the main paper under discussion but a later one) is "Snow, P. G. (2002). Reminiscences of the chronic fatigue syndrome. New Zealand Family Physician, 29(6), 385–386". The full text can be freely downloaded...

This study has now also been published in English, in the journal Cogent Public Health: The most severely ill patients with ME/CFS in Denmark, 2024, Peter la Cour https://www.tandfonline.com/doi/full/10.1080/27707571.2024.2359958 Open access

After that serious piece of work Tapanui 'Flu is having some fun with this Twitter campaign aimed at John Oliver and Jon Stewart

Tapanui 'Flu is having some fun with this Twitter campaign aimed at John Oliver and Jon Stewart

Don't know if this has been posted already as I can't see the content of linked xtweets. But this thread is worth (re)posting, it's brilliant. Also a contender for most bird puns within a twitter thread which must surely be saying something glossary for non-Kiwis: Tui = female name as well as...

Have only been able to skim this thread but there seem to be 3 layers of discussion going on 1) outsiders' reactions to the illness and diagnosis Very high certainty that the vast majority of the 100 pwME have experienced some form of stigma, gaslighting, symptom minimisation, unhelpful...

The ANZMES annual research grant application period is now open until 31 July 2024. See dedicated thread for details

The ANZMES annual research grant & scholarship 2024 application period is now open; it closes 31 July 2024. Application details at link https://anzmes.org.nz/research-funding-programme/

Kia ora @Tapanui 'Flu Some seriously interesting reading there, both in the blog post and the 40-year-old article 40 looong years and the first thing that comes to mind is... plus ça change, plus c'est la même chose Except that today I would only suspect the writer and proofreader of this...

That seems to me a massive missed opportunity. The dark figure of the undiagnosed is arguably an even bigger source of uncertainty than those diagnosed without meeting the criteria. There must be a way, in a cohort like this one, of identifying potential missed diagnoses in the existing...

Yes. In some twisted way I feel my health is good, despite the ever present, highly unpleasant - understatement - and very limiting ME symptoms. I think it's because I've had ME so long it's just my normal. So when asked about my health I think about all the other common illnesses I don't have...

Speaking of which, this preprint from Canada just came out. Discussed in its own thread but briefly, they looked at self-reported CFS diagnoses (made by a doctor) in a large population study cohort. They asked a random sample of these "probable CFS cases" to fill in additional, more specific...

Has anyone tried tagging an ME prevalence study onto one of those large longitudinal population study cohorts they have in some countries? A proper study, not just counting unreliable official diagnoses but properly assessing people for ME, maybe screening via questionnaire first and then...