UK 21 June 2018 | 3-hour ME debate in Westminster Hall, secured by Carol Monaghan

Sly Saint said:
Something else struck me yesterday when they were discussing stigma and started relating it to the Mental Health stigma issue;
the irony is those who are considered 'champions' in the 'fight to remove the stigma of mental health'
are, by and large, the same people largely responsible for the stigma attached to ME.
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Removing the stigma of "mental health" is a current government sound bite.

It sounds nice and progressive but it means that the government who charge a bedroom tax on the poor and disabled, tell people they are fit to work who drop dead a week later, cut disability benefit off using ATOS, removed the minimum income safety threshold for people on benefits, sanction disabled people and others on benefits so they cant feed themselves and have to go to food banks,.......


WANTS TO DECLARE MORE PEOPLE MENTALITY ILL.

Who will they use to market this "destigmatising of mental illness". Psychiatry who think everyone is mentally ill and don't even know how to define it?

Our societies really need to wake the hell up and take part in what they want the definition of "mentally ill" to be and not just sleep walk into this dystopian nightmare wherby the government has a massive PR campaign running on things like IAPT and "destigmatising" mental illness.

Are we going to end up with a version of John Prescotts "we are all middle class now", that proclaims "we are all mentally ill now", wherby psychiatry sits by and claims to be the only ones who are of sound mind and capable of understanding things?
 
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Lucibee said:
Press coverage: Daily Star have covered it, but half of the article is about Ricky Gervais...

https://www.dailystar.co.uk/news/la...Gervais-Fame-ME-joke-MP-Steve-Brine-Apologise
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Personally I think Rickey Gervais is the last of our worries and I don't want to see a twitter storm that brings in the whole world to turn it all into an even bigger joke and sidetracks the amazing work that was done yesterday.

A Twitter storm could take this off to a whole other direction like a "what about freedom of speech" angle or even worse. Also we will get trolled the hell out of.

Ricky Gervais is just a comedian who made an ill informed joke about disabled people because of people in the BPS crowd who ill informed the whole of society.
 
adambeyoncelowe said:
I think it's a good idea. A few Scottish publications ran articles in the run-up. The more organisations providing press releases, the more likely something is to stick. Also, as with the Parliamentary briefings, it at least means journalists can see a variety of views. That way they'd be less likely to just parrot the SMC view.
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I think it can be useful for MPs who participated to have positive stories that they are trying to help constituents and if we create positive stories for them that helps reinforce their help.
 
Lucibee said:
Press coverage: Daily Star have covered it, but half of the article is about Ricky Gervais...

https://www.dailystar.co.uk/news/la...Gervais-Fame-ME-joke-MP-Steve-Brine-Apologise
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Well that could have gone both ways but fortunately I think it went our way. Interesting to see the longer clip - Gervais doesn't look as bad in the longer clip as he is made to look in Unrest - he says he knows it's a physiological disease and not psychosomatic.

NelliePledge said:
I think as an ex journalist Steve Brine may have been aware of what he was doing
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Possibly, I don't pretend to know. My first idea was that he was too lazy to do his homework so just watched the film, and demanding an apology from Gervais was an easy way to be seen to be on our side without actually having to do anything. It nearly went horribly wrong (reading the tone of the Daily Star at the beginning of the article) but fortunately turned out well. If he knew what he was doing it was a pretty risky move to make on our behalf.
 
Adrian said:
Given he works for Oxford and it was written as part of his job (i.e. backing his research) I would question whether it should be private (at least I would have thought it would be subject to the FoI act).
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I agree. There's nothing private between a Professor and an MP, unless they agreed on it being private or there's a contract.
Probably Sharpe meant "I trusted CM to keep it private". Which is naïve.
 
Bill said:
I do wish there were chyrons with the names of the MPs, their districts, and their parties as the debate goes along.

As it is, the diversity in accents suggests a very wide geographical support from N. Ireland, to Wales, Scotland and England. And I've made educated guesses when it comes to the diversity of support across political parties.

This cross section of support seems so critical to carrying the day from my long-distance vantage point.

It is heartening!

Bill
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I noticed that - and was very pleased - and surprised - to briefly see my own Tory (Conservative) MP from North Cornwall (Scott Mann) - ask a question. He had previously said - or asked someone else to say - that he wasn't allowed to participate in such things due to his position.
 
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TiredSam said:
Well that could have gone both ways but fortunately I think it went our way. Interesting to see the longer clip - Gervais doesn't look as bad in the longer clip as he is made to look in Unrest - he says he knows it's a physiological disease and not psychosomatic.
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I think that he changed it after being contacted by patients. There was a blog somewhere that included a reply Gervais had written to the blog author. tbh, his reply probably made him seem worse, although it was good he took the time to respond. [My memory of it was that he just really didn't understand the issues at all, and seemed to start with a misguided assumption that as his intentions weren't bad, it must be okay, and anyone who disagreed must be misunderstanding his sophisticated humour & comic persona].

large donner said:
Ye, "I am going to insult you in a private correspondence but you are not allowed to tell anyone".
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LOL

"... and then claim that you took my comment unfairly out of context, but act like it's some how noble of me to not release the e-mail showing the full context".
 
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Personally I think that criticising comedians for being 'offensive' can easily back-fire.

For people interested in the context though, Gervais' full 'fame' special is here, with the ME bit from 21:30-29:00:

He moves on to talking about how you'd never have an African complaining of having ME, seemingly a reflection.

Here's a Jason paper on prevalence rates in Nigeria: http://journals.sagepub.com/doi/abs/10.1177/1359105307076233
 
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Statement from @The UK ME/CFS Biobank Facebook page.
Statement from Dr Eliana Lacerda, who attended yesterday's debate on behalf of the team:

"The MPs who participated in the debate were very consistent in reporting the huge burden of the disease and the need for better recognition of ME/CFS, education of health professionals and the public. There is a clear need for the development of clinical services and a benefits system that responds to the needs of people of ME/CFS, alongside funding of biomedical research.

We wait with anticipation for a positive response from the Government, with concrete actions and substantial changes to the current situation, that for so long has been so unhelpful to people with ME/CFS.”
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large donner said:
Personally I think Rickey Gervais is the last of our worries and I don't want to see a twitter storm that brings in the whole world to turn it all into an even bigger joke and sidetracks the amazing work that was done yesterday.
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This was exactly my thought. I didn't say anything about him yesterday because I was afraid of stoking the fire.

I think the minister played this up intentionally to deflect attention as it would be more newsworthy, and seems to have worked.

Any thoughts on requesting anything from Rickey Gervais should be dismissed.
Could so easily backfire spectacularly.
 
I actually think it's a cheek to even raise the Ricky gervsais thing and say he should give us an apology, it's irrelevant. It's not HIM I want an apology from or action from and then the minister proceeded to mainly defend the [[appalling]] status quo whilst jarringly quoting unrest as if he "really understood". Jessica in Bed for her birthdays, which he tied into home education, was nothing to do with education, in fact I very much doubt in most of those years Jessica could do any home learning it was the waste of life caused by there being no treatment, caused by no research.
 
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