Search results

There seems to be two defining issues: data protection and inclusion/vetting. Data Protection: The UK General Data Protection Regulation (GDPR) applies to anyone - individuals, organisations, companies - that holds personal data. In the case of individuals there's a...

It's a matter of how it's done. If DfME have good journalistic contacts, there's no harm in them saying "look at this Parliament event, shame it was buried, any chance of a resurrection ?" That's very different from doing a formal complaint and simply p******g everyone in the news room who'll...

The BBC's remit doesn't include having to cover "everything" - anyone wanting to complain on that basis will need to get to grips with the Editorial Guidelines starts here> Section 1: The BBC's Editorial Standards The BBC is also not endowed with limitless resources, something its editors will...

With Parliament based events it's always a matter of luck whether it's a quiet political newsday and the event therefore get lots of attention whatever it is about, or there are competing stories that bury it no matter how significant it might be. The APPG did an excellent job to pull...

Other than The Times I can't see any news org report on Rethinking ME listed in the top 20 results from Google or Bing. There are other things going on in Parliament that are concerning all news organisations far more than just another APPG report, even if that report is supported by the Health...

I think the phrase "banged to rights" applies and that MEA, AfME and ForwardME should all be encouraged to make complaints to the SMCs Trustees re: the offending chapter.

The Rethinking ME report is an excellent piece of work, which together with all the background effort to tie in the Health Secretary, NICE and media exposure to a united front with all the main patient organisations is close to being a peerless bit of advocacy. In a different climate, so not a...

Any rules based system that isn't properly policed will always impact most heavily on the most vulnerable but we have see this in the context of what is happening in the UK where almost every system of social and health support is under immense pressure with the inevitable result that the good...

Table 1 starts with the unquestioned equation ME/CFS = Neurasthenia, an issue relevant to this current thread: https://www.s4me.info/threads/help-with-advocating.27823/#post-420572

The neurasthenia conflation still alive: https://www.s4me.info/threads/facts-and-myths-about-chronic-fatigue-syndrome-2022-per-fink-et-al-danish-medical-journal-article.27817/#post-420639 see Table 1, first item George Beard - text in Norwegian but I don't think it needs a translation !

I'm guessing young lawyers would like a clear line of argument as to why disease x may or may not be considered, or to previously have been considered, to be psychiatric, even if that view is contested or has been changed. While it is true that neither ME nor CFS was ever listed in the ICD as...

It isn't in DSM 5 ! At least not in the recently published DSM -5 TR - list of codes here: DSM-5 Diagnostic Codes Edit for clarity

I am not a lawyer but: It's important to distinguish between the actions of the Trustees - who in Law are "the Charity" - and the actions of those who work for/operate the Charity. In the Percy case Christ Church Oxford: Dean Martyn Percy cleared for the fifth time, the Trustees were directly...

A complaint to the Charity Commission (CC) has to be tightly matched to both Charity Law and to CC guidance, and excepting where there is gross breach of governance, the CC acts not so much as a regulator but as a support agency for the improvement of the function of a Charity and complaints...

Maybe a breach of BBC editorial guidelines: Editorial Guidelines 1.3 The public interest "The BBC’s Mission [4] specifies that we must ‘act in the public interest’. It is in the public interest to fulfil our mission to produce output to inform, educate and entertain. There is no single...

None of the cut off scores allows separation of cognitive disability from overall physical functioning. It leaves the possibility for someone to be substantially impacted by cognitive deficits while still recording only limited overall reduction in function. Ironically the paper says: "There...

If you want to go down the RCP rabbit hole - there's this: https://rcpwatch.wordpress.com/ - though I'd suggest it's best avoided. These are people who have actively written themselves into their very own conspiracy theory, actors playing actors etc. The only way to deal with them is to stand...

In terms of the 'my sister has it' - this may be true and I'd counsel caution about dissing a possible PwME who's not sought a public role in any of this. There are 3 Fox sisters, two in the public sphere and one whose only public association is with a smallish voluntary sector org operating in...

So the CEO of a Registered Charity has written a book in which she compares, by implication, patient advocacy with the Holocaust ? Still we are only a small group of mass murderers so I guess that makes sense.

The role of EDMs has changed over time and there are calls for EDMs to be reformed or got rid of, certainly there are MPs who refuse to sign any EDM. Few EDMs get more than 30 signatures and those signatures are predominantly from opposition MPs - notably the smaller Parties for who it's a way...