has anyone really benefited ie cured by exercise?

[stridor]

I think that it is somewhat arbitrary to disallow exercise as being a part of recovery. I think that I was pretty clear that a degree of recovery is necessary before one can undertake exercise or it puts us at risk of "chewing up DNA" - or however I put it.
At some point however, careful and graduated exercise will encourage the cells to produce more mitochondria. As well, exercise is one of the few things known to increase BDNF = brain-derived neurotrophic factor which helps the brain generate more connectivity and communication between neurons. In these ways, exercise can contribute to the recovery of ME symptoms.

 

[justy]

While I'm sure there is a way to link, I can't figure it out. Its on the CFIDS association of America facebook page, just a few lists from the top https://m.facebook.com/CFIDSAssn not sure if that's the actual link or not

This is the same facebook page as is already being discussed on another thread here:

sorry I cant find the link - its the mecfs safe exrcise group. I think started by a member here.

 

[Undisclosed]

This is the same facebook page as is already being discussed on another thread here:

sorry I cant find the link - its the mecfs safe exrcise group. I think started by a member here.

The link is -- https://www.facebook.com/groups/mecfssafeexercise/?refid=17

 

[Mij]

I think that it is somewhat arbitrary to disallow exercise as being a part of recovery. I think that I was pretty clear that a degree of recovery is necessary before one can undertake exercise or it puts us at risk of "chewing up DNA" - or however I put it.
At some point however, careful and graduated exercise will encourage the cells to produce more mitochondria. As well, exercise is one of the few things known to increase BDNF = brain-derived neurotrophic factor which helps the brain generate more connectivity and communication between neurons. In these ways, exercise can contribute to the recovery of ME symptoms.

But how do we really know if this is occurring with ME patients? If our system is broken (for lack of a better word) on so many levels, how do we know for sure if we produce more mitos? Particularily when we are in a high oxidative stress state? At least I was last time on my OAT and Antioxidants status. Of course exercise in small amounts is beneficial for general help, it helps improve circulation, keep joints flexible, improves mood etc, but I wonder if without getting to a point of PEM whether it's a good idea. I'd like to know this.

 

[SOC]

I think that it is somewhat arbitrary to disallow exercise as being a part of recovery. I think that I was pretty clear that a degree of recovery is necessary before one can undertake exercise or it puts us at risk of "chewing up DNA" - or however I put it.
At some point however, careful and graduated exercise will encourage the cells to produce more mitochondria. As well, exercise is one of the few things known to increase BDNF = brain-derived neurotrophic factor which helps the brain generate more connectivity and communication between neurons. In these ways, exercise can contribute to the recovery of ME symptoms.

Can you give us a link to some evidence that "graduated exercise will encourage the cells to produce more mitochondria" in people with ME? What does BDNF have to do with ME? How does increasing it cure ME symptoms?

Assuming that because something is helpful to healthy people it should automatically be beneficial to people with ME is not wise, especially when that something has to do with exercise or mitochondria.

I have seen no scientific evidence that shows that exercise leads to a cure for ME.

Certainly, PWME who are enough improved to work and perform functions of daily living could benefit from conventional exercise for health reasons that are not related to ME -- the same reasons healthy people benefit from exercise. That has nothing to do with ME.

I'm still hoping that those who are claiming improvements in their ME due to exercise will tell us
(1) at what stage of the illness they found exercise improved ME -- mild, moderate, severe?
(2) how bad was their PEM when they started exercising -- how much could they do before PEM set in?
(3) how certain they are they have ME as opposed to chronic fatigue -- where and by whom they were diagnosed?
(4) what kind and how much exercise did they start with and how did they increase incrementally?

Answers to these questions would give the rest of us some sense of when and under what circumstances conventional exercise might be beneficial.

I'm comparing this to other treatments such as antivirals. I can say, "Oh yes, antivirals really improved my ME." but that doesn't mean they are beneficial to everybody with ME. There are particular situations in which antivirals work. Other patients need to know if they are in that situation before they can determine whether antivirals might work for them. To suggest that because they work for me, they should work for everyone diagnosed with ME or CFS would be illogical and stupid.

The same is true for conventional exercise, which is known to cause a decline in the health of PWME. If it is improving ME in some patients, it is critical to know under exactly what conditions, or with which subset of patients, it is working.

