Saying, "You should try ...
So is there a difference between saying "you should try..." and asking "Have you tried ...?"
I know I'm trying to justify my need (see there I admit it) to advise. But also part of it is my innate/inept curiosity. One of the things I like about this thread is that it's really clear from the CFS patients here what does not work (pretty much everything) and from that you actually learn something about the disease.
You also learn something about how hard it is for those with it.
As for people having a PhD in themselves, I'm sorry but I really have to disagree. I'm smart and knowledgeable and eminently capable of doing research. But that did not stop me from being completely ignorant about my depression. That needed someone else's expertise to show me stuff about myself. I agree that patients have a strong motivation for doing research on their condition but I think assuming that people have done that research is not safe. That's no excuse for being rude but dammit I'd rather be rude than not ask the question that might make someone's life a lot more pleasant.
Besides it's either that or I have to weed Emma's garden and since I can't pull finger to weed my own ...
Don't offer advice. Not even if you mean well. Just don't do it. Especially if you have never had to cope with the condition yourself.
You have no idea how much stress it causes me to follow that advice :). I think I'm genetically programmed to advise :). Just slap me and I usually remember to stop.
No CFS in the genealogical line that I know, but lots of allergies. I wonder if that's linked?
If it is immune system linked then there will certainly be a genetic component. But the genetics of the immune system is far from straightforward so it won't be a simple relationship.
I'm not sure we're in that much of a vacuum though.
Cool fact sheet Russell, and yeah I guess it really is a disease that affects women more than men, hmmm now why could that be? So many of the points on this thread are listed clearly. Except for the care and support that PAS contributors share for each other.
And sorry for the post spam there were just a bunch of things I wanted to comment on - especially the food - hungry now.
Heh, since I'm a make it up as you go kind of cook, there's no telling whether I can reproduce past successes :D
I hate that. My better half does that and then can't remember next week how she made that wonderful dish so this time it will be different. Meanwhile unless I have detailed and precise instructions my cooking is fail :(.
She says, and I agree, that we each has to cope in whatever way works best for us, and no one else should be dictating what attitude we should or should not have.
From someone fond of giving advice (sorry bad habit) it may come as a surprise that I firmly believe in this.
Whatever makes you feel better is what you should do. Modern medicine is great, modern drugs can do great things. But on top of all that anything you do, be it watching soap operas or yoga or driving fast cars or wallowing in misery or whatever, anything you do that makes you feel better is good.
So for the last couple of years I've been feeling vaguely guillty every time I braise lovely lamb -- and for nothing?
The guilt probably added to the pleasure :P.
mmmm slow cooked meat is my favourite. I'll add slow cooked ribs to the list it only take 2 days to cook but it's worth it.
those who say they were cured with exercise most probaly were never given a correct diagnosis, as all studies point to those experiencing CFS as needing to be very careful around exercise.
Or, only after their CFS had ended were they able to exercise. Hence the ability to exercise and the ending of CFS coincides and that leads to the association of successful exercise with the end of the CFS. There is a cause and effect relationship but it is the wrong way around. Basically a recipe for confusing anecdotes.
I don't have any trouble believing there are many other diseases to which women are more prone.
Neither do I. I'm just really cautious about anecdotal evidence. It's always worth following up on perceived trends but for something like CFS where cause(s) are still so uncertain even a simple misdirection like women get it more than men could create lots of confusion if it isn't really true.
Women are most definitely different medically, I didn't mean to imply that couldn't be true. In fact the history of drug discovery and testing in the 20th century is littered with cock ups because drug testers didn't think to test the drugs on women. The most obvious result is that common anesthetics were all tested on men and nobody realised until far too late that women react really badly to most of them. Hence I'm up and about all bouncy after a general and my darling feels like crap for a few days.
I think you'll find that about every second person on PAS is a left-handed tattooed sleep-disordered chronically-ill technical writer with a philosophy degree.
Hah! right handed and no tatoos, I sleep normally ... now that I'm no longer depressed ... does writing journal papers count ... oh shit Doctor of Philosophy ... crap!
checks carefully ... yup definitely no tatoos!
As far as men carrying on working when they feel like crap...if they can continue fulltime work, they don't have CFS. I tried to carry on working when I was having a relapse, and I was unable to stand up for more than a few seconds at a time and kept vomiting. CFS is a severe illness, not just an inconvenience.
Yeah fair cop, sorry. I realised after I wrote that that it could read as if I thought men could work through it. Or that CFS was something you could work through. I know that's not true. I didn't mean to imply that they'd be any use at work but that they might be inclined to believe that turning up and being good for nothing at work was the right thing to do. Argh I can see myself digging a hole here because I know women who will do that as well.
But men are notorious for being really bad at reporting chronic problems. Despite the "man flu" stereotype. So I'd be really cautious about there being a huge difference between CFS in men and women without some good stats. Especially for the CFS cases that are not as severe as you describe, and I'd argue that there are less severe CFS cases that are still CFS.
You're right, there could be a hormonal component that make women more susceptible. But until we really understand the cause we won't know.
Self-medication with alcohol makes the majority of CFS patients much worse, not better. There's even research to back that up.
Yup and what you get is a drunk very ill man likely to be misdiagnosed at that point. I didn't mean to suggest it was effective but more that it might lead to misdiagnosis and hence to a reporting bias for CFS.