XAND - A Woman's disease?

[Levi]

..........

 

[bakercape]

I have

allways thought that there is not a big difference between the amount of men and woman with CFS.

I think that the amount of diagnosed people with CFS shows a difference in our societal values.

I think it is more socially acceptable for a woman to be ill with an illness like CFS.

I believe that woman are more tenacious in seeking a diagnosis and less afraid to present their symptoms to a doctor.

I think there are lots of men sick with CFS that just refuse to even see a doctor for fear that compalining will make them appear weak or less than a man. If CFS is proven to be caused by a virus I would doubt it cares wether or not you are a man are a woman. Although it could affect men and woman differently.

 

[bakercape]

Look

at those Fibromyalgia commercials. They allways show a woman in pain. Like men don't have fibro! If you present an illness a certain way I think it can kind of lead to an underdiagnoses and recognition in the other sex.

 

[Esther12]

Surely the most seriously affected have no choice but to acknowledge their illness though. Is there any report of a more even occurance of severe CFS amongst men and women?

Maybe XMRV will only explain a subsection of CFS patients, and these will be pretty evenly men and women? Who knows... it's still early days.

 

[Advocate]

It's interesting to watch the XMRV testing data from the sticky polls roll in gradually. One thing that sort of jumps out at me; men seem pretty well represented among the XMRV postitives.

http://chronicfatigue.about.com/od/latestresearch/a/women_pain.htm

http://www.womenshealth.gov/faq/chronic-fatigue-syndrome.cfm#d

I've been surprised by how many men participate in this forum.

 

[perovyscus]

It's interesting to watch the XMRV testing data from the sticky polls roll in gradually. One thing that sort of jumps out at me; men seem pretty well represented among the XMRV postitives.

Could you aggregate? I haven't been keeping tabs.

It seems if XMRV shares commonality in immune response to HIV, women would progress faster in terms of incubation and proliferation and general morbidity. But being male would increase transmission efficiency. That's why this preliminary evidence is interesting regardless of psychosocial aspects.

 

[hensue]

I am a women with fibromyalgia who tested positive

How do you who is a man or women? Men have horrible fibro I have a friend who committed suicide over the pain. He could not do his work for his family any more and they told him it was all in his head. I really think there are so many men out there that have it and just have not been diagnosed yet.
Men do not seek out docs as a norm like women do.

I do not really believe cfs or fibro is just a women's disease. So many men have not come forward yet. I believe as time goes on and if this is the real deal about xmrv. We will see a lot more of men and children too.

 

[anne_likes_red]

Will XAND cover other XMRV related conditions?

I think ME/CFS is estimated to be approx 2/3 women and 1/3 men.

I think with Autism it's approximately reversed - 2/3 male and 1/3 female.

Perhaps hormones play a part in supporting the triggers that turn XMRV from dormant to latent???
I do expect that with sensitive testing XMRV will be detected at significant levels in Autistic Spectrum Disorders too.

I'd be surprised if XMRV is gender biased. Perhaps in it's latent form it may be though? Interesting to see

 

[Robin]

How do you who is a man or women? Men have horrible fibro I have a friend who committed suicide over the pain. He could not do his work for his family any more and they told him it was all in his head. I really think there are so many men out there that have it and just have not been diagnosed yet.
Men do not seek out docs as a norm like women do.

Good lord that's awful. I'm so sorry about your friend.

One of the early things I read about CFS when I got diagnosed is it was called Yuppie Flu because mostly white, educated, upper middle class women got it. So, researchers were surprised to realize that men and non-white people got it too. They had associated the diagnosis with the demographic most likely to aggressively seek medical care.

Maybe you're seeing a discrepancy in test results because a lot of men are getting tested? I know that they are much more willing to participate in clinical trials than women (can't remember where I heard that....), maybe they're more aggressive about testing too.

Levi, I can't believe you don't want more sticky polls!

 

[Mark]

I think ME/CFS is estimated to be approx 2/3 women and 1/3 men.

I think with Autism it's approximately reversed - 2/3 male and 1/3 female

I think I heard autism is 4:1 male:female, but the point still holds because autism seems likely to divide into genetic and post-80s epidemic (XMRV) forms. I speculated wildly around this point quite a while ago, here and on an autism thread. News of the autism connection made a few of us suspicious of exactly this possibility - ie that autism and ME/CFS are two different forms of expression of XMRV, and that perhaps gender assumptions tend to lead to the difference in diagnosis. I also suggested that the 2:1 ratio seems suspicious to me (would be more suspicious if I knew that ratio is consistent in different countries, and averages very close to 2:1). Another possibility we discussed was possible differences due to transmission - eg if male to female transmission were possible but not the reverse. And finally, the really wild speculation bit was that in the prostate study, the infection rate in the male controls was 6%, whereas in WPI it was 4%, which if both figures were accurate would mean XMRV infection rate would be either 2:1 or 4:1 male:female (depending on whether the controls were gender-matched).

But I have to agree with Levi as well - I too suspect there are going to be lots of men appearing as if from nowhere and testing XMRV+. Unlike Levi, I do see a GP, but I had to switch a couple of times to find one who's prepared to operate on the basis that my condition is physical; any suggestion that it's psychological, and I'm off. I recall a frank discussion where my doc and I agreed that while a diagnosis of CFS would probably be technically correct, there was no useful purpose in that diagnosis because the only treatment available was CBT. So I effectively refused the diagnosis since by definition it was considered psychological, and my GPs were all wary of diagnosing that way because (a) it supposedly mainly affects women, (b) it could have negative repercussions for me to have that diagnosis as a man, and (c) it would close down the treatment options rather than open them up. The other man I know with CFS (or I should say CFS symptoms) prefers a diagnosis of MCS, and as far as I know he hasn't seen a mainstream doc for years.

