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@JohnTheJack are you able to share the grounds on which you can/will appeal? And congratulations on your persistence so far!

@Binkie4 it's not clear whether they can't work with the data, due to lack of a specialist, but know where it is, or whether they've actually in effect lost it. It appears to be both. The data set is presumably there, but no one is left who knows how to find it. One would think though, that...

I suspect they'd cite confidentiality/anonymity concerns, but it'd be worth finding out if it's an option.

Yes, I completely agree, @Invisible Woman. I wasn't excusing them, rather feeling that they gamed the system.

So, reading between the lines, it appears QMUL delayed providing an answer until everyone associated with the trial was gone.

Yes, I think you're right. Hopefully, being an MP herself, Carol Monaghan will know how to play the game

I take your point @Esther12, although I didn't think there was still debate about whether ME is physiological amongst those who've actually looked at the evidence objectively. I guess I'm just not sure how well MPs will do with the technical/math arguments - I suspect they might switch off...

I doubt the DWP would have thought it worth contributing to the cost of PACE had they not thought it could yield a cure for ME, and thus get people off benefits. The DWP have apparently not paid towards any other clinical trials. They were keen to be involved based on the assumption that ME is...

I suspect the point of mentioning the various physiological things that CS lists was to illustrate that ME is not psychological, since the assumption that it is is a key flaw in the logic of PACE. For people with no particular background in, or awareness of, ME, like, I expect, most MPs...

If you've got a smartphone, the Insight Timer app is quite good - free, no ads, and you can set your own timer with assorted tings or not, as you prefer, including no end ting if you like. (It also has lots of guided mindfulness meditations).

Background for those unfamiliar with the system: Universal Credit replaces half a dozen other benefits including means-tested ESA ('sickness benefit', intended to replace a wage for those too ill to work). Disabled people who are considered sufficiently incapacitated, and who meet a couple of...

Yay! :thumbup:

https://med.stanford.edu/news/all-news/2018/01/cancer-vaccine-eliminates-tumors-in-mice.html

https://www.nature.com/articles/nature25456 There is a brief summary of the findings on the BBC news site, http://www.bbc.com/news/health-42878721

That's a nice idea @Squeezy, thank you for the thought. It's just me and the cat, so there's no one who could help like that. My carers couldn't do it because of health and safety. You've reminded me that I was thinking I could maybe get a wifi camera set up outside, to create a window to the...

Well, hope your GP is able to come up with something helpful that makes you feel a bit better :hug:

Agreed, you would think that being told they're giving their children something harmful and potentially fatal would make any parent think twice, no matter how desperate. ETA And of course they should've looked into it in the first place.

Sadly, there's a petition supporting Daniel Smith, the felon in question, on Change.org, which has apparently been accepted by the Ninth Circuit Court of Appeals in the US . The top comment on the petition seems to sum up the problem as far as the supporters go, People using this stuff are...

Contempt. Holding the patient in contempt. Contemptuous of patient choice and autonomy.

Thank you, I hope so too. This summer I'd love to be able to get the few metres to a bench in the garden that is long enough to lie down on. It seems unlikely as things stand (and there are complications, like needing an air mattress due to being very underweight, even if I could get there)...