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Can you detail a bit more about what this would look like? A wider breakdown of B and T cell populations? Would it include information about innate immune cells too? When you say function do you mean function of the cells? What sort of measures would this include? I’m just trying to understand...

Agree it’s mad. We all have hope. We wouldn’t do all this if we didn’t. What we don’t have is much tolerance for false hope or just lying to people. I didn’t see the e-learning module as particularly upbeat!

What format do you think would be best for getting to as many healthcare professionals as possible?

The MEA have highlighted that “The Timms Review of Personal Independent Payments (PIP) has now opened to the public to submit their evidence towards the consultation” https://meassociation.org.uk/2026/03/timms-review-of-personal-independence-payment-pip-call-for-evidence/ Government...

There’s no motivation for them to. Things seem to work for them, they get to feel involved and important, etc. I am interested in why they have been so resistant to accepting there may be problems though. It’s not as if people haven’t highlighted them. I guess there’s always people new to the...

News of the module has been posted by AfME who say “We’ve heard some early feedback that this is a positive improvement on previous versions. We are currently reviewing the updated module in detail and will continue to share any feedback or concerns.”...

Agree. I think there is a lot to welcome here and hope I made that clear in my posts. If this were tweaked and part of wider action it would be very welcome.

Would be great if anyone in those areas could write to their MPs and let them know this is not supported by many patients. John Milne is one of AfMe’s parliamentary champions so you’d hope they could help educate him too.

For MM I think quality is as important as quantity from what some studies say (see this thread) although am not sure. And on quantity, even beyond the correlation/causation point, even if we assume the number of NK cells is important for ME/CFS there seems to sometimes be assumption of how they...

I’m still not convinced by the idea that you ‘need’ high NK cells or should be trying to boost them. It seems to make assumptions about the mechanisms at work that we do not know.

It’s more a case of different organisations and different motivations.

I’ve been through and made some notes. Overall I think this is largely good, not perfect and I will criticise below, but that’s because it’s important to highlight where I see problems. It is part of what we do here. It is 80-90% good and 10-20% not IMHO but 100% better than anything I’ve seen...

I understand people’s frustration because of problems we’ve had, particularly with research funding. But if we had a solid evidence we would have MHRA and NICE on the side of that, I have no doubt. The politics lies elsewhere and is helped by the lack of evidence. Which is exactly why we should...

I’m going through and making notes which I’ll share when complete but I agree with @Trish that it’s largely good and very welcome. Not perfect, not without bits I disagree with, it could be better with some tweaks, but better than anything I’ve seen from the NHS before. If those doctors and...

It looks very close to the first sentence I have seen in the NHS e-learning module which may not be a coincidence

The NHS is there to provided evidenced treatments. That is it’s role. That’s it. We absolutely need research to find treatments. But that is a separate issue and fighting to get the NHS to do something it isn’t set up for will make our job harder. Both in terms of getting the service we need...

Sorry I’m late to this and now writing a lot. But to add one clarification or thought When I say help with non-ME/CFS things this may not be an entirely accurate representation. Because so much of what we experience is ME/CFS or related. I mean common but perhaps not core symptoms. Not...

I’ve done that and my experience is they want to refer you on so (kind take) you can get help and get better (less kind take) they don’t have to deal with you. GPs seem to primarily act as referral gatekeepers. The idea of they should spend time with patients or support them directly seems not...

Link to the resource for those not on or wanting to go to X https://learninghub.nhs.uk/Resource/79376/Item But that wasn’t loading for me, remove the Item works but gives a message saying you need to be registered https://learninghub.nhs.uk/Resource/79376 However @Lucibee also says And I...

I’ve been through the key structural elements part of the document and I think it’s good, thank you @Jonathan Edwards it certainly could describe what we want. It could though describe something less than what we want. Some specifics.I want to be able to regularly and reliably get vaccinations...