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I suppose they’re being relentlessly harassed and threatened now….

Here is a screenshot of a cartoon in the replies. It includes the F word

Aha, yes the “in the chat” comments were referred to towards the end of Tyson’s talk- after she has extensively derided them. The people in the chat seemed to be wholeheartedly in agreement. Luckily there didn’t appear to be any abuse in the comments either. Good job they warned everyone ahead...

The issues with wearables seems to be that because they’re all different in how they measure, and she doesn’t know the “under the hood” calculations they use etc, they’re not reliable and -this is key- therefore those results wouldn’t be fit to use as clinical trial data. Generating a data set...

a lot of comments in the chat about wearables being incredibly unreliable and not recording

I’ve accessed and downloaded the closed caps document. Here are photos of Tysons talk I only skimmed it the PROMS data can be used for clinical research Attendees were commenting how unreliable they find wearables

We need an anti-coach to train us not to do so much “Come on, keep going, keep lying down! Don’t look at the state of the place, do not think you can “just tidy round a bit” only losers tidy up!!!!”

That may be lost in translation!

I know what I was trying to think of, but couldn’t. Emotional Labour? Mental load? Mental load is usually described as the unseen/behind the scenes work a family member does (usually female) to run the family, but it’s similar to us managing our health on our own - anticipating needs -...

I am 100% there mouthing “where’s me danger pointer” and doing a trigger finger

Yes it would! I would hope the producers are aware of the guidance, but then again I can think of some ME clinics/physios who would happily “oversee” such “heroic” efforts. Assuming a pwME did hypothetically train and want to also enter the Paralympics, which category would they come under...

I wouldn’t really expect a review to ask about work, but I would have expected a review of my ME to end up with me talking about work as that was my main issue when I was Mild and deteriorating. An annual review would have had a few years of me a) deteriorating and b) having a job which didn’t...

The NICE guidance states exercise- physical activity should be overseen by ME/CFS specialist https://www.nice.org.uk/guidance/ng206/chapter/recommendations#incorporating-physical-activity-and-exercise

When I was mild I started jogging again. I also started cycling too. Never as far as I used to, never as regularly as I used to, it was good 6 months. The crash was bad. Never did either again, it’s been over a decade. it’s absolutely possible to have a period of remission or improvement. I...

To be honest, having a chat with a professional might just be what you need. I knew I was in trouble for a few years, but work, mortgage, life, you have to keep going. Maybe an action plan session of “this isn’t working, you’re getting worse, the risks are x, y, z what changes will you make?”...

But exercise is good! Just because you can’t do it, or it makes you incredibly unwell isn’t a reason to slack off! I so wish I was a fly on the wall at that brainstorming session “Right, Paralympics have shown that sport is for everyone! Which conditions are under-represented in sport? Are...

I was being somewhat facetious, they wouldn’t care for reported outcomes 3 years after last being seen in the clinic. The PROMS are to confirm the effectiveness of the clinics intervention. Any PROM analysing annual reviews would find that nobody is getting an annual review.

Yes, I was thinking it could be done by a practice nurse, like the diabetes, asthma etc

Maybe there should be an annual review PROMS

Maybe there should be an annual review PROMS