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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

I really, really hope you ge a polite apology. I’m sure they think they’re being brilliantly inclusive. I wonder whether they would be up for paying for and filming CPET test? I doubt it.

Care and support plans https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#assessment-and-care-and-support-planning-by-an-mecfs-specialist-team

Once a year review in primary care is the NICE recommendation https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#review-in-primary-care

Once a year review in primary care is the NICE recommendation https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#review-in-primary-care

I think it would be a good question for the APPG - what about long term 3,5,10 year monitoring of ME? For context, most clinics discharge patients back to GP within a year or less, we’d like to see long-tm updates, data etc.

Delivery plan! https://www.actionforme.org.uk/research-and-campaigns/campaigning-for-change/mecfs-delivery-plan/#:~:text=On%2012%20May%2C%20World%20ME,devolved%20nations%20of%20the%20UK.

Well how about they check up on us every year, once a year, say for 5 years?

So THAT’S why they don’t

I mean, the wearables debate is a debate, but frankly I’m not convinced by Tyson’s arguments as to them not being an option. I note in the Newcastle pilot the NHS gave a wearable to participants, some even if you don’t use them or a smartphone, you could be given it to try out. Which circles...

You need the “baseline assessment tool” and the third tab from left “data sheet” https://www.nice.org.uk/guidance/ng206/resources/baseline-assessment-tool-excel-9265185613