So yes, I suspect there are a lot more of us out there...

 

[Mark]

...it was called Yuppie Flu because mostly white, educated, upper middle class women got it. So, researchers were surprised to realize that men and non-white people got it too. They had associated the diagnosis with the demographic most likely to aggressively seek medical care.

I just realised that this very point implies that, as suggested, it really must be true that a lot of people with CFS don't seek medical care. I'd guess that could only apply to relatively mild cases though. Maybe it's on average less severe in men, so that a lot of undiagnosed men have a much milder form?

But to contradict myself, there's the Multiple Sclerosis evidence. That was 50-50 up until people contracting it in the 80s. Since then, MS - particularly atypical forms - has been on the rise, but crucially the increase is disproportionately affecting more women than men (see wikipedia). If the rise in MS really is due to XMRV, that would suggest that women really are more likely to be affected by XMRV than men, even though it appears that men may be more likely to be infected.

Levi, I can't believe you don't want more sticky polls!

Yeah what do you mean? Can't have too many sticky polls!...

 

[Countrygirl]

British Medical Journal



Hi Mark,

If your doctor reads the BMJ, it is no wonder that he would be reluctant to diagnose you with CFS. According to that prestigious journal, what you have is 'Wondering Womb Syndrome'. :

Do you have any problems with that? The author was Caroline Richmond, bless her cotton socks. I think...can't swear to it....that it was the heading of the article that the BMJ saw fit to publish.

 

[anne_likes_red]

Athene...

...super-interesting about the brain!!!

In fact all your bits and bobs and "rambling" thoughts there have given me lots to think about Makes lots of sense!

Cheers

 

[Hysterical Woman]

Interesting discussion

Hi All,

Very interesting discussion. Hopefully we will eventually know more about whether this ridiculous disease impacts more women than men. In Dr. Cheney's video on his cardiac insufficiency hypothesis, he talks about the differences between men and women's hearts and their ability to pump. He mentions one particular part of the heart (which I can't remember- someone else jump in here?) being larger in men and in women who have participated in a lot of athletic activity and as a result they are less susceptible to the diastolic insufficiency.

The video is worth watching but it is long (3 hours) - I haven't made it to the end and it is hard to restart from where you left off. It was also made prior to the XMRV/CFS paper published in Science, so it is hard to tell how the discovery will impact his theories. The link to it has been published in a couple of other threads, but if anyone needs it, post a message here and I will search for it.

And Levi - sorry for your frustration!! That stinks! Many docs don't ever seem to learn.

Take care,

Maxine

 

[Mark]

Thanks ever so much for that extra detail Athene, that explains so much. I think it fits perfectly with the theory that CFS and autism are ultimately pretty much the same thing, which I think you've expressed before and with data like that you've just mentioned, I can see why. It seems to suggest that there isn't a gender difference in infection rates etc, just in the nature of the effects. How would you feel about the suggestion that women with CFS are also being made 'more geeky' in the way you describe? There have been controversial comments by psychologists about it affecting 'certain personality types', which they seem to have interpreted as evidence that CFS is psychological, and a number of people on this board have made similar observations. It's a sensitive area so perhaps difficult to comment on without risking offence, but I do think we're really on to something crucial here.

 

[xanadu]

Why can't a woman be more like a man?

Countrygirl, Thanks for the reminder of the lovely Caroline Richmond. Her BMJ article "Myalgic encephalomyelitis, Princess Aurora, and the wandering womb" is here http://www.bmj.com/cgi/pdf_extract/298/6683/1295 Page 2 is more of the same - supplied by the Ministry of Truth for hacks to disseminate.

xan

 

[Robin]

Thanks ever so much for that extra detail Athene, that explains so much. I think it fits perfectly with the theory that CFS and autism are ultimately pretty much the same thing...

I've been reading the autism thread and I have to admit, the linkage is sort of a head scratcher. CFS is flu-like, exhaustion and pain causing illness and autism is a developmental disorder; is there even any overlap in symptoms?

Perhaps, if there is an XRMV link between the two diseases, it would be an in-utero type of thing? Supposedly women who have flu during pregnancy are more likely to have children that develop schizophrenia, and there's been speculation between borna virus and OCD. Maternal toxoplasmosis and cytomegalovirus infections can have neurological consequences on babies. Perhaps, a child will have a autistic genetic framework and maternal XMRV nudges gene expression in favor of autism?

I just hope some of that autism money gets thrown at XRMV research!

 

[Countrygirl]

Thanks Xanadu! Love your heading - very appropriate! I think Ms Richmond may live to regret writing that article - I was shocked when I first read it - now I think it's a hoot!
Its one for the history books when the truth comes out. Lots of egg on lots of faces.... Just hope the end is in sight, but can't pop the champagne corks quite yet.

 

[fresh_eyes]

I've been reading the autism thread and I have to admit, the linkage is sort of a head scratcher. CFS is flu-like, exhaustion and pain causing illness and autism is a developmental disorder; is there even any overlap in symptoms?

Hi Robin. I'm not an autism expert by any means, but there are a lot of surprising overlaps with CFS, including immune abnormalities, food allergies and intolerances, gut problems, sensory sensitivity, and sometimes unusual fatigue.

 

[Alice Band]

Countrygirl,

You may be interested to know

Caroline Richmond went on to be a victim of "medical negligence". She was given a hysterectomy, without her permission, during an operation for an endometrial problem......

I have no idea if she changed her views after that or went on to any better understanding