Up Front: Something Chronic
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Most surprising thing in this thread so far:
{Me)
I now spend literally 40 minutes a day cleaning my teeth
Heh, well I know it's ridiculous to you but just consider how ridiculous it is to me, I grew up compelled to spending a good chunk of my life to dental health as it was... there were endless fluoride trays, x-rays, hygienists and dental accessories were considered a Christmas stocking stuffer. So imagine my surprise that all of that still results in the onset of gum disease.
At that point I was transformed from dentally conscientious to dentally completely obsessed this dastardly little pathogen isn't going to get the better of me, oh no... and feel free to laugh. Forgive me if I don't respond... I'll just be flossing, inter-dentally brushing, brushing, gum line brushing and brushing my teeth. And rinsing with a $120.00 mouthwash. Obsessed? Me? Nonsense!Plus there's my whole 'wanting to shoot heroin in my eyeball' response, which is practically Pavlovian, at this point.
That's just human. That's why my Westie friends used to dream up drinking games to accompany those don't drink or you'll be a dick or dead or both ads. That's why when I worked in public health education I was looking at the sorts of things the Maori Party do now around public health initiatives. Choices around how we live reflect Identity, not consumer choice. Those levers are hard to access, let alone affect.
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I'm very inclined to treat unexplained illness as unexplained illness. There's so much we don't know.
So extremely true.
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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
Sorry, Lilith, I don't mean to assert that is the case either, just that the neurobiology behind the type of CF induced by stroke or head trauma is making interesting pointers on the road to understanding how to treat CF - and I certainly recognise its frequent post-viral or post anything onset. Many different events - from adolescence and menopause to chickenpox or kidnapping - can precipitate CF. But I believe the neurobiologists who are trying to link all the types of CF to the same set of "experiences" in the brain. You might have an ache in your arm from banging it on a doorway, or from cancer. The origins of that pan could not be more different, but our brain will feel that pain in essentially the same way, i.e. in that part of the brain, pain wise. It's not impossible fatigue follows the same model.
What I'm trying to talk about is research that is trying to map the "model" of pain (and perhaps eventually fatigue) in the brain.
You can feel huge pain, even if something heals, you can be left with pain that no longer matches anything sensible your body is saying. Where I got hit by the car and bones were exposed I have horribly sensitive scar tissue - it's like a fresh scald or a pretty recent road burn.
The pain I feel is literally in my head, seared in pathways that are not longer correct in the message they give me about the state of my ankle bone, knee and elbow. Which are all perfectly healed by now. But the pain is real to me, and literally real in the sense that my brain "senses" it. It's mini-phantom limb pain.
Fatigue can't be mapped in exactly the same way, not nearly. It is far more complex than pain, which is actually pretty straightforward. Comparatively speaking. But there are some hints that fatigue can be left jammed "on" like pain can. I'm not saying there is proof, only that some follow up of these suggestions - like some of the work being done on the body mind connection.
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
You're not going on at all! You're engaging in a robust discussion that has me thoroughly engaged. I like this a lot. Please, let us continue to discuss, disagree, correct and revise! That's what this place is for.
I don't mean to assert these things as a done deal, researched and settled. But there have been many improbable advances in the understanding and treatment of pain (no smoke, but sometimes mirrors Mirror Therapy.
The principle of pain (or fatigue) being in your head, and completely, entirely real are not out of the question.
Do realise I certainly don't mean to assert that any of the ideas or areas of research I mention are the definitive answer. Just "that's interesting' and "I hope this might be useful".
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Sue,
I read studies around brain scans where people with CFS have a different looking brain scan
But honestly that was back in 94 and nothing has come of it
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The principle of pain (or fatigue) being in your head, and completely, entirely real are not out of the question.
Yet there are plenty who would use such evidence (if it is found) to discount the condition. As if a "head injury" was any less serious than any other - the implication being that if you can't see it, it doesn't exist.
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It's another one of those threads of much learning for some of us. Thanks to everyone who's sharing their experience and knowledge here.
