Discussion in 'News and Research' started by IanH, Sep 5, 2013.
http://www.plosone.org/article/info...osone/PLoSONE (PLOS ONE Alerts: New Articles)
I'm glad to read that exercise can improve FM symptoms.
The opposite is true for CFS. See http://phoenixrising.me/archives/17902
which proves the existence of "post-exertional malaise", which is unseen in any other illness. This is what crashing is. I think this test (the two-day exercise stress test) demonstrates a verifiable biomarker for CFS.
The need for exercise is true for both FM and ME. Exercise can and does help to reduce the symptoms of ME but it must be done within the appropriate activity envelope. This is the main assertion of people like Prof. Jason. and Prof Klimas. The appropriate envelope of activity must be heeded for both conditions. People with FM also suffer post exertional fatigue with an immune profile if they step outside their personal "envelope" (overdo it). However the activity envelope for people diagnosed with FM seem to have a wider envelope than people diagnosed with ME.
Also fatigue with immune profile is not just activated by over exertion, it is also activated by excessive exposure to toxins and by excessive emotional stress. Also the 2-day exercise stress test triggers fatigue in many people with FM. It can also do this for people with MS although the immune profile change is slightly different. Also people with MS have a wider envelope too.
The exercise stress test really only measures post exertional fatigue. It is the underlying immune profile which is the signature for ME plus the self report of malaise which at this stage cannot be measured any other way.
Ian - I've suffered from "post-exertional exhaustion" since 1998. Exercise does not make it better. My "activity envelope" has remained constant - 3-1/2 hours of light activity a day. If I exceed this, I crash. If you read about the PCET testing, you'll see that the results for people with CFS are unlike any other illness. When you say it "only" measures post-exertional fatigue, you seem to be minimizing that this is the first objective indication that it really exists. The degree of debility post-exertion suffered by people with CFS is extreme - is unmatched by any other illness, not FM or MS, and it does not improve with exercise.
I am not trying to minimize the test's importance. It is a great advance in the diagnostics for a clinical setting. However it is not the first "objective" test of ME it is the first practical low cost clinical test.
I do agree that the degree of debility from PEM in ME far exceeds that of other illnesses. (I have experienced this disabling PEM many times myself over the nearly 20 years).
The test does not negate the importance of exercise. It does not imply that people with ME should not exercise.
EVERYONE should exercise to the level of their ability. If a person with ME does not exercise than the consequences are dire in the longer term. Since there are no disease modifying drugs and likely to be no such drugs in the medium term future a person who does not exercise will age faster than a "normal" person.
More rapid brain cell loss;
More neuropathic pain due to poor perfusion of nerves and more shunting of blood from the periphery;
Slower ROS clearance due to poorer cell membrane ion transfer;
Poorer delivery of nutrients to muscle tissue;
Deteriorating cardiac function;
Slower lactate clearance;
As a consequence of the above possibly a greater susceptibility to cancers;
Unless the person limits food intake to maintain a body weight of "ideal" then weight gain is likely, We see this in most people with ME. Such overweight (not necessarily obesity) in ME is a high risk factor for: diabetes, thyroid dysfunction, kidney disease.
By exercise I do not mean aerobic exercise. At very least, yogic type muscle stretching should be carried out daily to ensure that those muscles not generally used in a sedentary day are exercised. Equally exercises that improve blood flow are a necessity. Where a person sits a lot, eg at a computer they must exercise every 20 minutes to avoid compression in the low back and poor venous return in the legs, etc.
Obviously in the initial stages of ME where a person is completely disabled exercise may not be possible but at some point it must be started.
Mary-when you say it does not improve with exercise, I must say we have many patients who have found that exercise does help reduce their symptoms. However these people are on a complete program including some on SSRI, SNRI, mitochondrial support, balneotherapy. Some have even got to the point (after many years) where the only thing they do differently is exercise. There are huge individual variabilities in ME so we can expect different outcomes from exercise.
Hi Ian - I've been on mitochondrial support for many years. I've gotten to where I feel almost normal, in between crashing, whereas I used to feel like crap most of the time. But I still crash, My energy envelope has not increased in all these years. I agree that exercise is crucial for health and that is one of the cruelest aspects of CFS - how it makes it basically impossible to exercise. I used to be very active physically and it feels like being in a prison, not being able to move. I go in the swimming pool where I live, and have to content myself with gentle paddling about for maybe ten minutes or so, if I don't want to crash the next day. When all I want to do is swim, vigorously - meanwhile all these healthy people don't know what they have and just float around - wasting what they have.
I'll put it this way - the activities I have to do for daily life - grocery shopping, laundry, cat litter box, light house cleaning, cooking, dishes, go to the library, doctor appt., etc. - use up all my energy. If I have any "extra" energy, I might use it for vacuuming, which I'm able to get to about once every 2 months or so. I took a yoga class once and promptly crashed the next day. I do have a mini-trampoline that I gently bounce on, which gets blood and lymph flowing, and this takes next to zero effort on my part.
