Men, what do you think

[usedtobeperkytina]

I can't figure out if this is the correct place to put this topic. With so many and none matching exactly, I don't know. So move it if needed. (Just leave a shadow so I can find it.)

I have been thinking a lot lately about all you men. I remember a CFIDS Chronicle article in the first issue I ever read that pointed out how much harder CFS is for men. And I can totally understand: lack of ability to financially support family, blow to idea of "strength" associated with manhood, being labeled with a "woman's illness" and one associated with neurotic women at that, etc.

But now we learn that XMRV is turned on by progesterone.

How does this news affect you men?

Tina

 

[acer2000]

Kind of an odd question, but I'll take the bait. :Retro smile: First, in addition to replication apparently being effected by progesterone, it is also effected by androgens - the main hormone being testosterone - and cortisone. Men have more testosterone than women, and both sexes have cortisone.

So I guess I don't really think this news about progesterone effects anyone one way or another except for maybe explaining why some women's CFS symptoms worsen when their hormone levels change. I don't think sex hormones in men fluctuate as much as in women. Cortisol fluctiates in both sexes.

Secondly, even if hormones promote viral replicaton, I'd wager you'd still be sick if you had the virus and no hormones (a situation which is impossible anyways). So ultimately a solution to XMRV that requires manipulaiton of any of those hormones is not gonna work. You need progesterone, testosterone, and cortisone to live. The solution is to get rid of the virus.

/shrug

 

[omerbasket]

asus389, I think your answer is great, but I just want to correct you on one thing: I think it's cortisol, not cortisone. as far as I remember, there are some differences between the two.

By the way: I saw in Dr. Mikovits' presentation that, if I understood correctly, if you have more cortisol it allowes the virus to replicate more. That's seating well with me feeling worse every time I'm in stress or after stress (as cortisol, "the stress hormone", is released more I believe when you're in stress). On the other hand, there are many people who says a treatment with low doses of cortisol make them feel much much better. As a person who also has Crohn's disease, I remember a time when I had lots of pain (not sure if it was the fibromyalgia or not - as it was long before I was diagnosed with fibromyalgia), and when I started taking prednisone (although it too is not cortisol) I felt much better (regarding the pain and more).

Someone has an idea what is going on here? :Retro smile: (it's funny, that icon is called "Retro smile". I wonder what would be the new icon here if XMRV turns out to be the cause of ME/CFS... ).

 

[valia]

I can't figure out if this is the correct place to put this topic. With so many and none matching exactly, I don't know. So move it if needed. (Just leave a shadow so I can find it.)

I have been thinking a lot lately about all you men. I remember a CFIDS Chronicle article in the first issue I ever read that pointed out how much harder CFS is for men. And I can totally understand: lack of ability to financially support family, blow to idea of "strength" associated with manhood, being labeled with a "woman's illness" and one associated with neurotic women at that, etc.

But now we learn that XMRV is turned on by progesterone.

How does this news affect you men?

Tina

As usual I can't offer any useful response to this or aything else for that matter, but I suddenly feel sad thinking about cold-taste of tears, does anyone know where he is now and where he may be posting on another board or wherever?? Sorry if this is off topic, but he touched my heart and I would like to know how he is going on

 

[dipic]

As usual I can't offer any useful response to this or aything else for that matter, but I suddenly feel sad thinking about cold-taste of tears, does anyone know where he is now and where he may be posting on another board or wherever?? Sorry if this is off topic, but he touched my heart and I would like to know how he is going on

I don't know what happened to him here (though I have an idea...) He's still posting videos on youtube frequently under "luminescentfeeling" though, so he's still around, just not on here as far as I can tell. I do miss his presense on these boards and hope he is able to come back and start posting again. :/

(Here's his youtube profile fyi: http://www.youtube.com/user/luminescentfeeling)

 

[acer2000]

Yeah you are right about there being a difference between cortisol and cortisone. I guess I just wasn't paying attention when I wrote that. Cortisone is a metabolite of cortisol. Good catch.

 

[Abraxas]

I just read the transcription of Dr Bell's Jan 15th talk and he asks:

You have to be able to explain why children get it in equal sex ratios. Why do [in] adults more women than men get it?

