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I think there are a few things we can do relatively easily. 1. A more appealing, accessible entry to the forum, with a website making the resources available 2. good use of search engine magic, to promote our content 3. ongoing liaison with patient charities. Some, a minority to be sure...

Thanks for the link to the San code for research @bicentennial Requiring researchers to front up and share their research with the participants and community prior to publication is one good way to make research better. I agree @Ravn, we need to find ways to do the things you list. I'd love...

For sure @hibiscuswahine, we don't yet know what Dr Rabindranath's views about ME/CFS are, and I am still hopeful. Having a well-informed specialist doctor regularly seeing many people with ME/CFS would be a big deal for New Zealand, and I guess, given how often we have found doctors harbouring...

Inspired by Emerge's announcement of their award for Excellence in Journalism, I wondered what one article you would choose as doing the most to improve the understanding of ME/CFS? I guess there might be a brilliant article that had limited reach, or a pretty good one that was read by a lot of...

That's a great initiative. I wonder what piece of journalism we would pick as the best in 2024 for increasing the understanding and awareness of ME/CFS? Edit: thread here What was the best piece of 2024 journalism for increasing understanding of ME/CFS?

Thanks to Dolphin for noting this on the Australia news thread: https://www.emerge.org.au/the-emerge-australia-awards-for-excellence-in-journalism/ "We are delighted to recognise and honour the exceptional journalists who are dedicated to enhancing media coverage of myalgic...

Not ideal. Dr Vallings has of course been the source of a lot of unevidenced if not outright weird ideas about ME/CFS treatment. That's a good sign though. I've sent an email to Dr Rabindranath, thanking him for his interest in ME/CFS and alerting him to the existence of the forum.

Thanks Peter. I think that's a very good reminder of the range of practical information we have here. Something to keep in mind as we plan a website down the track - we need to highlight that that information is there. I think it is very important that the topic is introduced in a Members...

Hypophosphatasia is a condition with high vitamin B6 levels. Its symptoms overlap with fibromyalgia and, to some extent, ME/CFS. If you have low ALP levels, this paper suggests that it could be worthwhile testing B6 and PEA levels. Could Some Patients With Fibromyalgia Potentially Have...

I think so

We have heard that a journalist is writing a story about the petition, although so far they have only wanted to speak with doctors, and not the petition organisers or patients. Hopefully something good will come of it. We do need to try to interest more journalists in the story. If anyone has...

That's a bit exciting @Deanne NZ, a consultant interested in ME/CFS. He's a nephrologist who is willing to take referrals for ME/CFS patients, he is keen on teleconsultations so it may be possible to see him from anywhere in NZ. Fingers crossed he's ok. I've made a thread for him and his...

https://www.healthpoint.co.nz/private/specialist/dr-kannaiyan-rabindranath/ Nephrologist welcoming referrals for patients with ME/CFS. I think this is the first specialist in New Zealand I have heard of with an interest in ME/CFS. It's not clear what his approach to ME/CFS is. 'multiple...

For sure

Anyway, I came here to evaluate Putrino's recent comment that Long Covid in women is characterised by low testosterone. The findings of this (fairly small) study of ME/CFS do not support that: (I also note that cortisol-related measures are variable and don't support the contention that the...

Milo, you definitely made sense. My objection was to the rigid characterisation of mild ME/CFS people being able to participate in social life, whereas people with moderate and severe disease being unable to because they are homebound and bedbound. There seemed to be an assumption that 'social...

That's as dense a collection of unevidenced statements as I have seen for quite some time, even counting the output of the BPS proponents. I am disappointed (edit - actually, that's too mild. I read that feeling increasingly horrified). If the researchers we are relying on to find answers, no...

Thank you @forestglip for telling us about these software options. We have collectively drafted quite a lot of content on the forum using our existing software, in both public and private areas, for example as part of responses to Guideline processes. What we have done is reserve the first few...

New petition update On Cochrane's excuses for scrapping the replacement review process they set up: Part 1 5 Jan 2025 People following this saga will be aware that, in December 2024, Cochrane abandoned the preparation of a replacement for the flawed 2019 Larun et al review of exercise...

I started quoting all the very bad bits, but got only to the end of the Background in the Abstract and realised that I had quoted pretty much all of it. This is definitely a study for the rubbish bin.