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I think the only ethical way to study this is to do a longitudinal study over several years with people at all severity levels, tracking their activity objectively with wearables and symptoms and severity, and seeing whether upticks in activity are followed by prolonged downturns.

Hi, @ragelka, welcome to the forum. Thank you for sharing your experience. What an awful scam. I'm sorry to hear you got sucked in to wasting your money on it.

I've been thinking back over the last 35 years since the psychiatrists adopted all post infectious and other fatigue syndromes as their territory and decided we were misinterpreting our symptoms and too scared to move and needed CBT, with a side helping of exercise therapists thinking we were...

I agree, I'm one of them. I think the proportion of us who worsen is often underestimated.

I don't think it's the use of technology for some aspects of health care that's the problem here. I think it's what content and functionality is provided on that technology, and whether it's intended as an adjunct to medical care, or as a replacement. We still need medical diagnosis...

There is a lot of anecdotal evidence of long term worsening following GET from large patient surveys. I think it is reasonable to attribute the worsening in at least some cases to the increased activity because the same surveys show much lower levels of worsening for pacing and for other...

This started well before the current government.

Indeed. The forum wouldn't exist without you and people like you contributing. It also occurred to me that there are jobs on the forum that we need more volunteers to help with, so if that's of interest, do contact a committee member. If programming is something you enjoy, there are plenty of...

If they are as poor as the current beta version of the Open-OH app I can't imagine them getting much use. I suspect with NHS cuts they will be expected to largely replace what ME/CFS clinics do now, with just occasional phone or online communication with a therapist. It's possible they will...

I could be wrong on some of it. It's not very clear. I guess someone could do an FOI on the government contract for these apps, since they are government funded. Or maybe the details are public. I don't have the capacity to dig into it.

ELAROS people have no clinical expertise, they are just a business being paid by the government to produce NHS apps. They rely on being told which organisations will provide the clinical materials. For Long Covid the clinical input is being led by Prof Manoj Sivan of Leeds University, and...

3 apps 1. C-19yrs which we can't access as it's only available if you are signed up to a UK NHS Long Covid clinic that uses it. 2. Open-OH which is in beta testing and available on app stores which has the Long Covid materials on is presumably the same as on the first app and is intended to...

Members are free to continue discussions on any thread if they wish. Nobody has said the thread should be inactive. No need to invite private chats.

Which sounds frighteningly awful. GET on steroids.

I have reduced the images.

Do you have a direct link to public information about funding of the MEA Tyson PROMs project in this phase of getting it implemented on the ELAROS apps and in the NHS clinics? All we've seen so far is the £90,000 from MEA funds to develop the materials. Since that's been going for some time...

Thank you and well done, @MittEremltage. And thanks to BHC for removing the reference.

I can't keep up with all these posts. I just want to make one point. Natalie, you keep referring to PEM as a symptom. I think that's wrong. I think it's an episodic phenomenon of a change in the severity and sometimes number of symptoms.

Some researchers have suggested overtraining syndrome in athletes causes PEM. I'm not saying PEM can't possibly occur in other conditions, but I'm not aware of it being listed as a feature of other syndromes. I'm not questioning your childhood experience. but I'm not sure what relevance this has...

If TTT or 2day CPET were a requirement for disability benefits, that would be a serious problem. Some won't get positive results on either, and some are too sick to do them, and the science isn't solid. But if the tests are used as an additional piece of evidence for some pwME, added to FUNCAP...