Cosmopolitan: Millions of Women Suffer From a Disease That Virtually Sucks the Life Out of Them

[Demepivo]

Looks like that's where she started:

View attachment 24274

Yes, only seen Hilary Johnson at a distance but she seems keener to promote herself rather than the science or fellow patients

I don't think it's worth being pernickerty about details like dates in a Cosmo piece, especially when it's so positive.
Runs the risk of feeding into the touchy ME brigade myth in my opinion.
A science paper or a broadsheet newspaper is a different matter.

Agree, some advocates forget to say well done and go straight to self important pedantry.

 

[Snow Leopard]

I don't think it's worth being pernickerty about details like dates in a Cosmo piece, especially when it's so positive.
Runs the risk of feeding into the touchy ME brigade myth in my opinion.
A science paper or a broadsheet newspaper is a different matter.

Agreed.
The statement is not entirely wrong, the name and disgnosis "ME/CFS" did indeed emerge in the 80s.

Articles in mainstream media are usually complete rubbish. This is a decent article.

 

[Cinders66]

Yes, the author deserves a plug for her forthcoming book.



Hopefully she gets to do a book tour with the same or bigger reach as the one that neurologist did - Suzanne O'Sullivan, with her book 'It's All in Your Head'.

To be honest I think there's an appetite for the oddity of patients severe symptoms seemingly originating from their minds, including from the chattering classes, less so for a book critical of the medical profession and saying women are getting an unfair deal. It's good that we are seeing this kind of press though and it might continue with lady gaga going public about fibro, also neglected and maligned

 

[Invisible Woman]

I agree @Cinders66 .

I also think that if more women realized the extent of the discrimination that still faces us when we become ill we could re-educate their palates.

This Cosmo article is a great start. Even if it just plants a seed into the minds of some of it's subscribers that might make them more receptive/curious down the line.

ETA to correct an autocorrect.

 

[lilpink]

Looks like that's where she started:

View attachment 24274

Well she didn't read the whole book then!

 

[lilpink]

Agree, some advocates forget to say well done and go straight to self important pedantry.

It matters.

 

[lilpink]

Same author: https://psmag.com/social-justice/is-medicines-gender-bias-killing-young-women#.58nfvzst4

 

[Invisible Woman]

Same author: https://psmag.com/social-justice/is-medicines-gender-bias-killing-young-women#.58nfvzst4

You do/don't like this article?

I thought it was good.

Sometimes you have to write your article for your target audience - the Cosmo level article is good in terms of its audience in my opinion, but it's not an in depth,weighty, discussion piece.

There are some excellent & very factual papers written by the likes of Tom Kindlon, Keith Geraghty and others. Even if you could get 'em printed in Cosmo I'll bet the majority of readers wouldn't go beyond the 1st paragraph.

Not through lack of intelligence. Just simply because that's not what they read Cosmo for.

 

[lilpink]

You do/don't like this article?

I thought it was good.

Sometimes you have to write your article for your target audience - the Cosmo level article is good in terms of its audience in my opinion, but it's not an in depth,weighty, discussion piece.

There are some excellent & very factual papers written by the likes of Tom Kindlon, Keith Geraghty and others. Even if you could get 'em printed in Cosmo I'll bet the majority of readers wouldn't go beyond the 1st paragraph.

Not through lack of intelligence. Just simply because that's not what they read Cosmo for.

I'm ambivalent atm. Not due to content per se (after all she is actually making the argument, in part, for huge swathes of MUS / gender bias information I have posted to PR elsewhere) but because I don't know enough about the author and her own MO. Clearly Hillary Johnson has found some of her methods less than edifying. I remember that 'we' as a community have been burned too often by swallowing up people as 'saviour figures' etc when we later discover that there are issues which render them less than useful, in fact sometimes quite toxic. I'm not saying this is necessarily so with this author but her sloppiness in terms of accuracy of content plus her lack of graciousness in properly crediting another author (not to mention that the author she didn't properly credit would have provided the context had she indeed read her whole book) means I'm cautious.

Fwiw I don't see PR as a portal to congratulate any particular author. Surely it's a medium for discussion amongst patients..so congratulations are not the first thing on my mind in this context? Accuracy is what I care about. How I respond, in an advocacy sense, to an article (or similar) in its own appropriate portal requires a different discipline.

 

[Invisible Woman]

@lilpink

I don't know that much about the author and I simply think that, given the target audience, both articles were good. This doesn't mean that I will like her other articles and nor is it a comment on her professional ethics. I certainly do not view her as a saviour figure nor do I condone her not crediting the original author. I don't know if she's kind to animal or not, how she votes or anything else about her.

It's horses for courses as far as I'm concerned. I applaud advocacy and the holding to high standards etc. but if you try to hold everyone to such a high standard, all the time, about everything, then you may end up alienating people who may be helpful (albeit in minor ways) further in the future.

 

[lilpink]

@lilpink

I don't know that much about the author and I simply think that, given the target audience, both articles were good. This doesn't mean that I will like her other articles and nor is it a comment on her professional ethics. I certainly do not view her as a saviour figure nor do I condone her not crediting the original author. I don't know if she's kind to animal or not, how she votes or anything else about her.

It's horses for courses as far as I'm concerned. I applaud advocacy and the holding to high standards etc. but if you try to hold everyone to such a high standard, all the time, about everything, then you may end up alienating people who may be helpful (albeit in minor ways) further in the future.

