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Getting good photos is a challenge, for sure. That's partly what prompted our interest in images: our experience trying to find photos for our new website (https://mecfssa.org.au/) One thing that has really helped is the improved quality of the cameras built into smart phones. People's home...

I have been severe in the past. The reason there are three of us as a team from ME/CFS Australia is that I am still mostly bedbound and have limited capacity. I do my advocacy work as part of a team with Penelope Del Fante, who has been very severely ill in the past, and is currently mostly...

It's available as a PDF via Xavier's website: https://www.xaviergimeno.net/files/CFS_symbolic_violence_1en.pdf

I have Ulcerative Colitis and when that is flaring, I have massive, debilitating fatigue. It is nothing like ME 'fatigue' at all. It's a pure fatigue, not complicated by other symptoms. In fact, when I do nothing because of my UC fatigue, my ME symptoms reduce, due to the extra resting. So on a...

I have been involved in a Cochrane review that was rejected and will be published outside Cochrane. It is certainly possible to use the structure of a Cochrane review and publish independently.

I agree with those who describe the paper as incoherent and appearing to have been written to support a pre-existing theory. (Maybe I just agree that it was not clearly written because I found it hard to follow, but I do suspect that my failure to follow the line of argument wasn't entirely due...

I am a little lost here. Is there any information on differences between the two groups other than the muscle membrane excitability grouping? Some ME studies have indicated that differences found tended to correlate with length of illness or with comorbid fibromyalgia or some other identifiable...

I can't claim to understand the software they used, but if you simply look at the data points, there is a rough alignment with the direction of the solid lines. There are plenty of data points outside the 95% confidence dashed lines, but the bottom left and top right corners of the plots are...

It is worrying that the "placebo" was not recognised as a treatment. Many people with ME report significant relief from saline infusions. The study appears to have made no allowance for the treatment effect of the so-called placebo? That does not detract from the tremendous integrity...

Yes, I get the same PEM as if I had struggled to do whatever I have done, in terms of when it hits, how severe the PEM is, and how long it takes to resolve. So yesterday I made the same mistake, too much standing around at an event instead of always sitting with my feet up (I carry a footstool...

Placebo in other conditions has been carried out by placing the clip on the ear lobe rather than the tragus, which assumes that the trial participant is unaware of correct clip placement. As TVNS becomes better known, this placebo approach may no longer be workable, which will complicate...

Not that I am aware of. The problem, as far as I can tell from the web, it that both Nemos and Vitos are preset for specifically epilepsy and migraine. They are at 25Hz and 1Hz. We are using 20Hz. With the Parasym, I can use a variety of settings. For example, the tinnitus setting is very...

It's worth noting that the Parasym is not available everywhere. So it will be helpful if the TENS approach can be sorted out. In the UK you can only get a Parasym with a prescription, which I doubt includes use for ME. The price structure for a prescribed Parasym in the UK is different, too. And...

Regardless of the hypothesis, those of us using TVNS love it. I have just had a phone call from someone wanting help to set up her new device, after dropping her original one down the loo. She was very keen to describe to me those symptoms that had become worse again during her two weeks...

Thanks for that. I have emailed Katlyn. Many of us with ME have POTS and I have certainly noticed changes since using the Parasym. My heart rate escalates more slowly and my safe upright time is longer. It is extremely unlikely that they plan to trial the three hours a day that I have found to...

We have yet to get a researcher interested in supervising a formal trial. We are working on it! In the meantime, our experiences should be very useful in study design, as researchers need to select settings and doses for trial.

It's a personal anecdote. Right now, the increasingly large group of local people who are experimenting with TVNS (Transcutaneous Vagus Nerve Stimulation) are working on use of TENS machines for the same purpose, at a hugely smaller cost. It is a pitch for TVNS, not for the Parasym. There are...

It was wonderful to identify the impact of the patient submissions. One of my friends was able to quickly identify a sentence that she proposed, which was pulled out of those 250 submissions!

Please, when a member of the Committee, who has had ongoing access to confidential information about the Report process and the work done before the Report's release, says a fact is exactly that, a fact, you might consider that she knows what she's talking about. Fact: There have been two...

Thanks! I have asked our web person to take the article down. He has been very unwell and it may take a day or two.