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The answer to any Parliamentary Question is simple. It was a project involving people with ME and funded by the ME Association. What politician is going to question that. There will be soooooo many issues across the board to address in the new Parliament. This level of detail is too low to...

I’m definitely ok then :D:thumbup:

It would seem to be an argument for treating people as having medically as yet unexplainable symptoms, reclaiming that from those who use the term as camouflage for a psychosomatic diagnosis

Pretty much the discussion I had with the candidate I’m in contact with. I referred to the Delivery Plan as a minimum product that must be built on to deliver significant change, particularly thinking of very severe ME/CFS people.

I was early 50s when I got diagnosed - part of the menopause age peak combined with gradual onset not getting picked up leads to diagnosis at a later age im not super techie im on my second smartphone I keep phones for several years. I did have a laptop but it is obsolete have only used...

I think it means from birth I’m not aware of people having it from birth but I was one of the older onset around menopause group and not up to speed with paediatric aspects.

Cures all ills like yoga and mindfulness

What no kale?

Presumably the article is part of a push back because there are positive things happening - usual story

There’s a thread with comments on some media guidelines AFME did that might have something useful on it https://www.s4me.info/threads/uk-action-for-me-media-guidelines-for-reporting-on-m-e.32363/

For the single purpose of monitoring an individual that individual’s information are all you need but obviously the accuracy may be a valid concern for other purposes but how much of a concern

SPF. Define a lot, define a little?

Good example

If there’s a strong argument that wearables aren’t accurate why are monitors used in elite sports, cycling, football etc And I make the point that for monitoring an individual the trends for that individual up or down are likely more important than the number.

Two days isn’t long to receive a response especially from organisations that are run by pwME

I had to Google that :)

Maybe this short one from CDC https://www.cdc.gov/me-cfs/pdfs/toolkit/What-are-MECFS-Symptoms_508.pdf

So I can’t comment on most aspects as I’m in the UK. I think age/sex aren’t particularly useful criteria one of the useless General Practitioners I saw when trying to get a diagnosis was young and female. It’s more about the individual. If there’s a group for PWME on Facebook or social media...

I’m guessing you’re in USA? Which I think is useful for commenters to know as things vary so much between countries.