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Someone on bacme has a mate or relative wanting to set up a business in it?

If we really wanted to push it the you could finish by asking for a charter of adjusments / behaviour / ethics for ME - I think it’s been mentioned somewhere in a slightly related form and could include thing like a committment towards behaviour/list of adjustments that allows a fair...

They are linked to not requiring that the psychiatric profession understand autism properly - just like health conditions if a patient has one - they should be capable of understanding what is explained by these in calibrating any assessments if there were potential comorbidities and knowing...

I think they can. The ‘new/breakthru’ of SSD is that unlike its predecessors they don’t need to be free of such other conditions or prove such symptoms aren’t indeed caused by them …. Just be ‘anxious enough’ even if you did have a really bad cancer and other illness etc

Partly replying because agree this is important and also agree timescale typically screws us. The biggest ‘sitter’ going by the three things they’ve enphasised (good, bad/issues and other) is perhaps using how decodeME actually properly started by building in proper adjustments that meant...

Symptom (to doctor and society) simplified as ‘moaning’? Treatment = what ‘deals with’ making them go away?

When we compare this item to the PROMs I'm curious whether they have gone out of their way to fix this (ie whether this happens to coincidentally justify changes, or whether they've done the same thing with the PROMs measure replacing it anyway)?

accurate narratives rather than accurate information, science, prognosis, diagnosis, the list is endless on the important things they don't mention. says it all really about an area if the most important bit is the sales spiel that even a marketer would - in any other area due to legal...

I wonder that, and note the references people make to Meyers-Briggs are probably more generally but the one job interview I’ve ever had where someone had added something like that in I was intrigued that it seemed to be more about asking the same questions (about who you are and you personality...

@Tal_lula might be able to confirm whether she is happy with this summary but the original post from here (which included the letter) detailed her fuller experience, which notes reasonable indications that the individual she saw was potentially using terms more consistent with 'FND' these days...

Wow, so the GP actually wrote back - I'm guessing there would have been another letter in your records if they had responded to the GP with any concern/offer of help/thanks for being informed etc? Interesting that the GP didn't mention this to you at the time, if I have read that correctly? Be...

Thank you for sharing. I'm sorry to hear of your illness and experiences. The letter is particularly insightful and can be taken a number of ways reading between lines. However on clear message comes through to me which is that they very much have an eye on the data when they are thinking...

True , but I don't know the details about how commissioning works however there needs to be truth and fact regarding the picture of what there is. I don't think that and good intentions can be an excuse, or useful for the future, in hiding what a service is offering and to whom. And the...

:) As a side note, easy to get distracted by someone wanting to frame the conversation on 'how would you tweak this huge amounts of measures of the patient' it has taken me a moment to step aside and wonder why the priorities/focus on the ME Association haven't been eg: - to come up with a...

This is the graphs from the paper I keep mentioning that shows how dangerous using perceived activity as a measure on its own is: https://www.s4me.info/threads/the-p...-reduction-in-fatigue-2013-knoop-et-al.24643/ The thrust of what was 'learned' from that paper which included Knoop as an...

Now I've cleaned up my accidental mulching another quote I was pondering with the posted intended I'm going to insert a quote from the paper I'm thinking of when I mention this: There is a big issue, in fact I'd say the real crux of ME isn't the 'PEM' it's the deterioration from consistently...

Indeed, it's OK we don't offer doctors or research because these very mild people get to the end of this course that includes saying things more positively and the same old approach dressed up with a different name as a Krypton factor to filter out those least well and filled in these PROMS...

there is quite a simple thing going on here the problem with the old guideline on CFS could be summarised that they were treating a serious medical condition with rehab without treatment first. Just as bad as if they did cancer, MS, RA, asthma or anything else with no treatment then any...

agree. there is a big issue that I'm not sure whether it would be the case for other health conditions but certainly wouldn't be the case for research in other sectors, of thinking that rather than picking someone specifically 'qualified to represent the exact situation being looked into' (eg if...

EDITED/APOLOGIES: I'd meant to post the below, and the top bit was half-formed on phone but not checked. I will do so and post that so once I've checked it through. and to add further to point one in this above comment about making sure physical function is part of it then objective measures...