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I have started to explain fatigue/increased symptoms. When I am fatigued I feel nauseous, or unsteady, or breathless, or I shake involuntarily.

My view of TfME is that because of the diplomatic background, they’re very diplomatic. Which is fine, that’s their choice. A lot of us would like to see some undiplomatic push-back against this rubbish.

I had a local GP. One of the reasons I chose it was that it was close, on a main rd, could take a bus, space for taxi drop-off. Never got an appointment there. They had a consortium of practices and I could only ever be seen at a different practice which was impossible to get to and all kinds...

:laugh: For the wording and :banghead: for the situation

Who is up for doing FOIs? FOI who wrote the delivery plan FOI the training material

If there is a service template for mild to moderate, and an “exploration” of how to serve the very severe, then what happens to severe people? Still nothing?

I thought NHS England was abolished earlier this year? https://www.bbc.co.uk/news/articles/crknrrz7ln6o#:~:text=The%20government%20has%20announced%20NHS,the%20services%20it%20does%20already.

Ah well worry not! Instead of not getting any help, the app means that you need to read/monitor/answer questions/communicate with an OT with any questions. Then all of that data is used to prove the NHS has been providing you with care successfully!* Another bonus will be that the NHS can...

This is what I suspected (not at all scientific, yet it seemed kind of…obvious)

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.