 

[lansbergen]

At some point however, careful and graduated exercise will encourage the cells to produce more mitochondria. .

How do you know more mitochondria are beneficial for ME? More mitochondria producing more superoxide knowing with the inferction I suspect SOD2 is impaired.

 

[manna]

there was a time, about 10 years ago, when I was able to manage a tai chi class-- pre MCS. i think i attended about 10-15. after each class i would be fairly ill for about 2 days but better after that, as it was a detox feeling so an improvement. which i didn't clearly see that at the time. i think you benefit from some kind of energy share. the teacher would place new members in the centre of the classs, so they were surrounded. also at the end of the class we stood in a circle in a certain position and the teacher would adjust your hands slightly whilst inroducing or balancing some kind of energy in your system.

i just wish i had the stregth to complete a class now..or that id never stopped going,,why i did i don't know.. difference with tai chi is that it works on the spiralling energy of the universe and these suck and draw energy to themselves via being implosive (alkaline, anaerobic, cooling) as opposed to explosive (acid, aerobic, heating) exercise. the amount of aerobic exercise you do is dependant on reserves of energy. my experience is that the ability to do aerobic stuff, like hill walking, comes last and should be avoided tilll your certain everythings cleared. i can G.E.T. myself upto being able to walk further but it is never without negative affects on my body, namely much pooorer digestion.

i have found that once i have broke a sweat,generally at about 200 metres, then ive lost digestion for the day. better to take that little energy and send it inwards, via tai chi, to the bones and organs than just purely outward (aerobic explosive) to the muscles alone. i once read of an me/cfs sufferer who, it was claimed, was healed whilst attending the class of one fairly notorious tai chi "master".

there was one tai chi organisation, in the uk, who were working with m.s. sufferers in some way and were claiming cures in some instances. she told me this over the phone, nice lady. knowing what i think i know about it i think it has great potential, dependant on your teachers level and skill and you're ability to stand for half an hour. if you can't some teachers practice healing too and can simply introduce the energy as if you did and your body uses it as and where it needs it. i have seen other articles on tai chi and its great affect on movement disorders. but you have to be able to complete the class which makes it out of bounds to most/many

 

[GracieJ]

If exercise was a key ingredient in getting better, I would be able to increase past a two-mile walk. There are still factors holding me back, and overdoing puts me back in a push-crash cycle. It is like always spending to the edge of an income, small or large - you are just broke at another level. My plan is to not be "broke" in my energy pocketbook; it is still a management challenge.

Retirement age for my age group is 67 now, not 65. My brothers are sure I will opt out at 62. I would be crazy to do that in my circumstances, but it is just as crazy to "plan" to make it to 67 or 68 working. We can shoot for it, hope for it, "plan" for it, but the reality is I have to get through with unknown factors. There is my "proof" right there about exercise not being the cure. If it were, I would not be living with such uncertainty, but would be living with the same risk factors as any other working adult. My life feels precarious at times.

@manna I use energy medicine and love it. I do not say much on it here, as it is not too widely regarded. It helps a lot, and I do believe it has contributed much to my well-being. There are many good ways to improve. As I am always telling clients who ask for energy work from me, the key always has to fit the lock. It is another tool in the toolbox, a good one.

 

[manna]

ive learnt that even if im able, i should still not do aerobic exercise. took me a while to realise that and in retrospect, walking has stopped many an improvemment. but in some ways getting outsde, the fresh air, feels good. i try to keep myself supple by doing polarity yoga. on the spot and easy'ish to do. important to keep your lymphatic system moving, within your capability, but by implosive, not explosive exercising.

 

[stridor]

Exercise increasing mitochondria in muscles is established physiology. This study also looks at exercise increasing mitochondria in the brain.
http://www.ncbi.nlm.nih.gov/pubmed/21817111

Are more mitochondria beneficial for ME? I doubt it. I think that the body shuts us down and decreases the number of mitochondria for a reason. It is a protective mechanism - esp for the heart.

But it might be good for what I deem to be recovery. I want "it all back" or as close to it as I can get. There is recovery or remission of ME and then there is recovery from the deconditioning that being inactive for years brings. After all what does recovery from ME mean if not recovery from the symptoms associated with it?

