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Moderator note: This post has been copied and following posts moved from this thread: Epidemiological and clinical factors associated with post-exertional malaise severity in patients with ME/CFS. Ghali et al. 2020 ____________________ PEM studies always catch my attention, especially ones...

You couldn't make it up. Google translation of the captions for the non-scandies: 00:00 - 00: 05So we ask them to sign. Right here. Thanks, you won't get it back. 00:05 - 00: 07This is going to be so good! Think positive. You "do" ME. 00:07 - 00:10 "How much does this cost?" Why do you ask...

Don't think this has been posted yet. I found it very informative. Note: I'm pretty sure this talk was recorded before Prusty's paper was published so may not include the very latest results but this video helped me understand Prusty's thinking around HHV6/HHV7, mitochondria and ME much better...

Only did a quick scroll through but found some interesting verbal gymnastics on slide 52 worth being aware of, in a know your enemy sort of way. Fink clearly knows the common patient objections to BDS and is trying to position BDS as a genuine physical problem, not the patients' fault, and a...

Excellent interview. Obviously primarily focused on covid but both Dr Rahman and Ed Yong mentioned the risk of ME being a possible consequence for some, and the need for both covid long-haulers and pwME to be taken seriously. Both were very clear about how little is known. Ed pointed out that...

Made my day! Thanks to all who helped make this happen. :):thumbsup::angel::trophy@:party::balloons::)

That question occured to me, too. I don't understand their reasoning here. Surely if "CFS is a very heterogeneous condition" it makes no sense at all to add a second confounding condition to the mix. Especially when you're looking at BDNF, a factor implicated in the key symptom of pain in that...

This team has previously said that they're aware their cohort is rather small (lack of funding) but that they believe they can still get worthwhile data from it by using methods employed by rare diseases research where you by definition only have a handful of patients. I don't know what those...

Collating all the evidence against the deconditioning idea into a single coherent argument makes sense, maybe a review article on all the available evidence? It will never convince the hardcore believers but may prevent the next generation going down that same blind alley. Ironically the...

Big bravo to all who made this happen. :thumbup: Curious: did the 4 against and 8 abstentions have anything in common, e.g. from the same country? I imagine follow-up is essential and needs to take the form of specific demands. I hope somebody knows how the system works - I don't - and how to...

Much too technical for my understanding but there do seem to be a few interesting points here (IIRC SS31 was the molecule that had the best effect in the "something in the blood" nano-needle tests). SS31 has no effect on mitochondrial function in young, healthy mitochondria, only on old or sick...

Many pwME prefer push & crash to boom & bust. Not immune to misinterpretation either but at least, unlike boom, push signifies an effort beyond what's easy for you if you're healthy and beyond what's safe for you if you have ME. And it's easy to understand.

Updated donation page for Prof Tate's team's research 2020-2021. They do need more money to complete their planned programme. I'm a bit lukewarm on B and C but A sounds interesting. https://alumni.otago.ac.nz/donate/myalgic-encephalomyelitis

Re cognitive testing, there's a whole suite of tests available here: https://www.cambridgebrainsciences.com/science/tasks The individual tasks all have a button saying 'Start here for free' but it doesn't work for me, probably some setting on my computer, so haven't been able to test any.

Plus, it would be very interesting to know what other "plasma/serum-swap" experiments have been done in other diseases, and with what results. What would be good search terms to use to find such studies, if they exist? "Plasma swap" and "serum swap" don't bring up much of interest. Could there...

Found it on iTunes by searching for "foreldrerådet".

Even with my not exactly brilliant ability to follow spoken Swedish, this is a powerful and very moving video. Part of it describes very severe ME - this deserves to be subtitled for a wider audience. The other part is about the failure - refusal may be a better word - of the Swedish health...

Good summary @Hutan. It's available on-demand here: https://www.rnz.co.nz/national/programmes/ninetonoon/audio/2018749885/sarah-ramey-women-with-a-mystery-illness Note that the ME link in the programme notes goes to M.E.Awareness.nz :thumbsup:

Posting with a touch of "survivor's guilt" (or whatever the correct term is for being able to feel safe when so many of you are feeling anything but). NZ has done it!!! We've won the first battle: virus gone :emoji_fingers_crossed::emoji_fingers_crossed::emoji_fingers_crossed: Remaining...

@Anna H, sorry to hear you and your mother are ill. Thought you and the other Swedes here might enjoy this Danish opinion piece. Google translate struggled with the last bit, should be something like 'before the Swedes change direction and rejoin Europe'...