Totally agreed. Even though I've had a serious relationship with a former CFS sufferer, it's not something I ever enquired too deeply about because it seemed like she wanted to let it go and be in the past (although I could have asked 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. -
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.</quote?
<quote>Dyan, do you have some references for that
This is a reference for that - though as I say, no one really thinks this is completely explained, it's just an avenue of investigation.
Chronic Fatigue and the Autonomic Nervous SystemI know the HPA-axis has been implicated by various researchers at various times, but HPA tests come out perfectly normal for many of us.
Yes, but in some cases (not necessarily all) the HPA axis might recover, and hormone levels to better than normal (normal is not necessarily ideal, BTW) but the experience in your brain - that governs the ANS and consequently all your physical experiences - may be stuck on a setting that perceives a stimulus (exhaustion) and responds (fatigue).
Stress does not necessarily affect a person when they experience it. My step-Mum Jeanne had an almost epic experience of stress: at age 9 she was taken out of an extremely sheltered an comfortable upper middle class life and interned in a POW camp for those a Japanese ancestry in her native Canada - lived in stables for several months, no school, sick elderly relatives and the whole bit.Separated from siblings as sent to further camps, where they lived in uncomfortable, humiliating squalor for several years, as the older members of her family died. At 13 when WW2 ends and parents are killed (hit by a train in their truck) within weeks of their release. Jeanne manages to survive (becoming a waitress at 13 and not going back to school until 15) and becomes an ER nurse, marries, adopts a child after being unable to conceive. Her husband was diagnosed with testicular cancer.... rabidly anti Japanese in-laws come to nurse him with her till his death, cursing her as the cause. Adopted son, now 6, doesn't adjust well. Her late husband's in laws continue to berate her enough for her to move to a completely different part of the country. All this by the time she was 26 and she was so much better than fine. She would just dust herself off and work hard. She excelled.
Age 49 and wealthy, happily married, athletic, healthy, settled - she had a mental and physical breakdown her doctors attributed to stress she refused to experience a generation earlier. As her GP said, she was subconsciously waiting for a time to process the stress.
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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.I'm hardly an expert in this area, only a fascinated observer. But 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.
While I am equally interested in the cell function and immune response (actually more interested, as I am a frustrated, un-finished molecular biologist who wound up with only part of a degree only playing on the fringes of medicine) I am also entranced by the neurobiology of us all. We are really just a big bowl of neurotransmitters and jelly in any instance - pain, fatigue, love, birth, death.
I am such a romantic.
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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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We are all so confused about consciousness and free will and agency and being a "big bowl of neurotransmitters and jelly" (again, another phrase I intend to steal and pass off as mine). Pain is real. Pain is chemicals. Pain is in your head, like thoughts. And thoughts are chemicals. Hence thoughts are real. But not in a way that we like to think about because then we would have to deal with an unpleasant thesis (chemicals and electricity and determinism) and antithesis (randomness perturbs the chaos of chemicals and electric potential) or synthesis* (all things considered there isn't a lot of room for my personal agency).**
We like to think we're in charge of our thoughts. And if we're in charge of our thoughts, other people must be in charge of their thoughts. And so if other people think they feel pain, without visible cause, and they're in charge of their thoughts, they can jolly well change their thoughts, and if they can change their thoughts, they must be choosing to be in pain.
The first premise is probably wrong, and the conclusion, and yet I think mostly we operate as though all those items were true. Even people who by training or experience should know better.
The beloved has fibro and suffers from pain. Real hurty painy pain. Although in the long term a search for physical sources is a necessary thing, in the short term it's easier to not let the absence of something you can put your finger on slow you down.
* I think this may be my first quasi-serious use of dialectic ever.
** A dilute solution of ethanol was involved in the composition of this comment. -
Sue,
EEEK the tilt table test and blood pressure
again that was something very popular around about 94/96 as was taking beta blockers.and stress does not cause CFS, it might be one of the triggers, but it's not the cause if only it was that simple.
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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.
