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Maybe it’s cynical of me but perhaps it depends on his target market? Providing a premium service to premium customers who believe in shall we say, unproven technologies.

The Internet Archive (who run the Wayback Machine at web.archive.org) is confusingly different from archive.today (and their other urls like archive.ph) so I don’t think that’s the issue people are experiencing https://en.m.wikipedia.org/wiki/Internet_Archive...

There’s some longstanding archive.today issues with certain DNS providers (particularly cloudflare but maybe others). It’s complicated and involves a disagreement between the two parties but if you’re having issues you could try using alternative DNS servers. A couple of examples...

The big question I’d like to see asked is who takes responsibility for the patient and their ongoing needs? The specialist service? The GP? Having clearer visibility of this would be useful I think. Even if I think we know the answer…

It is going off topic but I may as well join in. As well as covid being ongoing there is a not insignificant number of us with ME who have terrible reactions to the covid vaccines (but not other vaccines). This is a problem in itself as we can’t get vaccinated so are at risk. But it also seems a...

As so often I think @Kitty has put it well. I agree. Pleased with how Sonya responded. We need to find a way for a group to have input rather than it falling on an individual (a bit like some of the suggestions for patient participation in research). I understand this is hard.

Short experience I had with them before AfME took over was while some people initially seemed good they turned out to be completely inflexible. As far as getting advice from a Dr they refused to deviate from the hour long appointments or discuss methods of communication that would work for me...

I don’t want to publicly go into details and I am just one person, but given some relatively recent experiences I’ve had nothing has changed for the better in the NHS specialist service in my area.

A quick and perhaps easy one.. Can AfME put up a prominent “Information for Journalists” page with key facts, figures and messages about ME they want to communicate? This seems to work well for other charities when a journalist needs something to copy and paste, er, research, for a news story...

How do we push the ‘do no harm’ message? To me this is key. There’s lots of people trying to do ’things’ but they are often hijacked or derailed or simply misguided. I feel we almost need to start by not doing things. And by recognising it’s ok to say ‘we don’t know’. A lot of harm is done...

Or perhaps how people who think there was a clear trigger think about or describe that? Or just how quickly he can get 100 of us to answer a question! We’re GuinME pigs