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Guardian article: ME affects four times as many women as men. Is that why we’re still disbelieved?

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1,055
Thank you for a well written article @harveythecat I think the gender angle brought more readers to the piece than would normally read an ME article. The usual crowd who pile into the Guardian comments section bear pit to snipe about anything gender politics related are being educated.
I think you've done really well to get so much content and so many links into a comment piece, get it through editorial and published today - perfect timing!
 
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87
Trust me - we're on the same side. Like I say, am trying to get a longer article out there. I'm v tired after the protest today so don't really want to be defending myself online after working so hard to be honest!

Just want to say another well done on content and timing. Hope you can follow up with more when you can. There is so little in the UK news about the PACE data and its hard to understand why that is.
 

eafw

Senior Member
Messages
936
Location
UK
As a woman, I am extremely familiar with accusations of hysteria that permeate a woman's encounter with the medical system and I am not dismissing this.

Calling it "gender victimhood" is dismissive. It's the sort of language that belongs in the same pile of trash as "vexatious activists"

I just think that a bulletproof fact-based argument against the psychosomatic treatment of ME/CFS which has been put forward by the authors of the Virology reanalysis of PACE would have been 100x more persuasive to neutral people reading this piece, had it formed the basis of the article, than less strong / more subjective arguments about gender discrimination, that's all.

The Guardian article was written by a patient who writes from a personal point of view on the the illness, it's going to be informed by her personal experience. I don't hold her accountable that the newspaper wanted this "softer" spin on it.

The fingers do need pointing at he commissioning editors and so-called "professional" journalists who are ignoring the main story that keeps being buried in the background. I wonder for example if anyone has spelt out to them the parallels to the Andrew Wakefield/MMR case - and the glaring differences, with PACE the powers that be have pretty much closed ranks on trying to sweep the whole thing under the carpet.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
Lets consider how we end up with some people in 2016 only now recognizing that CFS is more prevalent in women for organic disease reasons:

What prevented this knowledge previously? I will argue it is rampant sexism, and before someone accuses me of being a rabid feminist, I'm not. This is not an anti male post, it's a reflection on the history of psychiatry that blames women for unexplained symptoms and the unfortunate truth is, men did this to not only women, but all of us (men have CFS too). This 'mistake' of gender differences in biology being confused for proof psychiatry is 'right', goes back hundred's of years. Hundreds of years ago, doctors were rarely female. Times have changed, women's roles in society have become more equal, but time can betray humans future - our future.

My experience (others may differ) is sexism is still rife among psychiatrists, because they still blame this idea of 'weak minded women prone to hysteria'. Heart sink patients able to develop any malady humanely possible, more likely than men - so a Women's complaint. CFS is thus ripe for this accusation, because they observe less men have CFS than women - confirmation bias then convinces them, they're correct!

This grave error, arguably comes from reading 'history' of psychiatry, which makes presumptions on symptoms based on unproven hypotheses. Hence Women, get a bad reputation for practically anything 'unexplained', because they are ''emotional creatures prone to stupendous outbursts'' - writes a man, in 1841.

They then bring these presumptions of Women and transfer them into CFS with a modern medicine overlay. Instead of recognizing (the are qualified MD's after all) that autoimmune diseases are more prevalent in females, they think, ohh yes, this CFS idea must be a functional somatic syndrome and if we find it in a boy or male, the mother has probably 'enabled him'. (Women blamed again) because it's unlikely a non bullied at school male could develop CFS.

So you can't win either way, because they flood the media with their delusional ideas about CFS and the public are influenced and see ME CFS is a women's disease, because, weak minded rich white women feel tired a lot. So the patients are then seen in society, in some way, deserving of their own fate both by the general public and the wider medical professional who become infected with sexist ideology, that 'worried middle class women' worry themselves into CFS.

In addition, the sexism I have encountered is so bad, that I get my dad to deal with my health, either because they are just plain rude to my mother (believing she makes me ill as she 'believes' in ME CFS) or because they give me a more fair hearing when dealing with a man.

And the most worrying part of this? It's women doctors doing this as well. Women being prejudiced against other women (because they have CFS) or they have a child with CFS, because of what they read in psychological journals about the 'roots' of ME CFS.

By governments dictating psychiatry as the captain of good ship ME CFS,we are being governed and herded into medical oblivion, by unintentional traitors.

When biomedical researchers are permitted to be funded, we then find out, that it's autoimmunity that explains the gender differences, what real Scientists could have told you probably decades ago, had they been allowed to influence research rather than be stonewalled out of the plot, sorry, I mean plan of evidence based clinical management for ME CFS.
 

Yogi

Senior Member
Messages
1,132
Well done @harveythecat. One in the Telegraph and now one in the Guardian!!

Good to see the links that you managed to drop in the article.

Hopefully this will be the first of many articles in the UK mainstream media criticising the PACE trial. Would be good to find out, whenever you are able after you have recovered, whether the UK mainstream media would be open to further more detailed articles in the main front cover or science section on the full investigative scandal of ME research and the fraud of the PACE trial or whether that is too difficult and hot for them to publish and there is some push-back on that from vested interests such as SMC. Just asking if you had any knowledge with your contacts in the media.

Hope you had a good day at the protest in London and doesn't affect you too much in the next few days.

