Dangerous exercise: lessons from dysregulated inflammatory responses to exercise 2007

[fingers2022]

Dr Bell said in an article that when children have ME they will accept that they are not ill and push themselves in a way that adults would not. It is so true.

Mithriel and Willow,
Thanks for sharing your experiences. Would you mind if I use some of this information (anonymously of course) in my campaign to stop a study piloting the Lightning Process for children with ME? I fear that this is exactly what will happen (i.e. experiences similar to yours), especially as the measure of success is stated as school attendance.

Anyway, I'm in danger of changing this thread into another one, so.....

Tomk, thanks for the interesting discussion. I wouldn't necessarily describe myself as an (ex) "elite" athlete, not olympic level, anyway, but up around the top end in triathlon. I became ill after a few months of very heavy cycling in the winter, when I had an achilles tendon problem so couldn't run. That was 20 years ago.

I still exercise when I can (i.e. when I don't have an obvious infection), at a much lower level. It always makes me feel worse physically, but the positive benefits (mental wellbeing, weight control, improved digestion, better body image - vanity!) are still there for me. It's a case of trying to balance it, which I do badly.

I feel a little guilty telling people here that I can exercise, yet still claim to have ME, I hope everyone is OK with that. Or maybe we don't all have the same disease. The PEM is definitely there for me though.

 

[PoetInSF]

I haven't seen much evidence of that e.g. Belgian rehab clinics - over 600 with CFS (Fukuda) finished (average of 41 sessions at centres). Recovery rate was negligible.

Actually, I'm advocating exercise on the basis that it can improve QOL, not that it can help you recover. My personal experience is no more than an annecdote, but regular walk within my limit has been helping me maintain my mood and let me sleep well. That's QOL in my book. I understand though, that some people have such a low reserve that exercise may not be an option, at least till they improve enough to take care of daily living.

If and when you're back at work full-time and have a good life outside work, I'll be more interested.

My recommendation is not to aim at recovery. You can end up crashing regularly when you do that, and your QOL goes to hell. That's probably no different for healthy people: exercise make you feel good and let you sleep well; it's when you have a competitive goal you end up with injuries or worse.

My bottom line: if exercise helps you to recover, that's great. If not, you still can benefit from it in the form of improved QOL.

 

[starryeyes]

I feel a little guilty telling people here that I can exercise, yet still claim to have ME, I hope everyone is OK with that. Or maybe we don't all have the same disease. The PEM is definitely there for me though.

I'm in constant intractable pain and I'm almost totally bedridden, yet sometimes I can still ride a bike, slowly. I used to be able to exercise all I wanted to without noticeable PEM when my CFS was mild. We all have different tolerances, no need to feel bad about it.

 

[Dolphin]

Thanks for the explanation of where you're coming from PoetInSF. I'm still not convinced but I might have been less assertive if you didn’t use the word, “panacea”.

 

[fingers2022]

Actually, I'm advocating exercise on the basis that it can improve QOL, not that it can help you recover. My personal experience is no more than an annecdote, but regular walk within my limit has been helping me maintain my mood and let me sleep well. That's QOL in my book. I understand though, that some people have such a low reserve that exercise may not be an option, at least till they improve enough to take care of daily living.


My recommendation is not to aim at recovery. You can end up crashing regularly when you do that, and your QOL goes to hell. That's probably no different for healthy people: exercise make you feel good and let you sleep well; it's when you have a competitive goal you end up with injuries or worse.

My bottom line: if exercise helps you to recover, that's great. If not, you still can benefit from it in the form of improved QOL.

I agree with this Poet (and thanks TJK for assuaging my guilt!).

I think the problem people are having here is the implied link (not that you are implying it, Poet) to GET etc. My personal theory is that if GET or similar helps, then we're not talking about the same disease. I would propose that it's part of the definition of ME that GET does not work. Although I accept Poet's points about improved QOL, and that's the principle I personally apply too.

 

[Dolphin]

Mithriel and Willow,
Thanks for sharing your experiences. Would you mind if I use some of this information (anonymously of course) in my campaign to stop a study piloting the Lightning Process for children with ME? I fear that this is exactly what will happen (i.e. experiences similar to yours), especially as the measure of success is stated as school attendance.

You could quote:
Pheby D and Saffron L. Risk factors for severe ME/CFS. Biology and Medicine 2009; 1: 50 -74. http://biolmedonline.com/Articles/vol1_4_50-74.pdf

It found people who did physiotherapy in the period before diagnosis and just after diagnosis were more likely to end up with severe M.E.

 

[starryeyes]

Tom,

That study sounds very important for us and amazing. Unfortunately the link doesn't work. Can you fix it?

 

[Mithriel]

Fingers, I have no problem with you using anything I say to stop this LP trial. I think it is horrifying. I would do a statement if you felt it would help.