Something else to think about RE. certain hormones switching on XMRV? - given that levels of male and female hormones will be different in children compared to adults?

 

[valia]

I don't know what happened to him here (though I have an idea...) He's still posting videos on youtube frequently under "luminescentfeeling" though, so he's still around, just not on here as far as I can tell. I do miss his presense on these boards and hope he is able to come back and start posting again. :/

(Here's his youtube profile fyi: http://www.youtube.com/user/luminescentfeeling)

Thanks dipic,

I miss him here too, I saw one of his videos on youtube, I will take a look.

 

[Doogle]

I have been thinking a lot lately about all you men. I remember a CFIDS Chronicle article in the first issue I ever read that pointed out how much harder CFS is for men. And I can totally understand: lack of ability to financially support family, blow to idea of "strength" associated with manhood, being labeled with a "woman's illness" and one associated with neurotic women at that, etc.

But now we learn that XMRV is turned on by progesterone.

How does this news affect you men?

Tina

I don't care if is it is turned on by progesterone. There is obviously more to it than that or the ratio would be reversed and men would get it more than women. Luck of the draw, there are many diseases men are prone to by genetics just like women. But I would like to express my opinion on your other comment. I would much rather be a man with this disease because IMO when a man tells a doctor something he usually listens. I have not been told that very much by women and I used to be a support group leader so I have talked with a lot of PWCFIDS. I would feel like ringing some of the doctor's necks over how they have dismissed some women patients. I used to know a man about 6' 4" and 300lb of muscle with CFIDS. When he walked into the doctor's office they sure as heck listened. I was told by a good source that when he was hospitalized and put on IV antivirals for 21 days he brought his Harley motorcycle with him into the hospital room. No one said a word to him about removeing his motorcycle.

 

[heapsreal]

alot of guys wont see a doc, they just self medicated and get drunk, they dont know why they feel like crap, even if they did see a doc and dont test properly, they say tests are normal u will get over it, back on the drink they go. Also wonder if alot of people diagnosed with depression have cfs/me, especially so called resistant depression.

 

[muffin]

I have long suspected that the real numbers for men with CFIDS is much higher than what they report simply because CFIDS has been tagged as a woman's disease. So, the men either do not go to the doctor and self-medicate OR they do go to a doctor and are diagnosed with something else, but NOT CFIDS. My husband was diagnosed with "burn out". I have watched him and can say that he has CFIDS. He has spent the last 5 years on the couch, day and night, and no longer has any energy to do anything. He also becomes wiped out from doing the smallest things, like going to the supermarket. His sleep is so bad that he is on a ton of meds and this man never had a sleep issue in his life pre-illness. I had him tested by every doctor I could think of and they all said he was just badly burned out. Right. He has CFIDS. And either I gave it to him OR when we both got a summertime virus 15 years ago and I got CFIDS/FM and he got better, the virus went underground and hid until he was stressed and his immune system weak - then bam! he got CFIDS full-blown.

So I really do believe that there are far more men out there with true CFIDS than the CDC numbers show. I would NOT be surprised if it was a 50-50 split or there abouts. Shame, because men need a better diagnosis and treatment than just - "You are burned out - have some sleep meds and rest" - not fair to the men.

 

[Abraxas]

I have long suspected that the real numbers for men with CFIDS is much higher than what they report simply because CFIDS has been tagged as a woman's disease. So, the men either do not go to the doctor and self-medicate OR they do go to a doctor and are diagnosed with something else, but NOT CFIDS.

If this turned out to be the case it would explain the current equal sex ratio of this illness in children but not in adults.

 

[dipic]

I have long suspected that the real numbers for men with CFIDS is much higher than what they report simply because CFIDS has been tagged as a woman's disease. So, the men either do not go to the doctor and self-medicate OR they do go to a doctor and are diagnosed with something else, but NOT CFIDS. My husband was diagnosed with "burn out". I have watched him and can say that he has CFIDS. He has spent the last 5 years on the couch, day and night, and no longer has any energy to do anything. He also becomes wiped out from doing the smallest things, like going to the supermarket. His sleep is so bad that he is on a ton of meds and this man never had a sleep issue in his life pre-illness. I had him tested by every doctor I could think of and they all said he was just badly burned out. Right. He has CFIDS. And either I gave it to him OR when we both got a summertime virus 15 years ago and I got CFIDS/FM and he got better, the virus went underground and hid until he was stressed and his immune system weak - then bam! he got CFIDS full-blown.

