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Their protocol describes what they intend to do with the individual patient data: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42018107473 They are dividing the studies into 3 batches according to what sort of comparitor/control group they had. Then, for each batch of studies...

I have posted a question to the organisation on their website. https://www.onenamecampaign.com/contact I said:

We've been there done that with the inclusive names, and it's a disaster, giving the psychosomatic clinicians excuses to claim it's all the same thing. Conversion disorder, neurasthenia, hysteria, a whole load of initials like MUS, MUPS, SSD, PPS, functional disorder, FND, PIF, ... And then...

It seems to me an idiotic way to go about such a campaign. I can't understand why Solve or MEAction would lend their names to it. Just because something is well intentioned doesn't make it right. I think maybe sometimes people running ME organisations feel they have to support initiatives by...

It's a pity it's being wrapped up in all these superlatives, when actually it sounds like a very interesting and potentially productive way to go about researching the physiological effects of different treatments on pwME.

It's a book chapter, with only the Abstract and Introduction available at the link. From the Introduction: So it seems to be about the technology used to communicate between different medical providers to enable it to be done securely. I'm sure others here will know far more about this than...

And I'm pretty sure it's a false economy. A simple calculation: 8 people in a group that meets for 8 two hour sessions. That's 16 hours contact time for 8 people. I'm sure a much more effective result could be obtained with one or two half hour individual sessions each, and a few 10 minute phone...

A quick web search yielded this: https://quackwatch.org/cases/board/med/campbell/amended_complaint_2009/ “Toxic Mold” Guru (Andrew Campbell. M.D.) Surrenders Medical License Stephen Barrett, M.D. January 24, 2012 Andrew W. Campbell, M.D., as medical director of the Medical Center for Immune...

I hope so. Ovid Amitay really should have consulted widely before thowing Solve's weight behind this.

I think we need to clarify that this is not a SOLVE initiative, it's as far as I can see the initiative of one woman who is also making a film about ME. It looks like she invited Ovid Amitay to be a speaker at her launch, and he says he supports it, but it's not a SOLVE project.

Thread on the series of PEM videos: https://www.s4me.info/threads/videos-on-pem-bateman-horne-center.33627/

Can you explain more what you mean? I don't understand exactly what is being proposed.

As far as I can see it's a one woman campaign which has somehow managed to get Solve to throw their support behind. I've skipped in and out of the video of the event at Santa Barbara. To me it looked pretty small and amateurish. If that was the launch of a big campaign, I'm not impressed, but...

Personalized treatment trials We will partner with a small team of clinicians in Melbourne to recruit 200 patients for this trial.* The plan? Collaborate with clinicians to monitor the biological effects of prescribed treatments. The understanding of successful and unsuccessful treatments will...

Sounds interesting, but what treatment might he be referring to I wonder. I hope they will reveal a lot more information. Whoever wrote the announcement swallowed the superlatives thesaurus. Just in the first couple of paragraphs we have: thrilled, exciting, incredible, unprecedented...

That's appalling. I notice at the bottom it gives a link to how to do an FOI request to Oxford University. Does anyone have the energy to ask them for the chain of correspondence that led to the decision to give the article such unwarranted publicity? Crossposted with Dolphin.

I had completely forgotten we'd tested it before too. We came to the same conclusion then, that it's designed for a computer with mouse, not a touchscreen.

I've been thinking more about this since I commented positively earlier today. I imagined myself being in such a group for 8 two hour sessions spread over 16 weeks having to listen to a bunch of strangers talking about their symptoms and setting goals etc, and having to join in the game, and...

It is horrendous that one man can wield such dangerous power over very sick people and force them into treatment that makes them even sicker. I am so sad to read this is still happening in Denmark.

Agreed. It's probably mainly used in a clinic on the clinic's computer, so they will be able to compare patients as well as track changes in individuals. I think I'll have a go at tracking mine. It would still be potentially useful for ME research, I think, including as part of longitudinal...