Weight Training

[Carter Burke]

Well.. I do think it's very important to accept that CFS probably *isn't* a disease.

The way people get ill, and the way they tend to get better, just don't appear very disease-like. A great many people do get better with rest alone (especially if they begin resting early enough), others get there once they've had mercury fillings removed, or identified food intolerances, or got B12 or magnesium levels up... There are documented cases of people completely resolving the condition with sweating or breathing protocols.

It's one reason (amongst many) I'm so dubious of this recent focus on XMRV. (Correlation doesn't equal causation, and most people get well without antivirals.)

Rest is quite different from just not being active, of course. Whenever I'm not actively doing something, I'm lying down with my feet up and really resting. I've had to find a balance between complete rest and light activity, and you really don't need a great deal of activity to avoid deconditioning. I'd say you're at much greater risk when your muscle mitochondria are failing, because then any exertion/exercise is going to be adding to the damage. But I certainly try to stay active enough to avoid blood clots or hypovolemia.

I liken CFS to fixing bad finances. You've got x number of outgoings/burdens and y capacity to earn/produce energy/heal. (And the whole condition's a vicious circle. It's not something you ever actually HAVE or don't have, in my opinion.)

What I've found is that every little decision I make, from dietary changes to supplement use to exertion, influences my trend. And there's a pretty narrow window on a lot of these things - which has become apparent through monitoring - where too little or too much can turn any recovery phase into a decline. So I have found I've got complete control over the condition, it's just VERY subtle and slow, on a day to day/week to week basis.

I do think in stubborn cases, there's very likely to be a central lifestyle or nutritional factor which you've missed. Whether it's mercury, magnesium deficiency, some environmental toxin, magnetic fields, even, probably most likely for most of us: dietary intolerances. I'm eating little more than white rice and chicken right now. Should've been the first step I took, and my specialist said this but I've somehow managed to be really lazy on that one.

The thing with charting it all is, even on a lot of supplements and with detox regimes, the improvement is WAY too subtle, even month to month, to notice.

I said in that thread, in my case it works out to about 1.4 additional steps/day. Which sounds incredibly slow, but, then, when you're a PWC at 500 steps/day, you're pretty severely impaired; when you're at 1000 steps/day (without any acute symptoms), you're really half as ill.

I took my exertion right back when I started on supplements, and kept it around 500-700 steps/day (before I was recording my results) for about 3 months to get my vitamin levels settled and wait until the fatigue eased a bit.

Recently I crossed the 2,000 steps/day point, and where 1 1/2 years ago, seeing a friend for an hour would leave me exhausted and needing to lie down, I can now go out for 4-5 hours, have a few drinks, chat and not even look tired, then go home and not pay for it the next day.

A huge difference really. But it's come down to balancing my regime to achieve that 1.4 additional steps/day. If I'd been on graded exercise, I'd have been aiming for, probably 5% improvement/week, at least, and then all I'd have done (as I have done 1000x before) is pushed myself into worse mitochondrial failure at some point, where the lines cross. Then gone backwards.

At my worst I couldn't walk to the toilet. But back then I was generally much more up and down... Now I'm consistent, my body can heal and repair.

I'm convinced there's no magic bullet; no point in time when you ever went from *not having* CFS to having it, and no point where you'll wake up one day without it. I just think it's a general state of cell-level health, and a number of common vicious circles we tend to get into.

I also think as long as you're not actually getting worse, you're basically getting better. If the body can achieve any sort of homeostasis, it means your capacity to repair is matching the damage and interest rates. So then anything you do to help this process along is helping weigh things more in your favour.

Exercise is always going to be a double-edged sword there. The only way you'll convince me it's a good idea is if you can show it lead to solid, long-term improvements in activity and reductions in symptoms... For me, it's always been short-term, then back at square one.

 

[Wonko]

Well.. I do think it's very important to accept that CFS probably *isn't* a disease.

OT I know but this is probably the fundamental point where we start to differ - IMO refusing to accept you are ill in the face of overwhelming evidence to the contrary is a false/unhelpful illness belief in itself and is likely to lead to "treatment" problems at some point

but as I said above I really hope your right, that you continue to improve and that you reach a point where you no longer have CFS - and that it never bothers you again.

best wishes

 

[Athene]

Let me clarify

Hi Fingers,

I probably wasn't clear enough in my message.

YOU CANNOT EXERCISE YOUR WAY TO BETTER HEALTH WITH THIS ILLNESS.

Exercise is something you can consider doing only AFTER you have been lying in bed for so long that you are already much better.