I wasn't trying to get at you in my reply at all, I get the sense you might have thought I was...

Having said that, personally I think not having high enough standards and settling for crumbs has been our downfall. Yes I demand a lot ... if 'a lot' is basic 'honesty and decency'. I won't mention the names of people who have fallen very far short of the hopes that were rested in them but I think we can all conjure up a few. I don't expect people to be perfect (quite ) , but I bide my time these days. For some reason (not hard to fathom) I have a mental image of the clergyman in Jamaica Inn as I write this! Not everyone is quite as they seem.

I agree that given that target audience the articles weren't bad. But I still don't understand why a major publisher such as Cosmo has published an article which has used un-cited work from another author. That's pretty badly done by anyone's standards, and that leads me to be cautious on top of the obvious factual flaw. I know we all know media is heavily flawed and honest mistakes muddle together with laziness and downright fabrication, but just because it is so doesn't mean we should accept it without comment and indeed censure. Since when has this become acceptable?

I daresay I do alienate some people on a personal level, I'm too old to care much about that now. Also too long in the tooth of this disease to feign politesse when straight talking is wanted. In terms of adroit advocacy I'd like to think that in my peculiarly strident way I do reasonably well. Sometimes a gobby old mare gets more done than being overly ingratiating. One observation I would like to make which seems apposite here is that I have noticed a change of tone in some of the advocacy statements being made by Invest in ME lately. IinME have always been on point but now there is a real challenge in their delivery..a ratcheting up of the righteous anger to which we all should surely be entitled? I like that change of tone. It's good. They're using their platform with a temper the patient charities should have channeled but haven't. Gold star to them.

 

[Invisible Woman]

I don't have any problems at all with gobby old mares... when it serves I am one.

In my life I have had to stand up for myself. I have had to deal with sexism (beyond the norm because of my chosen career) and racism.

In the last 20 years I have also had to face some extreme prejudice because of my diagnosis - no way of walking away from it.

I understand the impact of advocacy and have had my own personal situation made much worse by those who claim to be fighting our cause but really are stabbing us in the back. I suspect we could all name culprits there.

I have learned that there are many ways to fight a battle. In fact, it can even be best to play a long game and not engage straight away. Choose your battle strategically. Sometimes a polite smile and gentle words work best, sometimes you need to be gobby.

I have also learned that you can't always deal with all the world's ills in one go.

I suspect we're more alike than not @lilpink.

 

[Snow Leopard]

I agree that given that target audience the articles weren't bad. But I still don't understand why a major publisher such as Cosmo has published an article which has used un-cited work from another author. That's pretty badly done by anyone's standards, and that leads me to be cautious on top of the obvious factual flaw. I know we all know media is heavily flawed and honest mistakes muddle together with laziness and downright fabrication, but just because it is so doesn't mean we should accept it without comment and indeed censure. Since when has this become acceptable?

Lack of citation certainly annoys me, but it's par for the course in mainstream media which has very poor standards.

 

[lilpink]

I suspect we're more alike than not @lilpink.

Sounds like it

 

[Hajnalka]

It's so sad how hard it is to battle the stigma and prejudices. The thread of this twitter feed is so annoying - at first everybody is convinced it's depression, several people suspect it's pregnancy and a lot of people conclude it's just how life always feels like. Plus of course the usual recommendations to chill out, do acupuncture or have sex. I wonder if people would react like this, if it was about a mystery disease that can affect anybody anytime called e.g. Ramsey disease (instead of chronic fatigue syndrome).
Or maybe this is just the usual way people on the internet judge sick and "weak" people? Maybe articles on other illnesses get similar ableist comments, don't know.

https://twitter.com/i/web/status/915665887595831296

 

[TiredSam]

The thread of this twitter feed is so annoying

Maybe that's just what's to be expected from a combination of Cosmopolitan readers and Twitterers. Seem to be a few men on that cosmo twitter feed who are just there to troll. They must have a lot of time and no life. I know that describes a lot of us too, but what's their excuse?

 

[HowToEscape?]

I noticed that too but don't have a more accurate date. Perhaps worth finding it and e-mailing the author who could publish a correction

The name "Myalgic Encephalomylytis" stems from Dr Melvin Ramsey's investigation of a mysterious outbreak at Royal Free Hospital in 1956. It's no secret, even Google or Wikipedia will bring up Ramsey if M.E (spelled out) is entered as a search term.
otoh, expecting such a degree of effort (extra keystrokes, ten minutes, oh my!) from any form of mass media is not realistic.

 

[slysaint]

The name "Myalgic Encephalomylytis" stems from Dr Melvin Ramsey's investigation of a mysterious outbreak at Royal Free Hospital in 1956. It's no secret, even Google or Wikipedia will bring up Ramsey if M.E (spelled out) is entered as a search term.

This does bug me a bit when some imply "it's a bit of a mouthful so let's not use it". So are the names of a lot of diseases (you only have to watch an episode of Doc Martin!).

Acute disseminated encephalomyelitis (ADEM) is a disease and you don't hear people saying 'ooh dear what a complicated name, lets call it chronic aching syndrome'.

Similarly when they say M.E. is 'too precise' ; there are loads of diseases whose names do not 100% relate to what's going on in the disease.

The other thing I've noticed with reporting in the US, they say that the name M.E. is the new name for chronic fatigue syndrome; it wouldn't take much searching to find out that it's the other way around.

Do these journalists ever look things up?