"Time for Unrest": ME article by Nathalie Wright

I came onto here to join in the discussion about this article from the Independent (having previously been on PR and recognising some 'faces' around here already!)...I'm not sure why I only just saw the article floating through facebook seeing as it was published on the 6th, but as I read it I really thought wow - it must be the first time all of the essential structure to the UK based problems have been published in a mainstream media outlet? Even the insurance angles! I could barely believe it...I was expecting it to end but it just kept going deeper lol...

My only sadness was this line: "ME, like autoimmune diseases, mainly affects women and is often developed in the prime of life, though children are also affected. "

Whilst its broadly correct, lets not forget us guys out there - still 50k odd in the UK! ...I feel a bit reluctant to share with my friends because it sort of edits me out of the conversation...

 

Welcome to S4ME @MESteveW

Personally, I don't have an issue with the wording and was happy to share it. After all, the quote is "mainly affects women and is often developed in the prime of life, though children are also affected.", which clearly shows that men are affected.

 

fair enough! I've read and enjoy Nathalies other articles including the one posing the question of sexism potentially having an impact in the situation, which I agree with and have heard shocking reports of anecdotally...but still yes for me I would like the guys to also be counted in the narrative especially when there is such a good article overall. By counted that could be literally like saying 'ME affects 4:1 women to men like many other auto-immune diseases etc'...

 

yes thank you Jonathan!

Can we please do this!!!

 

I would say that it is true that it mainly effects women, and as long as the word 'mainly' or synonyms are used, it shouldn't affect us.

(It also makes the wandering womb hypothesis extra silly. I wonder where it wandered from?)

 

If my waistline is anything to go by, I appear to be in receipt of several other people's wandering wombs

 

Do we know what the male to female ratio is in our membership here at S4ME?

 

Male: 179
Female: 331
Unspecified: 140

 

So 2:1 ish. And only rising to 4:1 ish if all of the unspecified members are female. Interesting.

 

Or 1:1 if all of the unspecified people are male

 

My recollection of the late 1980's is that it was thought that there was a roughly equal split of males to females in the sudden onset category, and higher ratio of females to males in the slow onset. I don't know whether this was valid research or whether it has been corroborated.

 

As a slight sidetone - I would suggest that in the current climate, framing the poor treatment of ME/CFS as a feminist issue is actually a good idea. Certainly I think that it's meant that more sympathetic articles have been published in women's magazines, which can only be a good thing. If someone sees it as a great injustice against one gender and acts accordingly, then both genders benefit from it anyway.

 

I completely agree, that also made me wonder though if it would be possible to get some sort of article in something like Men's Health - at a guess it would perhaps need to be along the lines of "feel like you have over-trained but rest doesn't relieve it? It may just be ME", and could then go into the fact that while most sufferers are women, there is still a substantial male patient population, and how being macho about it won't help. Just a thought.

 

I didn't specify (cause I'm an awkward cuss) but I can confirm I am female so:
Male: 179
Female: 332
Unspecified: 139

I daresay that doesn't really help tho' !

 

Given your username I assume its an implied covenant?

 

A very good one.

I read an article in a magazine about a guy who had breast cancer. How the assumptions made about all people with breast cancer being women affected him and his treatment. I read it in a magazine in a waiting room some where and it really stuck with me in a " Wow! Never thought of it that way!" kind of way.

 

Yep, but will be unspecified in the stats.

 

very true, i forget if i put my gender in but the name and avatar suggest i'm male

 

I always thought it was 4:1 ratio but this article by Rick Van K cites two quite large studies which had differing results:

http://phoenixrising.me/research-2/...-fatigue-syndrome-higher-in-women-than-in-men

 

That article says somewhere between 4.5:1 and 8:1 - that's quite a difference. Also very interesting that our ratios here at S4ME don't tally (unless all the unspecified are female).
I'm sure a sociologist would have fun musing on why that may be.

I couldn't work out where to find the ratio on PR or HR - anyone else know? Just wondering how we all stack up given we all have slightly differing ethos's (is that the plural of ethos? It doesn't look right).