In my case this was 1 year (first time around) and then I gradually worked up to walking around the house, then down the garden and eventually I could creep off to the newsagent's occasionally once I had regained the mental capacity to speak and read. About 3 years after this I was going for walks that lasted ten minutes. I gradually gained more stamina and eventually after 5 years from onset, I was working full time and could walk for one hour at a go. That was when I decided to try doing weights and I built up from a ten minute workout to a 50 minute one over a period of 6 months.

I was not gradually pushing myself up a "performance curve" to increase what I could do by exercising my way there. Quite the opposite. I was cautiously increasing my activity level as my health improved, but always staying within my safe limit. If you go beyond your safe limit once, you crash again. When I was working full time I made it clear that sometimes I needed a rest, unforeseeably, and I would push my computer back and sleep at my desk. I was lucky enough to have the coolest boss in the world.

There is no such thing as being housebound with this illness yet doing weights. Either you are in remission, or you are in sh1t creek without a paddle. You cannot occupy two places at once.

Saying that peole who are lucky enough to be in remission do not have the same illness as the bedbound ones is unfounded.
And saying that this is "not a real illness" because people can go into remission with it is also illogical - people with MS go into remission, people with cancer go into remisison, people with Systemic Lupus erythematosus go into remisison..... the list is very long and these are all "real" illnesses.

I think people take two paths with this illness. They either
A) have a really supportive family who can remove every burden of responsibility and financial worry so they can just rest till they go into remission.
OR
B) They simply cannot get rid of all their commitments and they are forced to trudge through life never having the chance to get out of this terrible cess pit of suffering and despair.

For 20 years I was in category A and spent more than half the time in good enough remission to work, and the rest of it in my old bedroom at my parent's house.
5 years ago I got married and had a kid and now i am in category B and totally desperate, too weak to open a plastic bottle of mineral water for myself because I cannot snap the safety top yet I have to somehow drive my kid to nursery every day and collect him because my husband works full time to support us all.
I know how I recovered before, I know what it takes to get into remission and I know that I will probably spend the rest of my life in this cr@p condition because I wanted a baby more than anything and so now I am stuck in this situation.

If there is any way you can live your life in category A then do it because I would bet you anything that eventually you will go into remission.
Good luck and love and best wishes to all of you.

 

[Michael Dessin]

"YOU CANNOT EXERCISE YOUR WAY TO BETTER HEALTH WITH THIS ILLNESS." Athene

AGREE!

However I do not agree that rest alone will lead to significant recovery....It is beneficial though

Dont expect to lay in bed for years on end and recover because you have rested.

 

[fingers2022]

Hi Fingers,

I probably wasn't clear enough in my message.

YOU CANNOT EXERCISE YOUR WAY TO BETTER HEALTH WITH THIS ILLNESS.

Thanks Athene, I've shortened the quote, but some good words in your post.

Some good sense in posts from Mike and Carter too. Wonko, I struggle with your stuff a bit, sometimes a bit long and rambling, but I have to confess I haven't concentrated on it very well, so more a reflection on me than you.

OK, I think I agree with these recent posts, particularly Mike's - I choose to exercise not because it will get me well, but because it's been a part of my life since I could breathe. I also accept a possible endorphin addiction, and I still get that nice feeling immediately after exercise as long as I'm in reasonable nick before I start. PEM sets in after a few hours, maybe when the endorphins have dissipated?

BUT, sorry folks, nobody has yet answered the anaerobic bit so we've gone way off topic

 

[Athene]

I realied after that long rant of mine I forgot to comment on the anaerobic thing. It bewilders me because it contradicts what I have been told by doctors.

My father died of pulmonary fibrosis and the docs said that body cells use oxygen to respire unless there is no available oxygen, then they respire anaerobically briefly, and if no oxygen comes along in time, they die.

Healthy people have blood oxygen saturation of 100. When they exercise, their heart speeds up and they breathe more deeply to maintain 100. Even a slight dip to 97 is hypoxic and is pathological. There is a formula that can work out how fast your heart should go for necessary oxygen delivery.

In people with ME, the heart never gets up to the required speed so exercise always makes us go hypoxic, rapidly. I did 4 minutes on an exercise bike, nearly suffocated and my oxygen went down to 80. (But hurray my heart rhythm was regular the whole time because of that FANTASTIC heart surgeon.... a different story) Apparently 80 is relatively bad for folks with ME - I mean for the ones that walk into the doctor's rather than get wheeled in. The doctor and nurse held their arms out as I got off the bike because they were convinced I would conk out!

