Posts by Lilith __
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Dyan, I appreciate that you're trying to be helpful, and of course I agree that meditation and any other techniques which soothe and calm and relax are great. I practice tai chi myself, and find it enormously helpful for my general ability to cope.
But upthread it did really sound like you were saying that mindfulness/meditation was curative, and hence the kneejerk reaction from many of us.
After you've heard x number of random acquaintances/complete strangers suggest positive thinking/exercise/anti-depressants/patent remedy/exorcism/drinking own urine*, your patience for receiving advice gets pretty short.
But I totally endorse any technique that makes you better able to cope. And (as I think I mentioned upthread) I got a lot of benefit from seeing a counsellor to help me deal with the emotional aspects of being chronically ill. It doesn't change my condition, but it helps me feel OK about myself and manage my life better around that condition.
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
:-) Well put, Bart!
*these are actual examples, BTW! -
In the case of type 2 (which accounts for more than 95% of all diabetes, then indeed you can alter the insulin receptivity, if not the production of insulin.
Dyan, the study you quote is an uncontrolled one of 14 people, which found a beneficial change of 0.5%. I don't find that convincing, and I think advocating meditation and positive thinking for those with serious illness borders on being insulting. While I'm sure meditation, yoga, and generally doing things that make you happy helps you cope with serious illness, I've never seen any evidence that it's a cure.
I think the belief that we can "think ourselves well" comes from the belief that our health (and destiny in general) is under our control. It just isn't. Serious illness can strike anyone, at any time. And you can't just unthink it.
And "thinking positive" can so easily lead to self-delusion and denial: if you don't really listen to your body, you can make yourself much sicker. I'm sure the other CFS sufferers on this thread will have done as I have done: tried so hard to force their bodies to perform normally that they made their illness much worse. We have to work out ways of living within our limitations. And ways of coping with the psychological and emotional effects, which are considerable.
I'm always immensely grateful for the help I get from those close to me, even in small ways. And even a little kindness and understanding from others makes my life soooo much easier. Many thanks to those on this thread who have expressed their support, I value that more than I can say. And knowing that many on the thread also have CFS and understand exactly where I'm coming from, that's wonderful, too.
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as far as I can tell, the neurobiological and the mitochondrial are far from mutually exclusive. Just look at the function between visualising biting into a slice of lemon, and the process of the production of saliva. An incredibly fast, mind-body link - a physical manifestation of a psychological stimuli.
I don't think salivating at the thought of food is analogous to repairing damaged mitochondrial DNA by thinking about it. Can diabetics make more insulin by thinking about it? No, because their pancreatic tissue is too damaged.
Everybody thinks thinking positive helps people survive cancer, but research shows that statistically it makes no difference. It's one of those comforting fictions that can turn into blaming the victim for their failure to get well.
And I don't think PTSD is analogous to normal life-stress, either. In the absence of major trauma, I think we have to look for organic causes. Perhaps we will have to agree to disagree on that.
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Thanks, Dyan, I'm so glad to be having all this discussion. :-)
I guess what worries me a lot about ascribing the cause of chronic fatigue to the brain is that it seems like a cop-out. I can well understand that pain is neurally-mediated, and that the relationship between pain and perception is complex, but I don't see that you can apply that same model to fatigue, except in exceptional cases. Yes of course the brain is a biological entity and changes to body chemistry affect the brain, and damage to the brain can cause trouble in the rest of the body, but I think we have to look further afield to explain CFS.
Since energy is metabolised in every cell in the body, I think we have to look either at that process itself* or at some immune problem, either of persistent infection or of disregulated immune response. Or both or all of these things.
I worry that if we stop researching all the options we might miss something important. More research is so badly needed.
*which I mentioned upthread, in relation to mitochondrial function, and the muscle-fatigue study at The Pacific Fatigue Laboratory, where CFS patients whose muscles performed reasonably well on the first day could not perform to that same level for some days afterwards, and those who performed poorly on the first day performed worse on subsequent days. This seems to suggest trouble in the muscle cells themselves. -
In childhood "failure to thrive" is a very real and life threatening condition.
And, sorry to go on, but I know of one young boy who "failed to thrive" and his parents thought he just wasn't very strong, and made allowances for that. In his teens he had a heart attack and when tested was found to have a congenital heart defect which was corrected with surgery, after which he was much better.