Some symptoms are directly related to ME and others are secondary to it. I also lost friends and interest in social activities and I consider this to be a goal of "recovery" as well.

I tried maybe 20 times to establish an exercise program - I even tried Freddd's incremental walking thing. Finally, I had some success - it ain't much but I'm prouder than a baby taking his first steps.

BDNF and CFS
http://www.ncbi.nlm.nih.gov/pubmed/18317925 BDNF is involved in those parts of the brain that are capable of new neuron production like the hippocampus = memory.

I was 80% recovered when I was finally able to establish an exercise routine again. I am careful. I don't have much in terms of adrenal function left. I can not always tell when I need to stress-dose hydrocortisone. I have not had PEM since I pushed mB12 into Freddd's arena of dosing. The last bad attack was when I was still only taking 1 mg s.c. daily. But like I said, I am careful.

I am not sure how much exercise I could tolerate before PEM when I started...or now for that matter. Fibro-type pain was a limiting factor.

I have (or had, I'm not sure) CCSVI. I had postural intolerance to the point where I was sent home from work "incapable of performing duties". I couldn't think and stand at the same time.
I had pronounced temperature dysregulation with activity and this was the harbinger of a fatigue event in 2 days. In 2011, attending a Dr appt was enough to trigger a 3 day PEM event. To me that is ME. According to my Dr, that was Bipolar Disorder.

I started with 5 minutes of light weights. I have increased to 20 min x 5 days weekly. I am tired after but can still function. After a couple of hours. I am completely recovered. brad

 

[ukxmrv]

I think that it is somewhat arbitrary to disallow exercise as being a part of recovery. I think that I was pretty clear that a degree of recovery is necessary before one can undertake exercise or it puts us at risk of "chewing up DNA" - or however I put it.
At some point however, careful and graduated exercise will encourage the cells to produce more mitochondria. As well, exercise is one of the few things known to increase BDNF = brain-derived neurotrophic factor which helps the brain generate more connectivity and communication between neurons. In these ways, exercise can contribute to the recovery of ME symptoms.

It's never worked for me. A couple of times when I have felt as if I am recovering a little and think that it is time to reintroduce a little exercise it hits me like a ton of bricks and puts me back years.

The problem for me is there is always a ceiling of how much exercise I can do and even when I thought I was getting to the point to try again at a slow, low level it damaged me so much. I'll not be doing that again.

Dr Ramsay said, of his ME patients that some had remissions and they were able to exercise with normal muscle strength. I've never had a remission and I've never had a slow recovery. I think that for many patients there is no recovery with exercise as it would jeopardise what they have achieved.

Until I know that I can tolerate exercise I would need some concrete proof. Theories just don't help here.

 

[Undisclosed]

The end result of many many illnesses is fatigue. Would we ask on a Cancer forum - has exercise cured your cancer? Would we ask on an AIDs forum, has exercise cured your AIDs? Why are we asking this question here?

If fatigue is the end result of an illness, if you don't remove the cause, there will be no cure -- the fatigue will continue. I just can't see how slowly increasing exercise would cure you of ME unless lack of exercise is the cause of ME which it isn't. What I want to know is more about what are the underlying causes of mitochondrial dysfunction in ME and how that can be addressed. Is our fatigue different from other illnesses -- I hate the word fatigue -- not very descriptive. How do we address all the other symptoms of ME - POTs, PEM, sleep issues, pain, cardiac dysfunction, gastrointestinal dysfuntion, cognitive issues -- where does exercise fit into this. It doesn't.

 

[searcher]

I am not a member of the group but it looks like the group is about how to exercise within each individual's limits. The word exercise has a lot of negative connotations but the discussion I see is about movements such as light stretching while lying in bed. I could be missing something, but this doesn't seem like GET where the powers-that-be have decided that gradually increasing activity will magically cure us.

 

[SOC]

I am not a member of the group but it looks like the group is about how to exercise within each individual's limits. The word exercise has a lot of negative connotations but the discussion I see is about movements such as light stretching while lying in bed. I could be missing something, but this doesn't seem like GET where the powers-that-be have decided that gradually increasing activity will magically cure us.

