Sam Cam’s sister stricken with M.E. for a year | Daily Mail | 27 June 2015

[Valentijn]

The only fail here is in the so-called impartiality of this forum. It's perfectly possible to discuss the issue without resorting to insults

What's-her-face (I really don't know her name, nor care enough to find it), has chosen to publicly spread harmful misinformation about a disease. It is likely that she does not know it is misinformation, but that is because she couldn't be bothered to learn a single damned thing about the disease she claims to have had.

If more people like her spent some time educating themselves, and less time showcasing their ignorance, the world would be a far better place. But they don't do this, so we get subjected to a battery of smug comments from her and people like her who have been cured by shaking off their "fatigue" and having the supposed moral fortitude to succeed where the weaker-willed fail.

It's an extremely harmful narrative, especially when publicized by anyone with any social influence. It perpetuates the trivialized perception of ME, and it is not acceptable.

 

[Keela Too]

Trouble is that ME diagnoses are often given out to people with plain ole burnout or life fatigue. Sure then a wee holiday in the West of Ireland and a refreshing dip in the ocean might well put one back on track!!!

It is not the individual's fault they got told they had ME (by a medical professional no doubt) when in fact they had something else.

However as @Valentijn says their narrative - especially when so widely publicised (because the person is linked to some-one in the public eye) - is extremely damaging.

I wonder if this is why some medical professionals continually muddy the ME - CFS thing? Call every one with CF (of any type) an ME patient, and eventually their "recovery" stories are bound to show up simple life-style changes as "key"....

In doing so genuine ME patients are made to look simply lacking in motivation to recover.

 

[Undisclosed]

The only fail here is in the so-called impartiality of this forum. It's perfectly possible to discuss the issue without resorting to insults

The only 'fail' here is that you are mistaking my own personal opinions as the formal stance of Phoenix Rising. I am allowed to have opinions as a member that have nothing to do with Phoenix Rising, the organization.

READ MY SIGNATURE

If Phoenix Rising were to take an official stance on the Daily Mail, would it be appropriate for PR to endorse the following articles as being of benefit to people with ME and/or representative of our members in the name of 'impartiality'.

Chronic fatigue victims 'suffer fear of exercise': Patients are anxious activities such as walking could aggravate the condition

Read more: http://www.dailymail.co.uk/health/a...vities-aggravate-condition.html#ixzz3flinNr5j

Got ME? Fatigued patients who go out and exercise have best hope of recovery, finds study

Read more: http://www.dailymail.co.uk/health/a...-hope-recovery-finds-study.html#ixzz3fljuR3oL

Scientists investigating ME get 'death threats' for investigating psychological causes

Read more: http://www.dailymail.co.uk/health/a...ating-psychological-causes.html#ixzz3fluaVOuy

Could ME be caused by too much adrenaline?

Read more: http://www.dailymail.co.uk/health/article-427537/Could-ME-caused-adrenaline.html#ixzz3fmDrsaQ8

http://www.dailymail.co.uk/health/article-434248/Saved-living-death.html

How to beat chronic fatigue... by learning to hold your breath

Read more: http://www.dailymail.co.uk/health/a...tigue-learning-hold-breath.html#ixzz3fmEdDJOM

Why on earth should any ME organization 'impartially' endorse articles that promote exercise, CBT, GET, LP, yoga, and accusing people with ME of being a bunch of aggressive terrorists. As far as I am concerned I am allowed to have an opinion whether or not I am a moderator and in this case, I think my views are in line with most members here == we are sick and tired of the shit that gets published in rags like the Daily Mail that misrepresents ME patients and ME research and in addition is derogatory, derisive, and basically useless.

Let's talk about the Daily Mail -- what a wonderful online paper it is -- big headlines:

'Cack-handed' counterfeiters are caught when they try to buy £3 of biscuits with fake £20 they made with a printer and A4 paper

http://www.dailymail.co.uk/femail/a...t-16-stone-wedding-swapping-KFC-weetabix.html

It's deserving of the name Daily Fail - that's my opinion, not the opinion of PR. I personally believe that if one is looking for serious, well-reported, well-researched news, the Daily Mail is not the go to paper. We need serious press time by serious newspapers. We don't need press time from a newspaper that has a history of treating people with ME with derision, misrepresenting the disease as fatigue, making people think cures are possible via yoga, cold seas, LP, CBT etc,.

