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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.

An interesting study. Possibly the study was underpowered to identify any impact of hormone use (specifically female hormones). Note the lack of statistical significance for sex assigned at birth - although again the numbers of people with Long Covid maybe wasn't big enough. There was a trend...

Thank you so much @butter. I think S4ME could be very effective at fundraising, and I too would love to see the combined wisdom of the forum being applied to the choice of ME/CFS research projects. However, the recent kerfuffle in the MEA underscores how important it is that there are good...

What if we had a thread for members to nominate resources they would like to have available, whether that is a guide on 'Pacing', information on 'What is ME/CFS?', even short pieces on 'Are ME/CFS and Long Covid related?', 'Severity levels in ME/CFS'; 'What [dieticians/occupational...

The forum committee, both as a committee and as individuals, has suggested to researchers that we could provide private forums and nominate suitable members to consult with. We haven't had any takers so far. But, I haven't given up hope that we might yet be able to do something like that...

Some of us in the S4ME committee have been thinking about creating a website with the forum embedded in it, with pages for resources, things like exemplar patient information and links to good quality advocacy materials. The idea would be that this information, (updated as necessary, translated...

An off-topic discussion has been moved to a new thread: How can we improve the quality of ME/CFS research and clinical care?

I have finally read the paper and I want to have one more go at defending the authors. There is good intent here and also a lot of good content. I think it is a helpful document. I know @Sean that you weren't saying this paper is infantilising and insulting, but instead that...

Comparison of Clinical and Pathophysiological Characteristics of ME/CFS and Chronic Fatigue Associated with Post-COVID-19 Syndrome, 2024, RIABKOVA This thesis gives interesting information on the history of ME/CFS in Russia as well as the current situation there for people with ME/CFS and...