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This is where they do a formal review and recommend bringing in app-based care. Oh look! An app has just been developed by Elaros!

Which drugs might be repurposed though? Apart from some ideas about LDN (low dose naltrexone) which seems more based on a desire for it to be a solution, how do we repurpose a drug to solve an unknown problem? Isn’t repurposing drugs just a stab in the dark?

I feel like they have given up. The only way they have a “seat at the table” is by getting involved with this low grade junk. It’s like they just got tired of there being no progress so they’ve gone “well, this will do, at least it’s “something” kind of like PROMs in a way “well if we do this...

Local neighbourhood centres the NHS will set up, to provide care closer to home. That’s lovely, how many years until that will be set up? I’ll probably still be housebound though.

I liked Järte and Iulia’s twitter feeds, didn’t look at the third lady.

Interesting that he gives out the contact details of the three women in the group. ETA well, the twitter handles. It seems he is the only man, and his blog refers to “the boy” doing 5k and 5 hours of work, which is too much.

It’s all slightly inconsistent. Which makes it all the worse he’s using his own story as evidence.

For any time line seekers

But in four years, Visible will have lots of 5 years worth of data…

Ido a monthly FUNCAP through Visible, have a year’s worth of data already

I’m still fuming that the MEA are patting themselves on the back for reporting an app to the ASA for making false claims. Oh the irony.

It ok I can ask the NHS to show the sources/evidence (when am less tired)

I second the value of an app tracking symptoms, and that includes passively (heart, sleep) as well as optional personal recordings of symptoms, activities, FUNCAP. These apps will be cheaper than running a service so they’re a shoo-in. Digital NHS cutting edge ways to keep patients at bay and...

Thanks Trish. All I can say for now is I’m not appy about all this.

However we can FOI DWP and NHS

I’m sorry I’m so foggy, did we ever get clarity on the difference between the two apps? I think I was part of the early assumptions that all mentions of Elaros/MEA “not endorsing” but publicising beta test of app/Tyson & PROMs were one app. So there are two apps? We were basically right in the...

Oh I see he’s been retweeting some other divisive subjects.

I wonder whether he has read The Salt Path?

An update on Karen via the petition and posted by the MEA who have said Charles Shepherd is in contact with the family and hospital. Karen has been told the hospital is preparing to take a legal case and there is also likely another mental capacity assessment...

My recent one they stated “face to face isn’t necessary as paper-based evidence is more useful” or something. I’ve never had a PIP face to face. I think they just have too many to assess/quicker and easier to not bother.