Would it be so bad for PR to take the stance that papers such as the Daily Mail need to stop publishing damaging stories that make us all look lazy, crazy, and a whole bunch of other stigmatizing things. It promotes CBT, GET, LP, Yoga etc as cures. Really, this stance is not okay for any organization to take -- we need to promote science, research, proper advocacy. I think if members voted on what official stance they wanted PR to take, I very much doubt it would be to support ridiculous stories published by the Daily Mail in the name of "impartiality".

I believe that people with ME should be biased against those people and newspapers that provide false and damaging information that stigmatises us. There are times we need to throw impartiality out the window and totally be biased.

 

[Marco]

Let's talk about the Daily Mail -- what a wonderful online paper it is -- big headlines:

'Cack-handed' counterfeiters are caught when they try to buy £3 of biscuits with fake £20 they made with a printer and A4 paper

http://www.dailymail.co.uk/femail/a...t-16-stone-wedding-swapping-KFC-weetabix.html

It's deserving of the name Daily Fail - that's my opinion, not the opinion of PR.

What has this story got to do with ME/CFS?

 

[Undisclosed]

What has this story got to do with ME/CFS?

Nothing -- it was to point out the kind of important 'news' stories the Daily Fail posts. It's called sarcasm,

 

[Marco]

Nothing -- it was to point out the kind of important 'news' stories the Daily Fail posts. It's called sarcasm,

It's also called cherry-picking. No doubt you missed the also irrelevant recent story that the UK government may now be forced to take action after Daily Mail undercover reporters found evidence that leading UK charities are using dubious cold calling practices targeting the elderly and other vulnerable people :

http://www.dailymail.co.uk/news/art...oom-tactics-targeting-elderly-vulnerable.html

Rather more worthy don't you think?

Talking of cherry picking, that was an interesting list of Daily Mail stories relating to ME/CFS. You seem to have missed these ones :

Chronic fatigue IS 'a real and serious disease': Doctors draw up new guidelines on how to diagnose the condition

http://www.dailymail.co.uk/health/a...s-draw-new-guidelines-diagnose-condition.html

'I'd rather have CANCER than chronic fatigue syndrome'

http://www.dailymail.co.uk/health/a...ople-unfairly-labelled-attention-seekers.html

Proof at last that 'yuppie flu' is a real illness: Study finds chronic fatigue commonly seen among professionals is not just in the mind

http://www.dailymail.co.uk/health/a...ommonly-seen-professionals-not-just-mind.html

Is this proof chronic fatigue DOES exist? Scientists find three differences in the brain that suggest condition may not just be 'in the mind'

http://www.dailymail.co.uk/health/a...es-brain-suggest-condition-not-just-mind.html

etc ...

But it doesn't take much effort to find a remarkably similar list of stories to yours published by The Guardian :

Chronic fatigue syndrome patients’ fear of exercise can hinder treatment - study

http://www.theguardian.com/society/...ients-fear-exercise-hinder-treatment-study-me

Don't let chronic fatigue stop you going to university

http://www.theguardian.com/education/2014/dec/29/neurological-disease-at-university

Chronic fatigue syndrome researchers face death threats from militants

http://www.theguardian.com/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis

Study finds therapy and exercise best for Chronic Fatigue ME

http://www.thefooddoctor.com/Article-Ahealth_press_chronicft/ ('The Food Doctor' FFS?).

So we have a mass market tabloid (or 'rag' as you would have it) publishing trash stories about ME/CFS and a supposedly respectable paper also publishing trash stories about ME/CFS. Who would you consider more culpable? Maybe you can come up with a cute derogatory name for the Guardian while you're at it?

More generally it's clear to me that positive stories about ME/CFS are few and far between in the UK national press and the vast majority of stories are either 'planted' or picked up from agencies.

Rather than griping about the coverage or singling out one particular 'rag' for crtiticism perhaps we need to think about being more proactive in getting the hacks better informed outside of what they're fed by the SMC.

I believe that people with ME should be biased against those people and newspapers that provide false and damaging information that stigmatises us.

Looking forward to it!

 

[Undisclosed]

@Marco

The OP was posting an article that appeared in the Daily Mail. The Guardian isn't relevant to this thread and yes they have printed their share of crap too as have many newspapers in the UK.