The Behan study which found damaged mitochondria used runners who had previously managed twenty miles but could now only manage three. (I think anyway, I may be confusing two separate articles).

People with ME, as opposed to CFS, can often manage to exercise and to work. It is only since fatigue became defining that this aspect has been forgotten. One of the cases Ramsay mentions in his book was a colleague who would be fine for a few months then relapse.

It is the pushing beyond what your body is comfortable with that is most likely to cause deterioration. I think the increasing number of people who are bedridden and housebound is due to the emphasis on graded exercise. People naturally want to do more and with the doctors pushing it as a cure it makes them do too much.

Deconditioning is most likely in post viral syndromes, like after flu and ebv, where people never pick up and these are the things that tend to be time limited 2 - 5 years. So deconditioning, wait to see clinic, told to exercise, get better, it all sounds so plausible, but it is not the natural history of ME.

Mithriel

 

[willow]

I had a referral to the National Hospital of Neurology and Neurosurgey and the doctors and nurses there assumed by my presentation that my MS was quite advanced and that i was being tested to map the progression. They were shocked that it was my first set of nerve function tests.

It was one of my worst walking days, and although my tests were abnormal they didn't fit the MS criterea. They were puzzled by me.

I can have flailing limbs on one side of my body and almost paralysis on the other. Very weird, but nowadays i only have that when there's an MCS or EMS trigger, or I over exert my brain (very, very easy) or body, or I don't eat at the right time.

Good work with dispatching the psychologist :victory: Do shrinks, docs and other disbelievers assume we are emotionally ill based on their own pyschological fragility or becuase they are told to think that and lack both critical faculties and compassion? ....As well as protecting their income streams.

Ironically I've seen 2 psychs, and both were great. I didn't see them from 'there's nothing wrong with you' referral, 1 was checking my cognitive state and the other worked privately with children with Autism etc. His physical testing showed I have the same neuro symptoms as many of the children he works with. Bevahiourally I don't as I understand the consequences of my behaviours so avoid sitautions that would push me too far and also bring out the more MS-type symptoms.

I've had a few test but wonder about the wisdom of some of it. I certainly wouldn't have hospital or invasive testing again. Not that I'd go to a hospital in any circumstance, I'd rather die at home in relative peace than be tortured to it.

I've wondered about hyberbaric oxygen but in recent years sitting in a public space with others exacerbates symptoms in itself.

Somehow this past year I've been able to see someone who uses a homeopathic treatment. Cognitively homeopathy doesn't make sense to me but surprisingly I am seeing some benefits. Sometimes I even feel subtle changes with individual remedies. One was like being hit with a truck, so it's not always good!

The bit that interests me is that pesticide keeps coming up as my main toxicity problem, and most of the support is for different areas of my brain. Can't help thinking that most work by affecting nerve function. We have treated Coxsackie and also EBV, how successfully I've no idea, but otherwise it's been parasites and bacteria. It surprised me. Also that I've felt changes in my gut, I thought if I adherred to my diet that my gut worked pretty well- now it seems not!

Good to exchange stories with you Mithriel, though I'd prefer we exchanged stories of improvement and recovery! perhaps if we change our mindsets

 

[willow]

Fingers, Say whatever you like. The ruder the better.

Seriously I'd also look at the critques of studies and tests by Piaget and other child development names.... I think there's another I want to mention more but, eek the grey matter isn't hacking it this morning. Anyway, those critiques argue that most children want to please adults, and will go against their own better judgement to defer to the wisdom or guidance of adults.

And imagine those children. Pressure form their parents who want them to be well, pressure from their peer group, their own desire to be well, their parents possibly under pressure or implied consequences if they don't take part in the test, and then the LP folk directing the children to believe and not voice negativeity. Some of these children might still believe in Father Christmas, what does that imply about their stage of emotional and cognitve development and hence ability to protect their best interests.

I'm wittering on because thinking about it tightens my chest, blows my brain and too many thoughts rise up and spew out.

Terrifying.

As an adult I had a couple of consults with a child development pysch. He told me that on the basis they want to be normal and fit in, children will generally go to enormous lengths to supress and control their symptoms.

I'm now empty of words.

 

[willow]

I wouldn't necessarily describe myself as an (ex) "elite" athlete, not olympic level, anyway, but up around the top end in triathlon.

Fingers, you might like to know that as well as working with chronic conditions like Autism, Amy Yasko also works with a group elite athletes. If I've got this right she's interested becuase sometimes they show some of the same patterns of biochemical imbalance that chronics do, increased requirement for B12, aminos etc, in the athletes case due to increased usage. Anyway, i think she likes to compare and contrast... Though it's definitely a think.

I love being physically active, though wouldn't be able to do any standard exercise jog etc. There's specific things I can do and only when my body is capable, but genetically I have been given strong arms and power thighs and they being let out to play when my electrics are working well.

