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ANZMES petition to NZ government: Fairness for the Hospitalised: Stop Benefit Cuts After 13 Weeks https://our.actionstation.org.nz/petitions/fairness-for-the-hospitalised-stop-benefit-cuts-after-13-weeks

That's one of the really curly ones For now I think this is still a case of 'we know people experience symptom exacerbation after these types of exertion/exposure but we don't know if this is due to the same pathology that drives PEM after physical exertion' A popular explanation for symptom...

I've obtained a PDF with all the survey questions but have been asked not share the document as they don't have the capacity to process a whole lot of paper submissions So just summarising here the questions I didn't get to see responding to the online survey as a patient (see post 38 for those...

Fortunately it looks like Trish is a champion jelly nailer (I've just started reading her draft for the PEM leaflet, members only section)

I agree that PESE and PEM are being used synonymously and that we're stuck with that PEM, and now PESE, have always been described as being able to have either immediate or delayed onset. With our current knowledge that's probably the best we can do But there's also long been debate about what...

Donation page for Prof Tate's team has been updated with their 2025 projects https://alumni.otago.ac.nz/donate/myalgic-encephalomyelitis

[continued] But clearly we also experience other time courses of post-exertional symptom exacerbation. Some may actually be hidden delayed PEM because IRL who can tell if their current crash is due to what they just did, or did 6 hours ago, or yesterday, or two days ago, or a combination of 12...

[continued] Keeping the distinction for now also makes practical sense One, it can be helpful in diagnosis and in creating more homogeneous research cohorts, helpful in the sense that the presence of delayed PEM is strongly supportive of an ME diagnosis whereas absence of observable delayed...

[continued] I think it's worth keeping in mind that historically the reason for the emphasis on delayed PEM was not to describe every type of symptom exacerbation we experience but to highlight the one factor that is a) observably different from normal, healthy post-exertional symptom...

I've only been able to randomly read one or two posts per page, to get a general flavour of the discussion. My main impression is that people are trying to make the term PEM do two different things. One is to describe all types of post-exertional symptom exacerbation. The other is to zoom in to...

Thanks Simone Just for the record, my email to me_cfs@... (as guessed by Nightsong) didn't bounce but still no reply

Good detective work. No reply yet but at least the email didn't bounce

I'm getting an address not found delivery failure message for the email contact listed on the survey website (copy-pasted twice and sent from two separate email accounts, same problem with both, not a typo issue on my side). There's also a contact phone number listed but I leave that to the...

I suspect some of the 'missing topics' are addressed in the questions that weren't presented to me as a patient. Had I identified as a researcher instead - you're not allowed to choose multiple identities - I probably would have been presented with questions about "areas for research where the...

I filled it in as an individual 'international' respondent. In answer to question two I stated that Australian guidelines matter to me as a New Zealander because they'll influence medical practice in NZ Here are all the questions I was presented with, as @Utsikt says they don't cover all the...

Must have missed this paper earlier It's a survey so has all the usual issues inherent in surveys but it's a large one so the absolute figures are still interesting and support previous surveys' results of GET/CBT/LP being associated with significantly more harm than good An interesting...

Could a registry be a vehicle for collecting reports of harm following specific interventions? I'm not sure it's particularly helpful at this stage to ask people about everything they believe helped or harmed, that would just create an unmanageable cacophony of noise. But maybe something more...

One problem with a registry looking at natural disease course is continuity of funding. Well, it's a problem for any sort of registry but even more so for one specifically looking at long-term outcomes. In NZ you'd have to be extraordinarily lucky to secure 5 years, 3 years is probably more...

These would be useful things to study. Recruitment bias would preclude quantitative interpretations but it would still deepen our understanding of the range and nature of disease courses experienced, a worthwhile undertaking even if we can't put nice % figures beside them A new registry could...

I've just learned about this preliminary study getting underway in NZ: Determining a minimum dataset for a proposed ME/CFS Registry It would be good if we could feed them some ideas, starting with answers to the questions in the previous post...