Hypoxia also damages the brain. When my Dad went down to 70 the doctors were astonished he could haev a rational conversation because most people are incoherent at this point. Each time people with ME are too active and make themselves hypoxic they also deprive their brains of oxygen proportionately and this causes brain cell death. It takes a long time for noticeable damage, because the body hurts so each time that you stop before you can do yourself much harm.

Thus the idea of "anaerobic exercise" would appear to be impossible. Exercise in a state of anaerobic cell respiration can take place for a very limited amount of time and leads to cell death.

Like I said before, with this illnes, you can do as much as you can do, and no more.

If you want a more scientific explanation of all this, there are several good scholarly articles on the canadian ME association website.

 

[Michael Dessin]

Athene..great freaking post!!!!!!!!!!!!!!!

Yes, the best way I could describe the feeling with exercise, is a feeling of my brain being deprived of oxygen or lack of blood to the brain with the malaise starting during or right after exercise.

Thanks for sharing all this info, everyone.

Mike

 

[Carter Burke]

OT I know but this is probably the fundamental point where we start to differ - IMO refusing to accept you are ill in the face of overwhelming evidence to the contrary is a false/unhelpful illness belief in itself and is likely to lead to "treatment" problems at some point

but as I said above I really hope your right, that you continue to improve and that you reach a point where you no longer have CFS - and that it never bothers you again.

best wishes

Well you can be very unwell without having a 'disease'.

I think the problem with the term 'disease' is that we end up thinking of CFS in the same way we'd think of MS or Lou Gehrig disease - as something that's come in and taken over our bodies, and as something which goes through phases of being active and in remission.

I don't buy that. There *are* no blood test for "CFS", there are only blood tests which show how the body chemistry/cell function has been altered/impaired.

A syndrome is a better way of looking at it, I think. It's a state of health you arrive at in which normal homeostasis is impaired. You're still basically healthy, you've just got different limits and often a number of secondary problems... (Most people find there is a level of activity they can find where symptoms reduce significantly, and then the art of recovery is staying like that while increasing activity at the body's own pace.)


A syndrome I had prior to CFS was hyperventilation syndrome. It felt like a disease. I could barely breathe, it was comparable to severe asthma, I'd go 5 days straight without sleep because I'd stop breathing as soon as I dropped off, or wake up with a 180BPM pulse, I'd get panic attacks at the drop of a hat, feel faint walking 50 yards, hypoglycemia which almost knocked me off my feet, allergy attacks like you wouldn't believe from every pollen/spore around...

Horrible condition. I was on various drugs, full asthma medication, etc. But I was wrong to manage symptoms and think of it as a disease. I was diagnosed as: asthma and panic disorder.

When I discovered hyperventilation syndrome, I realised how the condition sustained, so I worked on rebalancing my breathing (with Buteyko technique), rehabituating myself to normal CO2 concentrations, and in a few months 90% of the symptoms had gone. The rest of my recovery was replacing minerals like magnesium and zinc which the syndrome tends to deplete.

So: severe symptoms, totally impaired lifestyle, not really responding to drugs, but not a disease. (In fact, something I could treat by modifying something quite simple and allowing my body to rebalance.)


Why do so many Type A personalities get CFS and then have such a hard time shifting it?

Either there's some genetic component, and it just happens to be the same one which makes us Type A personalities, OR, our attitudes and approaches to life actually play a major part in these kind of conditions.

It's why conventional medicine's been so useless at dealing with CFS. It's really only geared towards treating 'diseases'. CFS has never behaved like a disease, I'd call it a lifestyle illness. (In severe cases, I think it's justifiable calling it a mitochondrial disease, and then there may just be genetic factors or undiagnosed health problems which make normal mitochondrial function very difficult or impossible. Thinking of cases of people who are totally incapacitated. But for the rest of us, I can see why some people don't get better, for all the effort they put in, they just haven't learnt how to recover. I'd get 10% better; feel 20% better; do 30% more; then wind up 40% worse again 2 months later... Over and over. It took my specialist to show me how I was keeping myself ill - would I have ever figured that out on my own? I doubt it. I'm just hardwired to behave like that.)


Do totally agree with you on the creating new muscle mitochondria btw. I just think you need to be significantly better before the body's going to actually benefit from any additional stress - all you're likely to do is deplete already depleted BCAAs and glutamine. I think bodybuilders tend to do quite well with CFS because they're such supplement junkies though - and almost everything they take would benefit CFS. They're often experts at dealing with overtraining syndrome (which *is* short-term CFS in my opinion).

