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https://www.s4me.info/threads/‘the-index-of-me-symptoms-times-’-developing-a-clinical-assessment-toolkit-for-me-cfs.36345/#post-506047 This is the project

Does it say anywhere that a possible MS diagnosis has been ruled out for the ME/CFS participants ?

I spotted there are small versions 50l

I’m finding the apps judgment on my state as shown in the scores and accompanying comments pretty unhelpful eg for 48 hours I’ve had symptoms at my high end and hrv at the lowest point of my range it scored me as 4 you are at a stable baseline….. which is second highest level I think part of...

One way of doing it could be for the charities to approach other schemes such as the one in the first post to collaborate on an inspection regime. it seems to me if someone can be trained to inspect against brain injury care standards they could also be trained in care standards for severe ME.

Thanks to ME/CFS Research Foundation for signing the open letter

Thanks to WE&ME Foundation for becoming the first Austrian organisation to sign the open letter.

Moderation note Please keep posts on topic for the thread and within forum rules. Thanks

Not nasal gargling but one of the few helpful things suggested by the Dr when I had laryngitis (undiagnosed ME crash) was to gargle with salt water - boiling water in the kettle dissolving teaspoon of salt letting it cool then throat gargling.

Thanks to Grupa Wsparcia ME/CFS in Poland for joining our list of signatories to the open letter to Cochrane

Thanks to Grupa Wsparcia ME/CFS from Poland for being the latest signatory and to @Mike Harley for help.

Email feedback on the document to feedback@meassociation.org.uk https://m.facebook.com/story.php?story_fbid=pfbid02TcwbQ8jAjzWYHzfjaijnVn2eNzGctn8DmCAaQYQjvZ6PJ4uFWgXDF39G6Hzg4x8jl&id=100064321254767&mibextid=WC7FNe

Yes if it’s something that requires a time/travel commitment I was interviewed at home for a government research programme and got a £40 voucher it was probably about 90 mins. And pretty demanding cognitively. I think anything less demanding than that such as Decode ME questionnaire and...

I’m using the basic visible I’m struggling a little bit with working out how best to do it when my sleeping pattern is haywire. Sometimes the morning reading is before I’ve had any sleep. My hrv doesn’t seem to be predictive of worsening so far although my resting heart rate is noticeably...

Update on ME Association letter about Royal College of Psychiatry website no reply but the content has been taken down. Look at this post on Facebook...

Thanks to Schweizerische Gesellschaft für ME & CFS for becoming the latest signatory to the open letter to Cochrane. Thanks to @Mike Harley and @EndME for help identifying organisations and with translation.

Many thanks to Schweizerische Gesellschaft für ME & CFS for becoming our latest signatory organisation and adding a new country to our list .

‘definitive’

It’s a good thing for them they are not a public body because mishandling a complaint counts as maladministration and can be referred to the Ombudsman. Clearly despite being largely public funded they don’t aspire to the standards of public service.

Great job @Andy