Actually, funny you should mention that.... and of course it does depend on the kind of diabetes you mean - whether type 1 diabetes; type 2 diabetes; gestational diabetes or diabetes insidious (nephrological diabetes).
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.
With type 2 diabetes you have enough insulin, but your body is unable to use it.
There has been only one study to date looking at the effects of MBSR in patients with type 2 diabetes. A small, prospective, observational pilot study of 14 patients conducted by Rosenzweig et al.33 looked at the effects of MBSR on measures of A1C, blood pressure, body weight, and psychological symptoms, including anxiety, depression, somatization, and general psychological distress. This uncontrolled study found a reduction in A1C of 0.5% and reduced mean arterial pressure of 6 mmHg; decreases in depression, anxiety, and general psychological distress in patients completing the program were also observed. Analysis suggested that lifestyle changes did not account for the reduction in A1C. Mean body weight did not change for participants, and there were no reported changes in medication, diet, or exercise that could account for the improved glycemic control.
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And so if other people think they feel pain, without visible cause, and they're in charge of their thoughts, they can jolly well change their thoughts, and if they can change their thoughts, they must be choosing to be in pain.
The first premise is probably wrong, and the conclusion, and yet I think mostly we operate as though all those items were true.That's not quite what is meant by pain all being in the brain. Or nocioceptors to be precise - (the high-threshold primary sensory neurons that detect noxious stimuli). Pain results from the processing of neural signals at different levels of the central nervous system.
Whether it's phantom limb pain, chronic pain in the absence of actual injury or infection, or pain from having a hand cut - it is all extremely real and exactly the same from the pain sufferer's point of view.
The very real nature of pain is agreed upon, not doubted. Despite an apparent source of the pain not being there (as in phantom limb pain) there is no one who thinks the pain is "not there" or is any way less real than in someone who actually has a present limb with a terrible wound. The existence of pain is the constant, the physical source is the variable.
You can't exactly control the pain with thoughts as such - mindfulness is, if anything, the absence of thoughts. In Buddhism (and in cognitive therapy actually) the mind is considered empty and thoughts merely phenomena that occur within the mind.
The process of mindfulness as explored by Jon Kabat Zinn is part of what has prompted study into the actual nature of pain.
I had a cat with "phantom pain" but the poor animal certanly experienced it in a very real way. Before she was my cat, she'd been attacked by a dog and had required hours of surgery and more than 100 stitches in her tiny kitten back. By the time I got her she was just fine, not a visible scar, but her previous owner (who had to go overseas if you're wondering why I got her cat) said that brushing fur along her back was out of the question, she would shriek with agony and jump straight in the air. Sides, head, paws, tail - brush away and she was fine - along the spine where the scar tissue was and the poor animal had the same reaction I do when my scars are touched. It's real pain alright, but the message our brains get is not an accurate assessment of the state of the body part it's describing.
Similarly, if you cut open your hand and it hurts, the pain is every bit as much "in your mind" as someone with phantom limb pain or fibromyalgia. It's just that in the case of physical wounds, the message sent - pain - is an accurate assessment of the body part in question.
The experience of pain is very, very real as many sad lab animals would attest, if they could speak.
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Sue,
the mind is considered empty and thoughts merely phenomena that occur within the mind.
I don't think that's cognitive behaviour therapy
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the mind is considered empty and thoughts merely phenomena that occur within the mind.
I don't think that's cognitive behaviour therapy
It isn't? Whoops, my apologies - my unpreparedness is showing - I y just assumed that from hearing (2nd hand from someone who had that kind of therapy) who said getting the notion that our thoughts don't define us and made the leap that was a) part of his therapy and b) evidence that they (cognitive behaviourists) believe the nature of mind to be empty and a different thing from thoughts, which are phenomena that occur within the confines of that empty mind. The control of mind comes not from controlling thoughts, but by allowing them to percolate until they eventually become much, much slower and more focussed, once all the chatter ceases. But that might just be the Buddhists...
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dyan campbell - your step-mum's life is awesome (in the most literal way...)
And thank you for the info apropos how gingivitis can cause all kinds of consquent ill-health.