 

[Carter Burke]

"YOU CANNOT EXERCISE YOUR WAY TO BETTER HEALTH WITH THIS ILLNESS." Athene

AGREE!

However I do not agree that rest alone will lead to significant recovery....It is beneficial though

Dont expect to lay in bed for years on end and recover because you have rested.

Two friends of mine, and a well-known psychologist over here, Susan Blackmore, got well by basically laying in bed for a year as soon as they came down with symptoms.

I think normal people shift in and out of "CFS" all the time through over-work, over-stress, it's just their natural response is to hibernate as soon as that starts to happen. Whereas us Type As keep pushing, then see recovery like training for a marathon.

I noticed this when I was a personal trainer. An ex-partner of mine would push and push at work, get stressed, drink too much at weekends, and often wind up at the end of the day completely exhausted; aching muscles; unable to think straight; unable to walk up stairs; etc. and I often thought, "This is CFS"... But she never got ill. She just got on with life like everyone else. Probably overstressed, but not chronically ill... And a few days away in Spain and she'd be back to 100%.

The difference was so clear in the gym. When I exercise, I don't feel I've got limits. I'll keep doing push-ups until my arms won't physically let me do any more. I can quite easily stay on a treadmill and not feel any signs of tiredness until I start to feel like I'm going to pass out.

That is not how normal people are. This ex of mine would do 3 push-ups and collapse in a pathetic heap. I'd encourage her and push her, and she'd knock out another 15... That's why people need personal trainers. Their body's can DO 10x what they feel like they can do, they're just hardwired to perceive effort differently. (My theory!)

So when my ex was exhausted from work and collapsing on the stairs, she was probably getting the feedback she needed from her body which told her to rest up.

I NEVER got like that.

I'd work 9 hours, go to the gym, go out drinking, and never feel tired.

But we've got the same bodies. My ex could never have pushed herself into CFS because she'd be exhausted and hauled up in bed for 6 months before she was even half-way there.

 

[Knackered]

My ex could never have pushed herself into CFS because she'd be exhausted and hauled up in bed for 6 months before she was even half-way there.

Do you think this is applicable to everyone with CFS?

 

[Michael Dessin]

Yes, there are instances when immediete long term bed rest right after onset, in which the patient recovers.

The problem is, that usually pertains to the people who come down with ME and are so sick off the bat, they have no other choice but to lay in bed.

In many cases, folks are more mild at the beginning of the illness after their initial flu like illness..... and try to continue to push through daily living, as a result they get to a point that strictly bed rest will not be enough to recover.

Plus, most of the time when we initially get sick with ME we have no idea we have it and that bed rest is the best way to go after onset.

 

[Wonko]

@Carter

most people with broken legs can find a level of activity at which, while less than their former performance, they can cope day to day - it doesnt mean their legs arent broken

sorry it's a trite example but it's been a hard week (and no I havent lifted as I needed the energy elsewhere) and I dont have the resources to refute your IMO simplistic view of M.E. in a detailed fashion - you seem preocupied with the idea that fatigue is the definining symptom of "CFS" - it isnt - and whilst action to improve function/symptoms and management ARE helpful they dont cure anything

but thats just my point of view - your entiled to yours - but please dont tell me that I'm just in the same state as someone who's worked too hard for a few months - I used ot have a life - I know what that feels like - it aint the same - not even close

lol @Knackered - definately startign to like you

 

[fingers2022]

...and I you too, Wonko. It takes a while to get to know people, especially with this restricted form of communication. You'll have to come round and we'll push some iron some time, have a couple of pints whilst the endorphins are stll flowing, then die. It'll be worth it.

F

 

[Carter Burke]

Do you think this is applicable to everyone with CFS?

Well I think the vast majority of cases come on, either gradually or suddenly, in people who are used to pushing themselves.

I think perception of effort could be the central factor which determines who tends to get the condition and who doesn't.

Yes, there are instances when immediete long term bed rest right after onset, in which the patient recovers.

The problem is, that usually pertains to the people who come down with ME and are so sick off the bat, they have no other choice but to lay in bed.

In many cases, folks are more mild at the beginning of the illness after their initial flu like illness..... and try to continue to push through daily living, as a result they get to a point that strictly bed rest will not be enough to recover.

Plus, most of the time when we initially get sick with ME we have no idea we have it and that bed rest is the best way to go after onset.