I think they principles the group is based on -- those advised by Drs Klimas and Sol, and maybe the Workwell people -- are reasonable. The problem is the way the person who started this group has presented it here at PR. Very ugly and very hostile to people who feel exercise is not advisable for all people with ME. Put me right off and I'm all in favor of being as active as possible without causing harm.

 

[searcher]

I think they principles the group is based on -- those advised by Drs Klimas and Sol, and maybe the Workwell people -- are reasonable. The problem is the way the person who started this group has presented it here at PR. Very ugly and very hostile to people who feel exercise is not advisable for all people with ME. Put me right off and I'm all in favor of being as active as possible without causing harm.

oh! Do you know if that person posting on this thread or is there a separate one I am missing? I just saw the link to the CAA page which honestly seemed reasonable to me; as you said it seemed based on Klimas/Workwell (working within AT and each person's own limits.) In some cases that literally may just be wiggling and toes fingers if that is all that can be done to not set off PEM. It's not close to a cure, more just a tool to help maintain some functionality.

 

[SOC]

oh! Do you know if that person posting on this thread or is there a separate one I am missing? I just saw the link to the CAA page which honestly seemed reasonable to me; as you said it seemed based on Klimas/Workwell (working within AT and each person's own limits.) In some cases that literally may just be wiggling and toes fingers if that is all that can be done to not set off PEM. It's not close to a cure, more just a tool to help maintain some functionality.

I agree the Klimas/Workwell ideas make sense. I was just put off by attitude.
http://phoenixrising.me/forums/inde...ent-program-me-cfs-safe-exercise-group.30025/

 

[stridor]

One of the things that may or may not be different is that I know what triggered my ME. I have over 3 years of chelation under my belt and am closing in finishing - maybe 6 months (?) I don't have a lot of stamina yet but I did some yard work both morning and afternoon today.

 

[SOC]

I was 80% recovered when I was finally able to establish an exercise routine again. I am careful.

Sounds about right to me. I'd expect to be able to exercise carefully when I'm 80% recovered. I wouldn't expect it to cure (or even improve) my ME, but I would expect to feel better for all the reasons a healthy person would benefit from some exercise.

I am not sure how much exercise I could tolerate before PEM when I started...or now for that matter. Fibro-type pain was a limiting factor.

Having fibro pain during exercise is not PEM. Nevertheless, I can see it would be a real problem with exercise.

A. Postexertional neuroimmune exhaustion (PENE pen’-e): Compulsory
This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are as follows:
1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
2. Postexertional symptom exacerbation:e.g.acute flu-like symptoms, pain and worsening of other symptoms.
3. Postexertional exhaustion may occur immediately after activity or be delayed by hours or days.
4. Recovery period is prolonged, usually taking 24 h or longer. A relapse can last days, weeks or longer.
5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.

I have (or had, I'm not sure) CCSVI. I had postural intolerance to the point where I was sent home from work "incapable of performing duties". I couldn't think and stand at the same time.
I had pronounced temperature dysregulation with activity and this was the harbinger of a fatigue event in 2 days. In 2011, attending a Dr appt was enough to trigger a 3 day PEM event. To me that is ME. According to my Dr, that was Bipolar Disorder.

Sheesh! Where do they get those silly ideas? Since when are temperature dysregulation and PEM symptoms of Bipolar Disorder?

I started with 5 minutes of light weights. I have increased to 20 min x 5 days weekly. I am tired after but can still function. After a couple of hours. I am completely recovered. brad

Sound like a smart plan. That's what I hope to try when I get to about 80% recovered.

 

[Keela Too]

I blogged recently about why I feel the word "exercise" should NOT be used in the context of ME

Just ME: Why NOT Exercise?
http://sallyjustme.blogspot.co.uk/2014/05/WhyNOTexercise.html

 

[lansbergen]

Dr Ramsay said, of his ME patients that some had remissions and they were able to exercise with normal muscle strength.

That is one of the strange things. I am improving but are not in remission yet. None the less on good days I can lift heavy stuff like 40 liter soil bags. Why do I lift them? Well I love gardening and when nobody is around to carry them for me and I do not want to wait till somebody is, I try to do it myself. Sometimes I have to pay big on other days I can do it without being punished.