I'm very inclined to treat unexplained illness as unexplained illness. There's so much we don't know.
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The neurobiology of the disorder is becoming apparent - and through this understanding of how CFS can result from either head trauma or stroke (any kind of brain injury) they are starting to understand how they might better treat all forms of CFS.
Dyan, do you have some references for that? I know the HPA-axis has been implicated by various researchers at various times, but HPA tests come out perfectly normal for many of us.
As I said, I'm not doubting that brain traumas can cause serious fatigue, but I can't believe that most cases of CFS can be traced to such a source. How can such a theory explain the role of viral illness in the onset of CFS? True, not everybody with CFS has that pattern, but most of us do.
MS, lupus, and rheumatoid arthritis are auto-immune diseases. So there's no pathogen involved. Although of course what triggers these illnesses is still unknown.
And regarding stress: the course of my illness has been of the relapsing/remitting type, and in my periods of remission I've dealt with quite big amounts of life-stress without relapsing, and I've sometimes relapsed at times when I had almost no stress at all. Yes, sometimes I can look back and think, "I was doing too much", but just as often I can't explain why my health deteriorates when it does. Or why it improves when it does.
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And Dyan, I can believe that certain types of brain injury cause fatigue, but it doesn't follow that all fatigue is caused by brain injury.
There is the possibility that CFS is caused by some neurological damage as yet unknown, but to me it's down the list of likely culprits. It can't explain the immune dysfunction, for one thing.
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It still surprises me that people blame stress for CFS. Of course stress is never good for anyone, that's what stress means. But I think we have to stop blaming stress, (or other psychological factors, Dyan) just because we don't know the pathology for what's gone wrong.
Remember when peptic ulcers were caused by stress, and patients with ulcers were told not to worry so much and they'd get better? And then those Aussie researchers found that the ulcers are caused by a particularly nasty bacterium, and that antibiotics fix them? Those researchers won the Nobel Prize.
Going back in time, TB was thought to be caused by a "consumptive personality". And then the actual cause was found.
Until we know what causes CFS, I think it's smarter to say we just don't know.
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Bart: by "moot point", I just meant that nobody knows. Of course I'm sure somebody will eventually find the answer, and I hope it's tomorrow! But until that time, we have to treat the symptoms as best we may, like you say.
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.
I'm sure you're right.
I'd be really cautious about there being a huge difference between CFS in men and women without some good stats.
Aren't there heaps of diseases that affect women more commonly than men, and vice versa? MS is one that springs to mind.
I'd argue that there are less severe CFS cases that are still CFS.
Well until we have a clearer picture of what CFS consists of, it's all open to debate. As somebody (?Julie) said earlier in the thread, cancer is actually hundreds of different diseases. It's likely there are at least a few hidden within CFS, which would account for the variation in symptoms and the pattern of illness. But I would argue that someone who is mildly ill and who then completely recovers is best described as having post-viral fatigue, or something else entirely. Post-viral fatigue is not uncommon, and lots of illnesses have fatigue as a marker. CFS isn't usually diagnosed unless symptoms are severe and chronic and all other possible causes have been ruled out.
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Bart: You make a lot of sound points, but I have to take issue with this:
Who are, so far here, exclusively female. Is there some science on that?
I doubt it. As Emma said it's more likely to be a reporting bias. I know a guy who got CFS after a dose of glandular fever. His experience was very similar to Emma's. It's likely that men for whatever reason don't report and self medicate (alcohol) or just carry on working when they feel like crap because they believe there is no other choice.
There may be reporting bias, but it's also possible that women are more susceptible than men, perhaps due to hormonal factors.
Self-medication with alcohol makes the majority of CFS patients much worse, not better. There's even research to back that up.
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.
Emma:And the emails and messages keep coming in from people who just want to talk in private.
I begin to wonder if everybody on PAS has CFS, at this rate :-)
Russell, Jackie, Megan, Jack, et al: arohanui for your kindness and compassion. Many people are so freaked out by chronic illness that they forget to be kind. For a cough or cold or stomach bug, everyone is sympathetic and makes a fuss of you; for serious chronic illness, a lot of people don't want to even hear about it.