I have an idea about how to influence some things and possibly spark some ideas in the local area, but the first I'll need to describe the issue in their langue. I need to describe the problem (what are people experiencing), and how many people are affected, to convince people that the number of people is significant enough compared to other problem areas, significant in that their needs are unmet and it is seriously impacting their daily lives. So, about finding info on prevalence of ME (or second best, fatige).. I know this is an almost impossible ask but got to start somewhere. If you wanted an estimate of how many people suffer with ME (or fatigue 2nd best) in a particular area /local authority area/other boundary in the UK what would be the imperfect ways to attempt that? Primary care data - people coded with ME dx, people coded with fatigue? Issue: lack of dx, incorrect dx, lack of coding, incorrect coding Trusts - referrals to ME or fatigue teams? Issues: not all who need it are referred. Could reverse engineer to estimate wider prevalence e.g. if we knew only x % pwme get referred. ICBs - possibly some info on numbers referred to trusts Issues with all the above: lack of dx = not visible on any record I thought about PIP applications, could potentially get data on numbers of apps that claim for ME , fatigue etc but that's only if the main condition is ME i think, but I put my ADHD in the forefront of the application so don't know if I'd be picked up with that strategy. I assume they can't physically identify how many applications include the issue of severe long term fatigue, PEM, etc Are there datasets that could be sampled and calculated up to estimate prevalence in a larger area or over longer time? What might the council know? What about finding carers of pwme? As there will be many unpaid carers it is important to highlight as part of the issue (carer burnout and needs) What if we asked doctors how many pt they see with ME or fatigue every day as an estimate? Issue - guess, bias, many pwme won't bother with gp or may not mention it at appointment After writing all that it made me think it might be easier to do a survey and push it out though social media but the we don't get the people who are not interested in ME Stuff.. Any ideas?
Not helping much as I don’t have specific link but this is ringing some bells that AFME or MEA had done some work on this a couple of years back so best to see what’s already available.
Some existing info on common conditions/ area defined health https://www.envhealthatlas.co.uk/homepage/gotoatlas.html https://commonslibrary.parliament.uk/constituency-data-how-healthy-is-your-area/ https://www.gov.uk/government/colle...-health-data-and-mapping-tool-for-small-areas Might have method/ links to other info
Ah I see what you mean - these rely on robust reporting from primary care etc, which we don't have for ME or fatigue (which isn't even a diagnosis) yet. I'm wondering if there is a halfway house that can at least help estimate things so that local leaders can be pursuaded there are a significant number of people needing x ( and then, that they can do y )
This, Unequal access to diagnosis of myalgic encephalomyelitis in England, 2024, Ponting and Samms, might be of use.
