UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

Agree. And will be more than relieved to be proven wrong by one of them making clear that they are being specific in asking for this

but I’m worried if we have other people signing this off as a service ‘in our name’ for us when they are actually signing off something which hides consigning us to ‘no medical care’ yet again

but I’m just seeing them getting dragged along by the tide of people who benefit from the status quo using attrition and overwhelm (by making any change like pulling teeth then rushing very deliberately any time given for proper ‘what we need’ beyond what they know would be fair for those living with ME due to the situation we are put in)

I say this because anyone who things leaving those same people ‘in charge’ as if a little change/compromise (but it isn’t actually because the guideline was a compromise so this is more of the same refusing to change stubbornness then selling ‘it could be worse’ as ‘a favour’) will mean things will miraculously change in the right direction as things go forward.

But the nature of their role/remit and training and turkeys don’t vote for Xmas means they aren’t interesting in anything other than treating US as the problem ‘to be managed’ rather than the underlying condition and helping get to the bottom in getting the basics research or helping us needs, and that other illnesses have

I think bluntly we are deliberately being kept from having access to medics, particularly doctors, and I suspect these days now that it is a post-truth/can’t prove if you can’t access someone who will look at you situation we are being deliberately put in. The ‘problem’ of the illness being treated as something properly medical that will ever be researched taken seriously or things to change so we have a chance of a life has been disappeared because…. motivational OTs or physios will be the only ones who will be allowed to ‘assess’ is and their remit only allows them to gaslight us or do certain therapies that will never work.

And we will never be able to find a medic to even look at any with ME because they are taught it’s their remit (even if what they do doesn’t and can never be of any help) including GPs and whatever else we might actually have alongside.