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Just so you know your great work isn't being totally ignored, I'm working my way through it, I'm just a bit slow at the moment

... and manages to mess up the spelling in the process. Should be kahu not kaku. Though perhaps fittingly kaku means (as per Te Aka dictionary): 1. (noun) Pieces stripped off in the process of dressing flax. 2. (noun) Dried leaves or other vegetable refuse, such as that often deposited by a...

Just a few days left to complete the survey, due by Monday 2nd February 2026. Most of the questions have tick box answers but there are some free text options, too It’s not that often one of our patient organisations is having a good look at itself and its roles, at least not publicly. Seeking...

Generally, shorter is better, more effective. If you try to make too many points, anyone just skimming won’t take them in anyway It doesn’t need to be a single message You can have a part that repeats in each message, to create a recognition effect, here maybe the first one or two lines...

Opinion piece in Sundhedspolitisk Tidsskrift: ME-foreningen: Sundhedsstyrelsens direktør vildleder Folketinget ME Association: The Director of the Danish Health Authority Misleads Parliament Norway, Sweden and NICE all get dragged into this Danish nightmare

Comment in Sundhedspolitisk Tidsskrift: When Criticism Is Made Suspicious – About Power and Responsibility in Healthcare Communication The author explains why he formally complained to the Aarhus Functional Disorders Centre

That would be NZ forum members I think ETA: you don’t need to be an ANZMES member to fill in the survey, just a Kiwi affected by ME/CFS

For Kiwis ANZMES is seeking feedback from members and non-members on past/current performance and future direction Link to survey Members have also been sent a paper form as an alternative to the online survey. I haven’t asked but I’m sure ANZMES would be happy to send one to non-member...

For Kiwis ANZMES is seeking feedback from members and non-members on past/current performance and future direction Link to survey Members have also been sent a paper form as an alternative to the online survey. I haven’t asked but I’m sure ANZMES would be happy to send one to non-member...

I’ve been trying to figure out what’s bothering me about the ‘overlapping symptoms/diagnoses/comorbidities’ framing. Generally speaking that is, not just specific to this particular paper - though here it’s highlighted right in the title I think there are 2 issues, both problematic in different...

Has anyone looked at this study again in light of the DecodeMe results?

I’ve emailed the authors and pointed them to this thread

To expand on this The authors appear to have adopted the opposite strategy of more is more. Pile on published finding after published finding, including preliminary or shaky ones, just as long as they seem to support the cause. All, I suspect, in the desperate hope that this results in the...

That is concerning. Even if the journal is actually better than it sounds here, if that’s the perception people have of it, papers published there will be seen as lacking credibility, irrespective of quality

To answer the question in the title: No I fluctuate between feeling like I’m coming down with a cold on a good day and feeling completely wiped out by a full-blown flu during PEM (minus the cough & snot & actual high fever though weirdly still feeling very feverish) Both include a level of...

That’s interesting I’ve been wondering whether the ‘poisoned’ vs ‘flu-like/coming down with a virus’ descriptions are attempts to describe the same kind of awful or different kinds of awful. Your experience would suggest the latter Those of you who have experienced both, are you able to...

Sometimes less is more. If they had limited themselves to sections 5 and 6, that could have made for a useful paper. As it stands I fear it is unhelpful 5. Current barriers to health services, employment, and social services 6. An Aotearoa New Zealand case study: inadequacies and inequities in...

This study (on a completely different topic, S4ME thread) recorded ‘alcohol drinker status’ - % of current, never & previous drinkers - in an ME/CFS cohort of n=875 compared to UK Biobank healthy controls (table 1) Unless I missed it it doesn’t record the amount of alcohol consumed, i.e. light...

Mona Jeffreys writes on Newsroom on LC (with mention of ME/CFS). Finishes with:

Grant recipients Mona Jeffreys and Kahu Dey speak on food insecurity and access for people with ME/CFS & on feasibility of establishing a registry (registry part starts 28:23)