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A response from the moderation team: This forum was set up with different aims and values from some other social media spaces. Members may share their personal experiences with experimental treatments with the explicit aim of creating discussion from a scientific perspective and allowing...

The article is a bit hard to make complete sense of. Here's Stefani speaking with Oprah about her trauma and fibromyalgia last year. I think it's pretty clear that she attributes her chronic pain to past trauma. Unfortunately, this idea of a link between trauma and fibromyalgia and/or ME/CFS...

It's exactly the same where I am, Mango. The qualifications to be a 'saviour of the ME/CFS community' are low, probably because there are not many people lining up to help us.

That link is to a magazine article that talks about a study on 16 people with back pain. Given that acute pain can cause high cortisol, someone with back pain suffering a flare probably would have higher than normal cortisol. But there are no statistics given for this very small study. There's...

AP, that link you provided does not list pain as a symptom of Cushing's disease. I checked another page on Cushing's, and it too did not suggest that widespread pain was typical of this syndrome that results from too much cortisol (including as a result of long term corticosteroid medication)...

I actually think the paper was worse than useless, because it muddied the waters. It didn't move us closer to understanding if Abilify can help patients. Just like the PACE trial, it combines a lack of blinding with subjective outcomes. If I, a person with ME/CFS who really wants a useful...

Wonderful. I'm so impressed with your work @Adam pwme. You have managed to get across some complicated ideas very well. I hope the video is viewed widely.

I don't understand this - people with long covid at 22 weeks fill out surveys of their symptoms at onset at and at 22 weeks. And it's found that, on average, there has been some improvement. Their experience is compared with people with ME/CFS - who, by definition have had their illness for...

Perhaps if people stopped saying stupid things, we'd be a lot less sad and irritable. It's good to hear that you have a good colleague in the Long Covid advocate.

I guess my reasoning is that if a study done by people who are biased to find a positive effect (allowing problems with dropouts, and lack of blinding with subjective reports), if they can then only find a very limited positive effect, then the treatment probably isn't doing much.

First, I'm pretty sure that no doctor in NZ would prescribe it, so I'd have to get it from a somewhat dodgy source, I'm not even sure if I could legally import it and it might not be good quality. Second, anecdotal evidence is difficult in diseases where well-being fluctuates and where the...

The clinicians at Stanford could have done a decent study for not much more than it cost them to do the useless study that they published. They had patients willing to try Abilify, patients presumably with insurance to pay for the drugs and the clinician time to screen and prescribe - surely...

That's quite funny. I think they are meant to be eaten by cyclists and hard-core hikers with no time to stop. 'All-terrain' in my house is both the bed and the sofa.

I keep a stock of meal replacement bars in the cupboard for times when making a decent meal is too hard. For New Zealanders, the brand I use is OSM (One Square Meal) All-terrain nutrition bar. The bars are formulated to give you one-sixth of all of the recommended daily intakes for an average...

We've moved a number of posts to a new thread in the Lifestyle Management subforum Good nutrition when energy is very low And some more posts have been moved to a new thread about dieticians Can dieticians help with ME/CFS?

I can't access the paper. But I note that the abstract doesn't say anything directly about the treatments lowering reported pain, much less give us any statistics to indicate the strength of the effect. (Not that that would prove anything more than the treatments are effective in changing how...

This study - miRNA in plasma Analysis of previously published data of miRNA in PBMCs: There's overlap between levels in pwME and healthy controls of course, but average levels do seem to be higher and this is consistent in another study. I haven't read the paper yet, but it looks...

That a nice acknowledgements section. It's good to see researchers from Austria and Chile working on ME/CFS biology. J. Blauensteiner Institute of Biomedical Science, Department of Health Studies, FH Joanneum University of Applied Sciences, Graz, Austria R. Bertinat Centro de Microscopía...

This is an example of a wider problem. Proponents of a treatment can do a woefully inadequate piece of research and then claim the treatment is evidence-based. But research that does not provide a fairly reliable answer to a question should not be assumed to provide evidence. Are there not...

When is the deadline for completion?