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Katie's avatar

So much in this book is so important for ME and wider IACCs. The subjective experience has been devalued as evidence so much as to make us completely unheard, combined with nefarious pressure from the top to keep us that way. GPs literally never ask about ME, how we are in relation to it, how our family carers are coping, what we need. It is still completely taboo, partly as they don’t feel confident in it, but neither will they invest time in learning about it, even basic stuff like what is PESE/PEM and helping us avoiding harm.

I’m trying to write to my GP to highlight the lack of clinical pathway of medical specialism for ME and other IACCs, that GPs have been made complicit in harms and they need to fight for change within the system to change that, with a brief overview of the politics and history.

I’m Signposting them to training and highlighting the mass disabling pandemic and how this is the most common group of health conditions they know nothing about, due to decades of interference in the scientific process, and how many of us know healthcare is not safe, and are also excluded from vaccination. That they could be protecting themselves and patients via low cost simple methods to reduce airborne disease spread.

How do I get their attention? Giving my own (and my sister’s) decades long story just seems to make it far too long. Giving references seems necessary as they won’t believe me without them, but it seems OTT and despite me taking over 6 months to try to write it so far, will give the impression that I am cognitively and physical more able than I say, which is a problem when I’m trying to highlight how inaccessible healthcare is for severe and very severe pwME and how much I’m struggling.

Any thoughts and suggestions welcome!

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Katie's avatar

I’ve had two thoughts about the book, which I’ve nearly finished. Please excuse the length/poor expression.

Charity/condition twinning - I’d like to see a really high profile campaign led by another condition (eg an AIDS charity) about ME and post infectious illness in general.

We need lifting up. We have been trying for decades. Medical professionals have started to get involved via Long Covid but have also found themselves excluded as soon as they become “patients” and it has not shifted attitudes a lot. It seems like the big cancer charities, or AIDS orgs have kudos and resources that could rub off if they chose to highlight commonalities and used their platforms to raise our voices.

We could reference the history - both emerging epidemics in the 80s. Hilary Johnson’s book - how funds for ME were misused and also probably transferred into AIDS/HIV research (I can’t remember the exact details). How AIDS was chosen over ME due to more the established able-bodied wider LGBT+ community to carry out activism and the obvious dying, whereas it was clear ME could be silenced and unfunded. In fact it has been the test case to see what can be done to minimise insurance and welfare claims, discourage biomedical research and neglect chronically ill people.

They could raise awareness of all infection associated illness and the lack of resources other communities have - acknowledging their relative privilege. This would raise their profile with, and elicit support from, the vast numbers of people affected and make useful connections.

They could also raise awareness of ME, POTS & Long Covid etc and importance of infection control.

Are people with HIV so well managed medically in the UK that the pandemic is largely ignored by the community now, or are some still masking and mitigating against covid infection? If not, the vast difference in experience (and knowledge) between the two groups could be highlighted and call for more research, support, safe healthcare, dedicated wards, respite and supported living, and specialist centres. The numbers of us now warrant crisis-level action.

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