Check out her tweets here:

https://twitter.com/_NathalieWright?lang=en-gb
 
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JES

Senior Member
Messages
1,320
Who decided that gender should be the leading theme of the article, as opposed to, say the medical mistreatment of patients due to Get, and PACE. PACE is after all the focus of international and unreserved discrediting, by highly qualified international scientists, and a lot of them. The vast waste of money by queen mary uni is also a scandal, and storyworthy. How can there not be a story there.

I bet the article would never have seen publishing daylight if the leading theme was about GET and PACE. Sad but probably true. I think this is the best way to start, having PACE mentioned in a subsection. The big media houses still rather see articles about "soft topics" than something that goes to criticize "established" science. I think it will still take a few years before the criticism of PACE becomes mainstream and accepted in these type of media.
 
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1,055
I will argue it is rampant sexism, and before someone accuses me of being a rabid feminist, I'm not. This is not an anti male post,
Just to pick you up on a little point - feminism isn't anti male it is about equality of the sexes.
Many years ago I said pretty much the same thing ("I'm not a feminist") to a friend who relied "So you think women shouldn't be equal to men? Women shouldn't have the same rights and pay and respect as men?" and I realised I'd fallen for the spin that had turned the word feminism into a dirty word that meant 'man hating'. Much the same spin that has turned ME into 'yuppie flu' or 'hypochondriac'.
 

worldbackwards

Senior Member
Messages
2,051
Just read this. Great overview, plenty of links to important research, sexism angle to the forefront but not really overplayed (because it's true). Not sure what people are whining about, other than that they like to whine.
 

Glycon

World's Most Dangerous Hand Puppet
Messages
299
Location
ON, Canada
Just read the top 20 comments or so. As of THIS MOMENT, there are three comments that would be unpopular on these forums, but all three make sensible (even if incorrect or irrelevant) points. One is basically "ME is a misleading name, yay SEID!"; another makes sensible points about the interactions between the physical and the psychological; the third one is from a patient who claims to have benefitted from GET, but is careful to point out that he wasn't cured.

I'd say discussion is going pretty favorably...
 

Glycon

World's Most Dangerous Hand Puppet
Messages
299
Location
ON, Canada
Typical Guardian. The reanalysis of PACE data which showed no increase in recovery rates from CBT/GET got one sentence while the rest of the article focused on gender victimhood.

Not only that, but in spite of this focus it failed to consider the other side of the sexism problem. Sexism, or, to be more precise, pressures from traditional gender roles, is almost certainly why there are four times more females being diagnosed with this illness.

Women face prejudice from their doctors and from society once they are diagnosed, while men often don't get diagnosed at all - either because they are reluctant to seek help or because they get misdiagnosed with something more "real" and "respectable".
 
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1,446
@Glycon

I have often wondered if it is the case that men are less likely to be diagnosed with ME due to doctors being told there is a female predominance.

After diagnosis, it seems that men and children of both sexes are constructed by medics as surrogate females, perceived as over emotional, catastrophising etc etcc etc.

Though the sexist attitudes from doctors towards females do not begin after diagnosis, many females have such delayed diagnoses due to being habitually written off as hysterical, menopausal (even when way too young for that) etc etc ... there are lists of shocking statements to ME females from doctors who come across as prehistoric in their brazenly sexist attitudes and statements.

It has been noted that ME has not been viewed as a feminist issue outside of the ME activism world. There is far far more concern, respect for, and good understanding of ME, and the medical and social injustices the patients are subject to, in the current UK disability rights movement than in the greater feminist world ..... the only significant feminist critique about ME medical/political issues has come from inside the ME activism world (academics Angela Kennedy, and Mary Schweitzer for example)



.
 
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JamBob

Senior Member
Messages
191
@harveythecat Great article - thanks for writing it and getting it published in a big newspaper.

Personally I think the sexism angle is warranted because:

a) It's undoubtedly a perpetuating factor behind why the disease is not taken seriously.

b) gender issues fit with the Guardian editorial aims so mentioning gender in the article will make the article more attractive to the people making editorial decisions.

c) It allows the article to reach a wider audience. An article in the science section gets fewer views and fewer comments (unless it's about homeopathy).
 

Glycon

World's Most Dangerous Hand Puppet
Messages
299
Location
ON, Canada
I have often wondered if it is the case that men are less likely to be diagnosed with ME due to doctors being told there is a female predominance.

I was just looking at a recent review article, which implies that the discrepancy worldwide is about 2:1, as opposed to the 4:1 we see in the UK. Attributing this to more rigid attitudes about social roles (including gender roles) in the UK is quite tempting, at least prima facie...

the only significant feminist critique about ME medical/political issues has come from inside the ME activism world.

But... but... what about Elaine Showalter??? :p
 
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1,446
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Dont talk to me about Showalter, or the disgraceful absence of critique of Hystories from academic feminists. So much for sisterhood. Again, the only significant critiques of Hystories was from ME advocates Kennedy and Schweitzer.
.
 
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Chrisb

Senior Member
Messages
1,051
After diagnosis, it seems that men and children of both sexes are constructed by medics as surrogate females, perceived as over emotional, catastrophising etc etcc etc.

Where is the evidence for that? I have never heard of any suggestion to that effect.