"Time for Unrest": ME article by Nathalie Wright

Sorry to overwhelm you a bit more - it really is wonderful.

THANK YOU.

 

You deserve it! This is a terrific article, Natalie - thank you.

 

Good morning (for me), everyone. I'm glad to see @Nathalie Wright is receiving the accolades she deserves for this article. Yes, it is published in the print/paper version of The Independent. I was able to access it for free through my city's public library. It covers most of a four-page spread under "The New Review/The Big Read" in the January 7, 2018 edition.

On-line, several other news websites provide links to the Independent article, so it definitely is receiving broad coverage. For example:

http://www.york-me-community.org/time-for-unrest-why-patients-with-me-are-demanding-justice/
http://world.news.springhole.net/news/time-for-unrest-why-patients-with-me-are-demanding-justice
http://www.usvnews.com/time-for-unrest-why-patients-with-me-are-demanding-justice
http://enews.shafaqna.com/EN/AL/3539277
http://www.newslocker.com/en-uk/new...t-why-patients-with-me-are-demanding-justice/

The same issue of The Independent also carried an opinion from a doctor that may be of interest to our UK members. In the "Voices" section, the heading is "As a doctor, I recognise the NHS needs major surgery". Here are a few of this doctor's comments:

"The headlines are back – screaming that the NHS is “on the brink”, “on a cliff edge”, “on its knees”. . . . As usual, politicians argue that more money is being invested, while the department of health is wheeling out the same meaningless statistics.

Has nothing changed over the last few years? Quite a bit has, in fact: the population has expanded and demographics have changed, with most service users being elderly; people with long term illnesses are living longer; new diseases have evolved; . . .

. . . the NHS needs a strong political will, careful spending, the involvement of clinicians in decision-making bodies as well as a responsible attitude and realistic expectations from the public.

. . . The purpose of the NHS needs to be redefined so that it is fit for purpose in 2018. . . . It should stop being a social guardian and avoid moral policing

The captain of the ship must change immediately. In my view, the current person in charge does not have a vision or leadership qualities, has made no meaningful policies or change since 2010 and has instead contributed to the demonisation of doctors and alienation of the workforce

Politicians and media managers should be banned from spinning ill-conceived and poorly researched health-related statistics to further their own agendas. The concept of a targetdriven service should be completely abolished

Red tape and layers of management should be stripped back. For safe and effective delivery of services, every decision-making body should have clinical representatives who are always in a better position to understand NHS-related issues"

Sorry for not providing a link. I could find no way to do so without "blowing my cover". The portions I quoted seemed most applicable to NHS politics related to ME and other ill-served illnesses.

 

@Nathalie Wright I'd just like to add that your article is just what I need to pass on to other people. It's the most comprehensive, detailed but very readable, referenced article in a sensible newspaper that I've seen; that people (non sciencey healthies outside my family) might take on board.

I can use it to articulate what I don't have the clear brain and stamina to write myself.

Thanks, again

 

http://www.independent.co.uk/voices...y-disease-illness-waiting-times-a8145281.html

 

Just to clarify- has the Independent stopped producing a print copy or not in UK ?

I am glad to hear of a 4 page print copy from @MsUnderstood above, but is this in Canada only?

If not, and we have it in UK, I need to change my paper tomorrow.

https://www.theguardian.com/commentisfree/2016/mar/25/guardian-view-end-independent-in-print

http://www.bbc.co.uk/news/uk-35561145

 

@Binkie4 As far as I know, The Independent has never been published in Canada. I accessed it through "PressReader" on our library website. There are two formats available -- one that looks exactly like the printed newspapers "of old", and one that supplies individual articles according to the reader's interests. The former is what I saw, and for that reason I assumed it was actually being printed as such. It appears I was wrong, according to on-line articles from 2016. Sorry for the confusion I caused.

I agree with your last comment. While "virtually" flipping through today's edition of The Independent, I was impressed with the variety of timely and interesting articles. I, too, would subscribe if something like this was available here.

 

Thank you @MsUnderstood.

Many of us here in UK who were readers of the Guardian, may have been willing to move across to the Independent if there was a print copy.

Wonderful to read @Natalie Wright's great article in the online Independent - wish the Guardian would move in that direction.

 

Brilliant @Nathalie Wright. So much of this has been said in so many different places and so many different ways, but always bits and pieces here and there. You, crucially, pull it all together superbly here, with enough detail to provide the real picture, but keeping it comprehensible to most people.

I spoke to an ambulanceman some time ago, who I know is a really decent dedicated medical professional, yet he truly believes people 'claiming' to have ME are just pulling a fast one; when I asked why he thought that he said 'well you can just tell'. When I spoke of the issues with diagnosis, and people who have real ME, he found it amusing and said 'ha ha, "real ME", I like that ...'; I got a little frustrated at this point, and emphasised how my wife and I used to go on long walks over different parts of the UK, and how she used to run her own gardening business. At the end of our conversation I think I had convinced him to dig deeper, and look at Ron Davis' work etc. I know he's a good person, so his reaction proved to me how deep the prejudice runs.

I really, really hope he reads your article. Maybe he'll think "Oh, the PACE trial - that's what that chap was talking to me about". Maybe.

 

It says it has had 5K 'shares'. That sounds good, and looks like more than the other 'long reads' I clicked on. Great work bringing wider attention to this stuff. Brilliant.

 

A few people to reach out on twitter to (I cannot because I don't do twitter):

Code:

@skwawkbox
@Rachael_Swindon
@ScouseGirlMedia
@Dis_PPL_Protest
@AnitaBellows12
@WOWpetition
@chunkymark

 

Just noticed that there is a comment under the article by someone called " friendly cat" thanking Natalie and the Indy for the article, and asking if anyone was interested in asking the Guardian about their cosy relationship with the BPSers.

It had quite a few likes- would be good to see some more.

 

hi @Nathalie Wright ,

impressive! thank you!

as has been pointed out, this looks like an excellent article to point people toward. i was getting bogged down forever in deciding among various excellent articles that told part of the story or were not in major mainstream newspapers or journals. this covers severity, science, politics, history, misopathy, human interest, activism, and media. you used credible sources.

and no "tired-chick" graphic!

it is rare for smc to be mentioned critically in the media.

i wonder, what did you do to persuade the independent to run this story? do they have a great editor? will they now run those charts of funding levels and quality of life?

maybe this one will echo and echo.

[eta: spelled nathalie's name right]

 

Says it is up to 8k shares now, which seems a lot more than most of their long read articles.

I realise that it's probably not a lot compared to what you'd expect for some fun celeb story, but if people at your work had an article this critical of them get shared 8k times, there's a good chance that most of your colleagues would have had a look!

 

It is not how many you reach, but who you reach.

 

Much thanks to Ms Wright and the Independent for this excellent article.

 

Will the Queen read it? Maybe she'll tell young Harry to stop larking around with silly Mr Wessely. Such a bad influence.

 

Are we to expect the Independent to give an article over to the BPS crows now in the, "interests of balance"?

 

Sorry to taint this thread with the words from Wessely but he responded to a tweet from @Grigor with this
https://twitter.com/user/status/950672718181040129


Link from the tweet - http://www.simonwessely.com/Downloads/Response to Natatlie Wright.pdf