Aue, I am still stuck with the fact that I cant stand people poking round in my mouth - even me! (This goes back to a time when I was 5, and my back teeth - both sides of my lower jaw - rotted*. They were extracted under gas, and my parents were very consoling & helpful (hell, they even gave me the bribe I wanted, to accept a rubber mask over part of my face: would you believe it was a half-crown (lotsa money back in 1952) block of Cadbury's 'Fruit & Nut' milk chocalate??! But I already had 3 younger siblings and I couldnt eat much of it so- no harm done I'd think, and I'm sure they knew it.)
*My secondary back molars never came in. I have rather less lower jawbone at the back of my mouth than most people...gonna be a puzzle for future archaeologists (unless I'm cremated of course..)
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@JeremyEade
It is not just that most people are appallingly unfit but that modern life is so mollycoddling it is almost impossible to get fit unless you take the time and effort to exercise. And because our lives are so sedentary we really have to exercise a lot to bring us up anywhere near the standards of our forebears. The Greeks made a reconstruction of a bireme, or was it a trireme? and even modern day elite rowers couldn't even approach the speed and endurance ancient sources treat as routine.
We have become really, really soft and we have only the vaguest idea of how soft. If it is patronising to point out reality then I am not apologetic. The CFS disorders didn't exist a generation ago, and they had more viral conditions to get post viral from than we do (another thing we forget).
I have learnt the hard way that I HAVE to exercise. If I don't then
1. I am on heartburn medication full time
2. I am asthmatic, I took 4 weeks out from injury just recently and was wheezing at the end. The sustained deep breathing of exercise stops the fluid accumulating in my lungs.
3. My back locks up in one or both of two places. The last time it happened, when it abated I dug over the front garden (in 3 easy stages) and have not stopped using it since.
4. My skin breaks out.
5. I get sick far more often
6. I have no energy, my limbs feel heavy, I don't sleep well (not physically tired enough).
And that is despite walking to and from the bus stop, taking the stairs at work instead of the lift, going for walks with my wife at the weekend. Not enough, not nearly enough.
When I exercise all of the above either disappears or ceases to be a problem. I am so healthy and my platelet levels so high I have been a platelet donor for the last two years. I seriously live in fear of not being able to exercise. I have flat feet and need to wear orthotics to run, slight shoe wear makes my knees hurt, but still I run.
Before someone accuses me again of trying to portray myself as a superman, I am not, I have found what it is to be truly healthy and it is not just the absence of disease. I am perfectly ordinary. It is simply hard work to get here, hard to maintain it, it takes time and dedication. Our forebears managed it through simply living, we have forgot what that is and it is making us sick.
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Peter, my forebears had severe osteoarthritis both in the Orkneys and here in ANZ: there are young people (skeletal evidence) who died from the side effects (sceptecaemia is one) in both areas. I think you may be forgetting that ancestors generally lived pretty short (and sometimes very nasty) lives...and you are definitely overlooking the fact that not everyone is like you, and doesnt react in the same way to dedicated exercising.
It was a trireme, and may I gently point out that Greek ones werent only crewed by free citzenry - you can whack a lot more effort out of slaves than the most elite rowers (who have almost certainly never handled the oars triremes were propelled by (massive bloody things.)
Annnd, free citizenry serving during the numerous wars with Persia and other places had an incentive we, exercising today, dont have: win, or die, win or become enslaved, win or watch your country be taken over.
I mean - *real* incentive- -
I may be too late for this, but I'm only ticking three of those boxes. I feel as though I'm letting the side down.
I have learnt the hard way that I HAVE to exercise
a) This works for me.
b) Everyone else is just like me.
therefore c) this works for everyone. -
Sue,
I am really enjoying peoples thought and perspectives in this thread and the listening & sharing thank you for those like me that have it and everyone else for their thoughts and perspectives, you have no idea how much i appreciate this thread this weekend.
But Peter I have to say, but in the context of this thread I'm finding your approach a little hurtful. I'm glad for you that you have found your answers but those answers do not work for people with CFS.
