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My score came out as 3.7 lower (ie less severe) end of moderate the areas that are most challenging are activity outside the house and inside the house 2.6/2.7 Least problematic the 3 where my score was “mild” personal hygiene 5.0, communication 4.6 and light/sound 4.3 I think it is a good...

In my opinion the discussion being on the forum means it is a lot easier to follow than anything on social media with multiple branches. You start at post 1 and skim through the thread. if the reader is a researcher who is not ill that shouldn’t be problematic.

It says to answer based on an average day not best or worst . I think people understand that ok I don’t think maximal would make it clearer for PWME generally as it’s not commonly used

Probably because a lot of PWME and clinicians don’t look much beyond fatigue as a description of what’s wrong when as we know it’s a whole bundle of things that are affected

I didn’t really register what PEM really was until I started reading materials from ME Association which would have been towards the end of the first year after I got diagnosed. So this doesn’t surprise me.

This information from MS Trust in the UK suggests that the life expectancy for people with MS is around 10 years lower than average https://mstrust.org.uk/a-z/life-expectancy

What right do they have to dictate what “good” rest is to anyone.

Excellent articles @Andy @Chris Ponting :thumbup:

I think the fact that numerous alternative narratives out there,that some people diagnosed with ME/CFS themselves buy into around “what helps” (ranging from GET/CBT, various protocols, brain retraining as pushed by sellers of different workshops etc) certainly muddies the water in terms of...

Similar scenario with the Hillsborough football disaster, dragged on for many years and ultimately a tv drama broke through with the public. But the deaths all happened in front of TV cameras and despite all the stonewalling the harm could not be hidden away. I don’t have any expertise in...

Yeah clueless

Do you have a link to the article for those of us not on X

There are multiple elements An individuals own financial resources family financial resources and relationship or lack of one with family Whether there is any effective social or health safety net where you live, If there is any provision do you have access to it

They modestly describe themselves as dedicated which would appear to be how they perceive their pursuit of their huge vested interest

Definitely didn’t notice intolerance when mild/undiagnosed. I could drink a bottle of wine in an evening at weekends, which is loads compared to my very occasional glass or two about 1/2 a dozen times a year but not much compared to a lot of people’s intake on a night out. I just stopped...

Suggestion as treatment Abracadabra

Ugh just ugh

Missing two letters from the world effective In….

Thanks Jonas:thumbup:

Good summary @Andy Final bullet last sentence how about As will if their circumstances allow them the possibility of pacing activity.