Rather than griping about the coverage or singling out one particular 'rag' for crtiticism perhaps we need to think about being more proactive in getting the hacks better informed outside of what they're fed by the SMC.

This thread is about a pariticular article in a particular online newspaper and is deserving of criticism in its own right. If you wish to discuss other matters re: the Guardian, the SMC, then you really should start a new thread.

Thank you.

 

[Marco]

@Marco

The OP was posting an article that appeared in the Daily Mail. The Guardian isn't relevant to this thread and yes they have printed their share of crap too as have many newspapers in the UK.



This thread is about a pariticular article in a particular online newspaper and is deserving of criticism in its own right. If you wish to discuss other matters re: the Guardian, the SMC, then you really should start a new thread.

Thank you.

Kina. Thank you. That's exactly the point I was initially making. Let's discuss this particular story on it's merit's/demerit's without resorting to 'what would you expect from the 'Daily Fail'.

Not only are your or my personal views of any particular paper irrelevant but they are also extremely off-putting to those not sharing those views.

Now how about some discussion on how we might constructively engage with the press?

 

[Undisclosed]

Thank you. That's exactly the point I was initially making. Let's discuss this particular story on it's merit's/demerit's without resorting to 'what would you expect from the 'Daily Fail'.

Not only are your or my personal views of any particular paper irrelevant but they are also extremely off-putting to those not sharing those views.

Sorry @Marco

I have to move on from this, it really is taking the thread off topic and taking up far too much of my time.

I think it's important for members to be able to voice their dissatisfaction with an article and the newspaper that published it without being chastized for doing so. It is beyond me why you can't seem to see that the Daily Mail is at fault here for continually publishing articles that do nothing other than make us look lazy, stupid, that demean us, etc. The Daily Fail needs to be thoroughly criticized in this respect. It's sad that you appear to support a newspaper that does this. I can't fathom why a person with ME would support a paper that pumps out such crap. They have been told over and over by hundreds of patients in their comments section re: what is wrong with their press coverage, yet they continue to do it. They do the stories because it attracts controversy which attracts more readers which means lots more money for them. They deserve to be criticized.

I think there is already a thread that Sasha strarted that has to do with engaging with the press. This thread is about a particluar story published by a particular newspaper and members can discuss what they think about it and everybody's viewpoint is relevant.

 

[Marco]

Sorry @MarcoI can't fathom why a person with ME would support a paper that pumps out such crap

Maybe because I refuse to let my life be defined by this illness but I get it. You don't like the Daily Mail.

 

[Undisclosed]

Maybe because I refuse to let my life be defined by this illness but I get it. You don't like the Daily Mail.

My life isn't defined by this illness either, though it does make up part of it. To deny that would be to ignore reality.

I guess if you want to support the abuse of ME patients by posting support for agencies that consistently abuse patients, thats your perogative. I dislike the Daily Mail because I simply can't like an agency that abuses ME patients on a consistent basis especially when they know they are doing so. It's that simple. To be told to not discuss it is puzzling. To be repeatedly criticized for it is puzzling.

 

[Marco]

I guess if you want to support the abuse of ME patients by posting support for agencies that consistently abuse patients, thats your perogative. I dislike the Daily Mail because I simply can't like an agency that abuses ME patients on a consistent basis especially when they know they are doing so. It's that simple. To be told to not discuss it is puzzling. To be repeatedly criticized for it is puzzling.

How bizarre!

 

[Aurator]

Let's discuss this particular story on it's merit's/demerit's

It has merits?

Not only are your or my personal views of any particular paper irrelevant but they are also extremely off-putting to those not sharing those views.

Nine tenths of what gets printed in a newspaper is personal views. Nine tenths of what gets posted on PR is personal views. If I didn't want to be put off something by reading other people's personal views I simply wouldn't read it.

Leaving aside your later comments, I suspect I'm not alone in finding it a little hard to understand your reasons for choosing taking the stance you did in post #74. Your reproof arguably caused more real hurt than the comments you were objecting to.

 

[Seanko]

Take everything reported in the Daily Mail with a pinch...no bag of salt.

There is one good thing to come out of it. Samantha Cameron has supported Action for ME by hosting a reception at 10 Downing Street (The British Prime Minster's residence), guest of honour was Prof Julia Newton of Newcastle University who is one of the country's foremost ME/CFS researchers & clinicians.

Lobbying is important...