Yeah. I was a slow onset. So I can't blame myself for not doing that - although I'm certain if I'd taken it easier right at the beginning I'd have got better much quicker, or staved it off altogether.

I've just noticed what seems like a pathetic attitude to tiredness/exhaustion/exercise/colds/etc. which OTHER people seem to have when you spend a lot of time around them. Almost melodramatic. Whereas people like me, and people I've known who've come down with CFS, have always pushed through things because (I think) we don't get the same signals telling us to slow down early.

Pre-CFS, I don't remember having a cold/flu which left me confined to bed for 3-4 days since I was maybe 10 years old, whereas a lot of people get these two or three times a year.

Just my own theory, but just as we've all got different pain thresholds - yet we all bleed/cut pretty much the same - I think it's conceivable we all perceive effort/exhaustion differently. Leaving some of us more prone to driving ourselves into mitochondrial failure, and the associated problems/vicious circles.

@Carter

most people with broken legs can find a level of activity at which, while less than their former performance, they can cope day to day - it doesnt mean their legs arent broken

sorry it's a trite example but it's been a hard week (and no I havent lifted as I needed the energy elsewhere) and I dont have the resources to refute your IMO simplistic view of M.E. in a detailed fashion - you seem preocupied with the idea that fatigue is the definining symptom of "CFS" - it isnt - and whilst action to improve function/symptoms and management ARE helpful they dont cure anything

but thats just my point of view - your entiled to yours - but please dont tell me that I'm just in the same state as someone who's worked too hard for a few months - I used ot have a life - I know what that feels like - it aint the same - not even close

lol @Knackered - definately startign to like you

Well strictly speaking "chronic fatigue" is a symptom.

It can be caused different things, or a combination of different things.

(New one on me Undiagnosed fructose malabsorption (very common condition) can cause fatigue, hypoglycemia, dizziness, depression, etc. and longer term can lead to various nutritional deficiencies, which can lead to all sorts of other secondary problems and immune system problems, etc.

Take a relatively mild problem - we've probably all got at least 2 or 3 - add in a little too much stress, and you can tip the body into a state of impaired health relatively easily. (It actually amazes me more people don't get CFS. Going back to my previous post, I think perception of effort and collapsing long before we reach physical collapse is what protects most people.)

Many people think CFS, itself, is the protective mechanism which stops us pushing ourselves into total failure. Animals don't get CFS; they can simply push themselves into cellular/organ failure from overwork. We've got this protective mechanism.


I know it can be easier to think of CFS as a 'disease', because of course the symptoms can be acute and seem totally out of our control, but I think underestimating the cumulative effects of stress, lack of rest, nutritional intolerances/deficiencies, environmental toxins, etc. and the vicious circles these things can set up, means you're much LESS likely to find the right path to recovery.

 

[Knackered]

What do you make of the XMRV research Carter?

 

[flex]

Carter

as I continued to read your posts your reality became more and more divorced from everyone else on this site. The fact that you appear to state you drove yourself to a nervous breakdown by over working, then going out drinking and pushing yourself to breaking point in the Gym is evidence enough for me to believe you are relating to the wrong people. Your type A personality thing is yet another example of the void in your understanding of the people you are addressing.

"CFS is not a disease cos we don't have a blood test for it". What? Where is the lab that tests MS patients blood to confirm the disease? Or Parkinson's or ALS? It is impossible to have a single diagnostic blood test until you have the full understanding of disease causation. As for me being a "type A" personality, believe me, that was never the case, unless of course you are here to tell us all that we all are and just don't realise it. No doubt if it wasn't our type A personality that drove us to this you, along with contradictory psych babble, will tell us that it is because we are inactive and deconditioned. The two theories are worlds apart and highlight the nonsensical approach of such protagonists.

I am assuming you understand that aids existed before they validated a single blood test to confirm it. How about MS, is that still the malingerers charter, run and demonised by psychiatrists?

The description you are offering of your own situation almost sounds certainly not to be a disease like the neuro immune disease ME coded by the WHO and you have confirmed, that in your case and opinion that is true. It also appears to be the case that you are removing yourself from being identified by the 5000 worldwide papers on the disease ME and its bio markers.

I can just imagine someone with the lifestyle you have described here and the unfortunate issues it lead to going onto an aids forum and taking the same approach would not be given more than the time of day.

Please learn to distinguish between chronic fatigue and ME, especially when you yourself have already discovered and admitted the causation of your chronic fatigue.

 

[Knackered]

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[Knackered]

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[Knackered]

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[Knackered]

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