So I really do believe that there are far more men out there with true CFIDS than the CDC numbers show. I would NOT be surprised if it was a 50-50 split or there abouts. Shame, because men need a better diagnosis and treatment than just - "You are burned out - have some sleep meds and rest" - not fair to the men.

What the heck kind of diagnosis is "burned out"? =S

 

[ukxmrv]

Maybe the gender ratio could be explained when we know how the virus is spread.

Say for instance transmission from Mother to child being 50/50

But for adults, transmission being from infected male carriers through sexual contact. If the males are asymptomatic longer and can infect more partners, that may explain the larger proportion of women getting the disease later in life.

Just an idea.

 

[Sing]

I would much rather be a man with this disease because IMO when a man tells a doctor something he usually listens. I have not been told that very much by women and I used to be a support group leader so I have talked with a lot of PWCFIDS. I would feel like ringing some of the doctor's necks over how they have dismissed some women patients. I used to know a man about 6' 4" and 300lb of muscle with CFIDS. When he walked into the doctor's office they sure as heck listened. I was told by a good source that when he was hospitalized and put on IV antivirals for 21 days he brought his Harley motorcycle with him into the hospital room. No one said a word to him about removeing his motorcycle.

I enjoyed this reply, Doogle!

But I wanted to comment that I too believe that a lot more men may have this illness. I suspect that my father did. His memory started failing in his 50's. He covered it up by clamming up. He did less and less work, I think, going into the city but then doing who knew what in his solitary office. He made very little money then, but he was divorced and still handsome. He hooked up with a wealthy woman who saw him through the eyes of projection. Her imaginings of who he was were really different than the truth. Soon he was driving off to the beach every day for long solitary fishing trips. Maybe he slept in the jeep! Then he had to go to bed early so he could get up in time for the fish in the am. My little boy came to know him as "Grandpa Fisherman". His old age was largely silent; his body got stiffer and stiffer. He drank alcohol for the anaesthesia, I think. Not a huge drinker but a daily, moderate one. What he stopped drinking, however, was water! When I asked him why, he said it was because he peed so much--he didn't want to have to keep peeing. (That made no sense to me then, but now knowing all the peeing and drinking of H2O I do, due to an underfunctioning pituitary--a typcial problem in ME, wrote Dr. Byron Hyde.) He also chewed so many ibuprofen and aspirin, they took the enamel off his teeth. All he knew to call his pain was arthritis, but his whole body stiffened up. (Mine has been doing the same.) He died at age 80. I wonder if he had ME? XMRV?

Sing

 

[usedtobeperkytina]

Interesting comments.

I didn't expect the direction this has taken.

I agree that many are misdiagnosed as depression. I almost wonder if docs are more likely to diagnose men as depressed than CFS. Depression is now accepted as more of an equal gender opportunity illness. But CFS is still associated with women.

Of course, in US, even the women are also misdiagnosed as depression. One of my doctors tried that. The second one. He then found hypothyroidism. So even by his test, he was wrong. I moved on to the next doctor in my search, an endocrinologist.

I told my current doctor of that experience when asking her to tell me frankly what she thought CFS was. She looked at me surprised, "You're not depressed." Of course, I am better than I was back when I saw that internist. When I saw him, I was spending days in the bed and was dragging when I had to get out of bed.

I also agree that men's health complaints are taken more seriously. That is the other side of the coin.

Thanks for sharing folks. The thought of incidence actually being 50% is intriguing.

Tina

 

[Denn]

Yep, I totally agree with muffin: surely there are many more men than are diagnosed. Probably, for all the reasons stated. I waited for years. I knew what I had, knew there were no legitimate treatments, and just managed it myself. I guess men receive better treatment from doctors than women, but I can't say that's been my experience. I just avoided being misdiagnosed by not being a patient.

It is weird, though, dealing with the gender tainting of the illness. I just don't talk about it--just like all the other guys!

