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Something that MEAction did which helped us a lot, was the survey about GET/CBT accompanied by a really good report, which was then forwarded to the NICE guidelines committee. I think the countess of mar asked them to do it. I was hoping they would do another for hospital experiences & other...

It is shielding.. while not being “shielding”, at the same time.. “In addition, the Government is issuing new guidance to clinically extremely vulnerable people. This is set out in the following pages. Whilst this is not a return to the very restrictive shielding advice you may have followed...

Well, I mean, if by “help” they mean telling you to get your shopping online or telling you to contact the council who will help with a priority slot.. (there is also that NHS responders scheme thing which we have never used, as we managed to find a really nice lady in the neighbouring block of...

(From the department of health and social care, email for clinically extremely vulnerable people).

I just got an email from the govt saying - basically - you need to be shielding, but it’s not going to be *formally called* shielding (ie there’s not going to be the food parcels for you anymore), but shield and don’t go out anyway. (Except for exercise & health appts)

I agree with Trish and what others have said above about some of it not being relevant to severe ME. But I would also add that the bit about emotional distress / challenging situations is important. It is one of the weirdest parts of the illness. When someone snaps at me, or someone hurts me or...

I agree, it’s terrible that so many vital treatments and surgeries were cancelled. You’re right in many regions there were non intensive care beds empty and perhaps even there might have been available staff in some regions. But I don’t think this was the case everywhere, and I also think they...

@Daisybell From my experience, it is not that non covid patients are being seen as less important than covid. There are two reasons they were cancelled. 1. Because they assumed a lot of beds and staff would be occupied by COVID, and/or they actually were occupied by COVID. In London this was...

Oh yeah, there’s that as well... Honestly I stopped watching the news and reading news past few weeks / month as just couldn’t cope with everything else going on with my surgery. I think that’s the way I’ll be dealing with it for the next few months as every time I look up what’s happening I...

We had similar experiences. My mum kept putting in Sainsburys orders because there’s one specific detergent that she wants that only Sainsburys does. And she used to do a big shop and surprise .. the order would arrive without any of the detergent lol. And any of the actual important food...

This is our experience with Ocado too. Very few substitutions and even if they do, they’re mostly very similar to the actual product. Also the driver always brings it up to the door. We’ve never really had problems. It’s why we decided to stick with them for a while now.

It’s been ok for us! my partner comes round once a week to drop off food and is mostly able to get all the things we need in the shops. My mum sends him the list though so I don’t always know. We have a weekly Abel and Cole order which now lets us add whatever we need - so we have eggs, milk...

Oh yeah. If there’s a second wave. :(

Wait why would there be supply chain issues?

Wait did the UK govt’s app for contact tracing ever get off the ground? There was so much publicity around that? (I’ve been out of the Covid loop for a while). Why don’t we hear about it anymore?! And what’s happened to “Vaccine by September?”

I’m also pretty sure Curable was along these lines as well. There was a talk about rewiring your responses to pain at some point. The thing is though so many people do it / advocate for it. I follow an Instagram account for spoonies and the person in it did curable and she was talking about how...

Dan‘s ANS rewire programme and the optimum health clinic do similar things too. I think both are quite popular, unfortunately.

Oh ok! That’s good to know. I think I took it literally. I was also thinking of his other comment I read in the twitter thread, when I was replying, (when he was replying to S4ME’s tweet about the general discussion), when he says that we are going on an unhelpful crusade, and that people are...

Sorry, just want to address one more thing. “Only for you Anil?”. Anil is lovely yes. But there’s also lots more who do want to know. If we seem frustrated or angry, there’s often a reason for it - maybe we know people who are desperate and terrified of whether they have a structural issue and...

I think it would be great if Michael Van Elzakkar could come on this forum to share more of his thoughts. So is he giving weight to the theory that traction (& fixing in a traction position) can alleviate symptoms? By getting rid of compression - Because compression of the brain stem can cause...