CFS is real it's not imaginary and it it not a disease of the 20th century, medically findings of CFS date back to the 1860s
for people with CFS exercise is the one thing that we have to be very mindful and careful of. We stay very tuned into our bodies so we can get the most out of the exercise we are able to do when we are able to do it.
and before you say 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.
that's all I'm going to say about exercise any I'm a little sad i even felt the need to as telling someone with CFS they need exercise is possibly the most hurtful thing you you say. Even if you have the best of intentions
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My partner for many years had CFS. She still does, only I'm no hero and we're no longer together. I didn't doubt the disease, but I didn't understand it either. A thread like this would have helped a lot -- perhaps there was one but I never saw it. I just heard vague diagnoses and medical scepticism. I think the figure about 1 in 10 GPs doubting the syndrome is likely understating the problem: it is one thing for a GP to believe that somebody out there has it and quite another to believe the person in front of you has it. I have experienced sceptical doctors myself (I had to be put on oxygen for 30 minutes after successfully proving to my sceptical doctor I had asthma, a far more banal and self-evident disorder). Perhaps healthy professional scepticism fails to be helpful with such a tricky disease as CFS. Or perhaps GPs need to listen better to patients' stories, rather than treating the body as evidence.
Just seeing a bunch of different voices say similar things helps illustrate what is the disease, what is a coping mechanism, and what is the person (for example, extreme cautiousness about activity being a coping mechanism rather than a frustrating personality trait). And understanding these things helps the other people in your life, because they're also coping, only they're doing it voluntarily, which means their experiences are different, their choices are different, and their compromises are different.
Some awkward facts that nobody wants to face because they don't fit: this is what science looks like when there is a discovery waiting to be made. This disease can teach us something we don't know about how humans work. You would think that would be enough reason to study it, quite apart from the folk who would like some help.
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Talk about letting the side down: I tick *none* of those boxes. Quick, someone tie my right hand behind my back and confer an honourary philosophy degree upon me!
If we're voting on whether we prefer the hardbodies of days of yore, count one for "wimpy lardass with high life expectancy". If it's all the same to you.
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With you on that last comment Danielle!
I tried, for a fortnight, living as the olds here did - with these exceptions - a swannie*,good footwear**, a waterproof sleeping bag, and emergency chocolate/small container of honey/ditto dried chicken stock/aspirin/waterproof matches/ a snapoff knife & a teensy flask of whisky.***Fuck it was uncomfortable! This in the balmy days of late spring (when there's quite a lot of plant food around and some fish runs.) (I didnt snare birds, and I didnt eat mudfish (there's quite a few in the area but they're endangered.) I found you need 2 people to operate a fire-plough. My flint flakes (actually quite old family ones) could help in foodgathering (the snapoff knife was way more efficient but I tried not to use it) inasmuch I was able to make shaky containers for things like mussels & edible greenery.
I missed salt terribly - so I used up all the chicken stock. And the chocolate. And the matches. The aspirin & the whisky &the honey I brought back intact...
* I had to wear something! And, I'm not a weaver!
**I was used to baiting barefoot but I knew walking beaches & bush-tracks barefoot were outside my abilities. And see above-The sleepingbag was because, I told myself, I was doing this alone
-in the old days, usually, there would be at least a few whanau around.I can see why the olds were communal - you had to be, otherwise your life would be short & unpleasant.
Sooo- wimpy lardass with high life expectancy? Yo!
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Some very recent research appeared to have isolated a specific virus but the last thing I heard about that was that this was a long way from being conclusive.
Rob: you mean the retrovirus XMRV, apparently found at a significantly higher rate in the blood CFS sufferers than the general population? It's been in the news again this week. Looks like there is conflicting data, or conflicting interpretation of data. But if true, it could be a breakthrough along the lines of the stomach-ulcer-bacteria one.
Via Roger Ebert's prolix and various twitterfeed, this account of CFS from another sufferer.
Much sympathy and respect for those enduring CFS, FM, and the like. This discussion is so valuable: it's really good to share the knowledge.
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