Denn

 

[muffin]

DIPIC: I can always count on you to spot odd stuff

What the heck kind of diagnosis is "burned out"? =S

I too wondered what the heck this meant. It's like having "hysterical paralysis" isn't it? It's not a medical diagnosis that I know of but I took him to so many doctors and even shrinks and NONE of them could say what was suddenly wrong with him. First it was his sleep, then everything went to hell in short order, just like CFIDS.

I always found the "burn out" "diagnosis" to be stupid. Just plain stupid. My husband LIKES that diagnosis since it isn't something wimpy, but more of working waaay too hard, which was true. I maintain he has CFIDS.

Again, DIPIC, you noted something wrong. He does not have burn out - he has CHRONIC FATIGUE/IMMUNE DYSFUNCTION.
But the male doctors will NOT agree with that diagnosis, not even MY internist who has treated me for 15 years for CFIDS. I do think the male doctors don't want to dump the female diagnosis of CFIDS on the heads of men. It's a male-macho thing that damages men and causes them to not get the treatment they so badly need.

For public purposes I let my husband say he has burn out. But at home I tell him he has CFIDS, deal with it. And I call the shots on his doctors, meds, etc. I'm the wife with CFIDS, so we do what I think is right for him.

Glad someone else saw how stupid that diagnosis was!

 

[muffin]

Abraxas: "If this turned out to be the case it would explain the current equal sex ratio of this illness in children but not in adults."
--> I too wondered about the basically equal numbers of young children/teens getting CFIDS. Struck me as very odd. At first I thought they may have something different from us adults, but that doesn't seem to be the case. I think Dr. Peter Rowe at Johns Hopkins who deals with children with FM and CFIDS may have more insight into this? He also treats adults. So, maybe he might actually be the best person to make an assumption of this kid versus adult statistics discrepancy.

UKxmrv: Maybe the gender ratio could be explained when we know how the virus is spread.
Say for instance transmission from Mother to child being 50/50
But for adults, transmission being from infected male carriers through sexual contact. If the males are asymptomatic longer and can infect more partners, that may explain the larger proportion of women getting the disease later in life.
Just an idea.
--> I believe I read somewhere about women and their getting something from their new babies. Then they had a reason for why women who did NOT have children also got the disease, it was convoluted and I never read this odd-duck theory again.
Maybe female babies are more prone genetically to get from their mothers and that raises the numbers up a bit. And who knows, maybe men ARE asymptomatic longer and do infect more women along the line and the women might get it easier. Again, my husband and I both got a terrible summer virus and he got better and I got sicker and sicker. About 10 years after that virus and at my 10 year illness onset mark, HE did get sick. So again, either we both got the virus and I was in more of a position to get sick right then while he had 10 years to fight it down (not out), OR I gave him something and maybe or maybe not that summer virus had a role in his illness.

It will be interesting to see how transmission does work in our disease. I still think there are many more men out there not diagnosed with CFIDS for the reasons we all have cited. And again, that's a shame that men go without the care they need because of a stupid stigma caused by the CDC/CFS people. Yet another reason to shut the CDC down. So not happy with the CDC...

 

[muffin]

Sing: I think my father had CFIDS as well

He was also diagnosed with Fibrositis (old term for fibromyalgia) and by age 50 was in so much trouble that he had to make a major change and move from general surgery to outpatient proctology so he didn't have to lean over an operating table but instead could sit and look into someone's butt and do that sort of work. He used to come home and complain about his legs (he wore support hose for swelling) and then go upstairs and take his clothes off, leave his tee and shorts on, and lay down on the bed with tons of pillows propped up and several heating pads.

Around age 50, he worked and then came home and watched TV for the rest of the night. He had no energy and after he retired was sleeping huge amounts. Both my husband and I now think that HE had Fibro AND CFIDS. Poor man, no Tylenol, Advil or anything else. Just aspirin. And he could not drink either. He also clammed up on all pain, issues, etc including heart attacks.

So, maybe the Mito discussion where the mito disease/disorder only comes from the mother is wrong. I may have gotten the CFIDS from my father and DID get the Fibro from my father and his mother (my Grandma).

All curious....