 

[fingers2022]

Fingers, you might like to know that as well as working with chronic conditions like Autism, Amy Yasko also works with a group elite athletes. If I've got this right she's interested becuase sometimes they show some of the same patterns of biochemical imbalance that chronics do, increased requirement for B12, aminos etc, in the athletes case due to increased usage. Anyway, i think she likes to compare and contrast... Though it's definitely a think.

I love being physically active, though wouldn't be able to do any standard exercise jog etc. There's specific things I can do and only when my body is capable, but genetically I have been given strong arms and power thighs and they being let out to play when my electrics are working well.

Thanks for the responses Willow (& Mithriel).

The stuff you say about children certainly induces anger and concern.

Not sure about the compaing of athletes with ME sufferers. My personal experience is that the sensations experienced when in heavy training are nothing like those experienced when suffering from ME. People sometimes describe it as feeling like you've just run a marathon and have flu. Nope, both of these things feel quite different (for me anyway).

When I was first ill I had what I would describe as "exhaustion" - the nearest I can get to explaining this is that I felt like my central nervous system was f***ed. The feeling after doing 9 or 10 hours of an Ironman triathlon is nothing like this whatsoever.

 

[willow]

Not sure about the compaing of athletes with ME sufferers.

ooops ... No, I wasn't suggesting that Amy Yasko thought the symptoms of overtraining and ME were similar, more that she found it interesting to compare biochemical markers of healthy athletes with nutrient hungry bodies to to those with chronic conditions. Healthy athletes with similar biochemical needs respond quickly and that gives her insights that she wouldn't get from working only with people with more complex conditions.

Sorry, there's more but can't think how to explain it.

 

[PoetInSF]

I would propose that it's part of the definition of ME that GET does not work.

Well, I'll have to respectfully disagree with that, fingers. Meager as it is, there is some evidence that exercise help some people. That's more than we can say for other therapies for now. I would leave the possibility open that exercise therapy, if carefully done as Bruce Campbell has done, just MAY help SOME people recover.

 

[fingers2022]

Well, I'll have to respectfully disagree with that, fingers. Meager as it is, there is some evidence that exercise help some people. That's more than we can say for other therapies for now. I would leave the possibility open that exercise therapy, if carefully done as Bruce Campbell has done, just MAY help SOME people recover.

Thought we'd already been round that one and were violently agreeing, Poet:Retro smile:

I thought we'd said, yes it can help with QOL, and therefore (possibly indirectly) with recovery. But not as a therapy in itself.

I think this will come out in the wash if/when we ever get to understanding root causes. If we're talking ongoing infection, like a retrovirus, say, then it's unlikely that GET would fix that. If we're back in the Wessley camp of number plates and wonky brain mechanisms, then maybe.

 

[fingers2022]

Well, I'll have to respectfully disagree with that, fingers. Meager as it is, there is some evidence that exercise help some people. That's more than we can say for other therapies for now. I would leave the possibility open that exercise therapy, if carefully done as Bruce Campbell has done, just MAY help SOME people recover.

Sorry, could you tell more about Bruce Campbell, I don't know that one?

 

[Dolphin]

Tom,

That study sounds very important for us and amazing. Unfortunately the link doesn't work. Can you fix it?

Thanks for letting me know. Done.

 

[Dolphin]

Well, I'll have to respectfully disagree with that, fingers. Meager as it is, there is some evidence that exercise help some people. That's more than we can say for other therapies for now. I would leave the possibility open that exercise therapy, if carefully done as Bruce Campbell has done, just MAY help SOME people recover.

In an earlier clarification in this thread, you said: “Actually, I'm advocating exercise on the basis that it can improve QOL, not that it can help you recover.”

Bruce Campbell’s course is more like a pacing program from what I’ve seen.

 

[starryeyes]

Thanks for fixing the links Tom.

 

[Mithriel]

ME is defined by exercise making you worse. Ramsay said that exercise can only be used to sort out those with ME from those who seem to have it but don't.

It is maybe just about possible that there is an ME sufferer out there who is doing less than they could be so encouragement to exercise couldlet them realise thye could be doing more but the vast majority including everyone I have ever known tend to do too much rather than too little.

Epidemic or classic Coxsackie B induced ME - never heard of it working in almost forty years of following the research and the patient groups.

I can't think of any way that exercise could be a treatment except for deconditioning and the vast majority of people with ME are not deconditioned. This who are are the severely ill and exercise will not reverse the damage to their systems.

I have long suspected that some people get a long term EBV that isn't actually ME and they are the ones who go from being bedbound to climbing mountains. Once their infection is contained by their bodies exercise may help them recover from the effects of long term illness. They would be in the same position as people recovering from a broken leg.

People with ME or ME/CFS have a continuing ongoing illness and are usually exercising at their limit.

Mithriel