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This is why I made the comment about the Frontiers journals a few weeks back. A lot of ME/CFS studies end up there, and I don't think it's a good thing.

Merged thread Once again on B12 / folate... :banghead: When I browse the symptoms of B12 and/or folate deficiency I see things I have suffered with for years. Tinnitus, palpatations, tongue inflammation, etc. Now I know these overlap with ME symptoms, but I want to try supplementation and see...

Yep, I think we have experienced the same thing!

not sure on adrenaline, but the sleep studies have been pretty inconclusive.

this PALS address is one of the three I have sent to

A note that the address Cfs-Meliverpool@nhs.net which I obtained from the referral letter posted on the service's website, doesn't seem to exist now. I'm still not sure the letter has been sent to the most appropriate addresses...

Folks, This has angered me. RE the 'Although there is no disease...' statement, there is no excuse for this. I have drafted a letter to the Liverpool CFS Service and the trust's Patient Advice and Liason Service. It can be found here...

Just seen this leaflet. What a fucking mess, regardless of the truly shocking 'there is no disease' statement. Leaflet somehow acknowledges PEM and advocates for pacing, yet the Liverpool CFS service claims to follow NICE guidelines. Absolute shit show. An incoherent mess, all washed down with...

Author clarification to paper: https://www.bmj.com/content/363/bmj.k4583/rr-18 I wonder how often this stuff goes on in trials...

*Trying to embed tweet in post - may or may not work! <blockquote class="twitter-tweet" data-lang="en"><p lang="en" dir="ltr">More developments from that low-carb study a few weeks back: The authors are now saying they had 2/3 of the data (on 50 percent of the study participants) before making...

Thanks for suggestions. I have used flux in the past and my laptop automatically adjusts the light depending on the time of day. This isn't just a laptop thing - it's there all the time. Just worse when trying to work at a computer. *screams*

The neuro symptoms that started last year are still driving me nuts. The vision issues I've been having (floaters, after-images, problems focusing) are there almost all the time. But things get much worse when I'm on the computer. I think my brain is just struggling to take in all the...

Do not show this to the #ME4ICC lot, they will lose their shit.

Maybe worth a letter of support for a move to a new group, just to nudge them on their way....

This is a great piece and we should be greatful that Joseph has told his story. Note for those who can't access the story, this article was published in a similar form on Medium several months ago.

Yeah I agree. Perhaps her post raises some good points. But it was the tone of the post and some of the comments, and the constant effort by some in the community to shit on the work of leading researchers, charities, advocacy groups etc.

There's a post going round on Facebook from a Maryann Spurgin basically ripping into this work, and in her post she seems to claim that Ron may have got the idea for this study from her blog in the 80s! (Though I do know this is not a new idea). Her post is being shared by some of those that...

It's nice to see an article in a top-tier journal. I'm not a journal snob, but I'm not a fan of the amount of ME/CFS papers in the 'Frontiers' journals...

I feel we must take some action on this now, or at least when the final panel is released. This has made me really pissed off. My view is that a co-signed letter would be the best action, led by someone with authority. I don't know if anyone has plans for this.... I have just seen the letter...

https://www.sciencemag.org/news/2018/09/your-gut-directly-connected-your-brain-newly-discovered-neuron-circuit The human gut is lined with more than 100 million nerve cells—it’s practically a brain unto itself. And indeed, the gut actually talks to the brain, releasing hormones into the...