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I don't suppose pwME will be allowed to attend. I asked last year and they said no. I don't have the capacity to do anything about it this year. I hope others will.

From Wikipedia: A dolorimeter is an instrument used to measure pain threshold and pain tolerance. Dolorimetry has been defined as "the measurement of pain sensitivity or pain intensity". Dolorimeters apply steady pressure, heat, or electrical stimulation to some area, or move a joint or other...

I doubt many are reporting that a single very minor episode led to long term detrioration. Much more often in the cases I've read deterioration that the pwME doesn't recover from occurs after repeated exertion and crashes over weeks or months, with each time their threshold for triggering PEM...

Yes, yes, yes, a thousand times yes. Very well said, hotblack. Edit: I would add that for me the wearable tracking is about making me take more notice of my symptoms and recognise when to stop and to give myself permission to stop. Not everyone needs this.

I think FUNCAP covers this and has the advantage of applying across all severity levels and taking into account whether doing the activity means you can do little else that day or it doesn't affect you. The cumulative effect of activities and their after effects need to be taken into account I...

I think a combination of FUNCAP and a cognitive test filled in every couple of months and a wearable, perhaps worn around the ankle that does both steps and time upright. Have thousands of people of all severity levels do this for several years and there would be such a rich set of data...

Keith Geraghty is named as one of the team with Sarah Tyson producing the MEA clinical assessment toolkit. For more discussion and information on the Toolkit project, go to this thread

I'm trying to get my head around where this project is up to. Here's a copy of information about who is on the team running the project: https://www.s4me.info/threads/uk-me-association-funds-research-for-a-new-clinical-assessment-toolkit-in-nhs-me-cfs-specialist-services-2023.33221/post-535585...

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...