UK Parliamentary debate today - Thursday 24th January 2019

Lucibee said:
It's very sad that there is so little coverage of this in the mainstream media.
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tbh, I was expecting more bad coverage than good. This is a weird situation for journalists to cover, and I see this debate as being part of us making baby steps towards revealing some deep problems with the institutions that many in UK society just instinctively trust. I see a lack of critical coverage as a positive sign, and maybe (if I'm being very optimistic) an indication that some in the media may be waking up to the fact that they've got things wrong and allowed prejudice to cloud their judgement.
 
Esther12 said:
This is a weird situation for journalists to cover
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I wonder why weird - maybe because common sense seems to have reared its head?

I guess journalists like Sarah Boseley have all the categories of UK citizen filed neatly under 'exploited underdogs', 'rabid extremists', 'poor dears', 'manipulative elite' etc. and may be wondering how the poor dears and rabid extremists came to pitch up as exploited underdogs despite their reliable information from the manipulative elite. Worrying when her paper makes its money out of stories on exploited underdogs.
 
Lucibee said:
Here is the correct link - but no sign of the section on ME: https://www.bbc.co.uk/programmes/m0002djw

It's very sad that there is so little coverage of this in the mainstream media. I've done a search, and this is what I've come up with:

Christians with ME celebrate debate on condition reaching parliament
https://www.premier.org.uk/News/UK/...brate-debate-on-condition-reaching-parliament

Belle and Sebastian singer backs Parliament debate on ME treatment
https://www.homecare.co.uk/news/article.cfm/id/1604881/chronic-fatigue-parliament-debate-ME
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Here's another one:

Belle and Sebastian singer Stuart Murdoch tells ministers they must do more for ME 'urban lepers' like himself
https://www.heraldscotland.com/news/17380238.belle-and-sebastian-singer-stuart-murdoch-tells-ministers-they-must-do-more-for-me-urban-lepers-like-himself/?fbclid=IwAR0JcgBzLSN1mbvCdLhuHKM_G6XOLagorEb1S6GhrlYKvCTWxwOhgbawR50
 
Barry said:
It's a very slippery slope if they do interfere directly, that's why they are independent. Else politicians can just barge in and influence decision-making that should be independent of political shenanigans. Like when a politician occasionally seeks to influence criminal justice proceedings. But I do agree it's a tricky one.
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There's a big difference between intervening on specifics and day-to-day operations compared with highlighting what is evidently a massive failure. This is judging the outcome, not the process (though in this case one follows the other). NICE and professional bodies are free to do whatever they want based on accepted standards, but when the outcome is massive systemic failure and the official message is that it was all good science and those patients just need to learn to behave, then there has to be intervention.

The medical institutions seem incapable of even acknowledging their failure. That guarantees they won't be able to fix it. Quite the opposite, the RCGP basically argues all the biomedical stuff should be scrapped and the disease strictly treated as behavioral. Basically: they need a damn slap behind the head because they are not doing their job.

There is only so much independence that can be allowed. When an institution fails and quadruples down on its failures there has to be external pressure. It's exactly why this disaster has unfolded for the past several decades: no one put some sense into people who are clearly getting high off their own farts.

The US senate had to pass a resolution for MS to be taken seriously. Sometimes medicine does need a kick in the shin. People are stuck in a loop, largely because so many have let their own personal beliefs and prejudices overrule good science and are now facing massive embarrassment, even possible litigation. This is exceptional but it wouldn't be the first time and certainly not the last that a self-policing profession needs a course adjustment.
 
Jonathan Edwards said:
I wonder why weird - maybe because common sense seems to have reared its head?

I guess journalists like Sarah Boseley have all the categories of UK citizen filed neatly under 'exploited underdogs', 'rabid extremists', 'poor dears', 'manipulative elite' etc. and may be wondering how the poor dears and rabid extremists came to pitch up as exploited underdogs despite their reliable information from the manipulative elite. Worrying when her paper makes its money out of stories on exploited underdogs.
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I'm thinking it must a bit awkward when most of those outlets will have several very negative disinformation articles in their archives. Many like the Guardian have uncritically promoted the BPS team's every word as if it was unimpeachable truth, borderline labeling us as dangerous militants, making threats left and right to dedicated medical professionals getting abuse for trying to help us.

Fair coverage will eventually require some minimal mea culpa and figuring out how that all went wrong. Much of this disinformation came from the SMC so this is even harder to square. Truly a bizarre arrangement, to just outsource all scientific reporting to what essentially functions as a PR outlet. This opens up questions about what other information from the SMC was unreliable. That's a lot of failure to square off.
 
Sly Saint said:
full report here:
http://researchbriefings.files.parliament.uk/documents/CDP-2019-0014/CDP-2019-0014.pdf

from this page
https://researchbriefings.parliament.uk/ResearchBriefing/Summary/CDP-2019-0014

anyone know who exactly compiled/helped to compile this?

eta: authors listed as
Authors: Nikki Sutherland; Sarah Barber; Rachael Harker no idea who they are
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My understanding is that some “clever people” employed by Parliament have to find information from where ever they can and write an ‘independent’ briefing to be put on record.

This is then made available to all MPs or anyone who asks Parliament for information on a particular debate.
 

Liz Twist MP for Blaydon
23 hrs ·
I have just spoken in the debate on Myalgic Encephalomyelitis (ME) in the House. I was keen to raise awareness of the very real problems faced by people who have this debilitating condition.

ME, which is sometimes known as Chronic fatigue syndrome (CFS), is a long-term illness that causes those affected to have extreme fatigue.

Many constituents contacted me to tell me about their experiences before this debate. Many are angry that some treatments, such as psychological treatments, are still being proposed as the most common treatment for what is a physical condition. I was glad to have the opportunity to speak on their behalf.

I was particularly pleased to speak on behalf of my constituent Angus, who was working as a Senior Lecturer before being struck down by ME. He lost his job and is now unable to do so many things he loved - walking, kayaking, mountain climbing and sailing.

Angus is a cancer surviver and is not a quitter. But patients like Angus need help. There is real lack of effective support available to ME patients. The government really need to be taking a pro-active approach to encouraging and funding research projects.



Liz McInnes MP
4 hrs ·
Yesterday I took part in a debate in Parliament regarding myalgic encephalomyelitis, more commonly known as ME.

Merryn Crofts, who lived in Norden, is one of just two people in the UK to have ME recorded as the cause of death. Her mother is clear that the guidance Merryn received was not good enough, and if it had been then Merryn may not have developed severe ME.

We need to do more to raise awareness of this illness and to make sure that sufferers and their families receive the correct advice.
 
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