I don't think we have enough information to debate this issue. I was pointing out that exercise helps FM patients, but as generally thought of, it does not help CFS patients. That's a huge difference. So we could talk about what exactly is exercise, gentle stretching etc. But also, I think that PEM is a biomarker for CFS and that people who benefit from exercise as it is traditionally thought of, generally do not have CFS.
exercise . . . . it does not help CFS patients
Our experience is very different. I do accept that exercising can be a very big hurdle for people with ME and it may not be wise to even attempt exercise of any kind initially. As people improved, (on SSRI's, SNRI's etc., or on supplements or other therapy) they started exercise in order to improve further.
Did you not follow that path? It sounds like you did, with your swimming, general household activities, trampoline.
It sounds like you moved some distance. I am sorry to hear you have not been able to move past that point. I too have been unable to move past the point I am at. I have reached a "coping level" in which I MUST still regulate myself - this will never stop being important. We know there is no cure and I also doubt when people tell me they have totally recovered. I know several people who have "recovered" to a better functional level but if they stopped doing the things they now do to cope I know they would go backwards. (me, my wife and daughter included).
The issue isn't exercise, it is exertion which can be isometric or isotonic. A person engaging in aerobic exercise must be extremely careful to monitor their activity with only very short bursts of activity (no more than 5 mins generally, with a resolution of at least 10 mins. I can tolerate about 10 mins of jogging on the spot, whereas within the first 5 years of illness I could tolerate 1 min or so). Similarly lifting a weight or pushing a piece of furniture can create tremendous exertion which must be monitored and regulated. I helped my (other) daughter move a piece of furniture from one room to another and ended up in hospital with extreme exhaustion and inability to breathe. Such exertion can also occur in Yoga, particularly over time - yoga is deceptive.
Hi Ian - first, I haven't accepted yet that there is no cure for CFS. From what I read, it seems to be most likely caused by a virus or toxins. However, any progress I've made has not been due to exercise or exertion. It's the other way around. I've made improvement in several areas, which has enabled me to keep my house a little bit cleaner than before and so on.
The main things which have helped to almost feel normal again (in between crashing and getting sick) are the following. Unfortunately, although I feel better overall, I have not increased my "energy envelope" - still limited to 3-1/2 hours of light activity a day.
Adrenals: these were very very weak at one point and adrenal glandulars and pantothenic acid were crucial in strengthening them, plus minimizing stress, meditating and so on. My chiro who does muscle testing was a godsend here. I think I would have ended up bedridden without him.
Digestion: I had several problems here. One was a liver overloaded with toxins which seemed to originate in a job I had when I was 19 and had heavy exposure to chemical solvents. When I was 50 one glass of wine would make sick for an entire day, two glasses and I'd be sick for three days. With the help of my chiro who does muscle testing, I did a liver detox for a month and thereafter took milk thistle and also HCL with each meal and my digestion has improved 100%. Also at one point my gallbladder was inflamed, digestion screwed up again, and a supplement from the chiro (AF betafood) and also the HCL took care of that.
Folate deficfiency: I found out a couple of years that I had a folate deficiency. My MCV on the CBC was high-normal (98 or 99 out of 100 or so). Doctors saw this for years, said nothing till one finally mentioned it might be a problem. I had to do my own research, found this indicated a B12 OR folate deficiency. I'd been taking B12 for years. When I started taking folate in the form of metafolin (not folic acid which is synthetic and many people have trouble converting to a useable form) my energy markedly increased, felt better than I had in years, though was still crashing. Which led to
Potassium deficiency: The sudden influx of folate caused my potassium levels to tank as my need for potassium greatly increased as cells healed and multiplied. And I found the symptoms of low potassium (heavy fatigue and lethargy) very familiar - I had experienced this before only never knew what it was. I started taking a potassium supplmenet and sure enough, those symptoms disappeared. I continue to take 400 mg. of potassium daily and those symptoms have not recurred. Also, interestingly enough, I read that being sedentary as we are forced to be will lower potassium levels so we are more prone to potassium deficiency. My blood tests were okay, a little low-normal but I know that at times they would just tank, but no one knew what this new awful fatigue was. No point going to the doctor who would just prescribe an SSRI or something without finding out what was going on.
P-5-P - B6 in the form of pyridoxal-5-phosphate increased my energy a bit so take 25 mg. a day.
I can't tolerate SSRI or SNRI's - I think 5-htp and l-tryptophan are much safe ways to increase serotonin.
Detoxing: This used to be a huge issue for me. So many things would cause a detox reaction for me. Years ago I was feeling spacey and bit woozy, did not know what was going on, saw my chiro and he said I was toxic. This was probably before the I did the liver detox. A toxic liver will wipe you out. But even after that I had problems with detoxing. Somehow I have moved past the worst of this. I'm not sure how. I did take acetyl-glutathione (pricey!) for 3 or 4 months, and then started taking Chem Defense, much cheaper, which has sublingual glutathione. Anyways, I'm tolerating the mercury detox I mentioned above much better than a year ago. I've done a separate post on this if anyone wants more info.
Richvank said he knew of a woman who had done his methylation protocol but still had not recovered, but after she did a mercury detox, she overcome PEM. I read about another woman on the Phoenix Rising board who had the same experience so that's why I'm trying the mercury detox.
I think these are the main things which have helped me. It's too soon to tell if the mercury detox will help or not (following Andy Cutler's protocol) but am going to give it a fair try.
And I do take CoQ10, methylcobalamin, d-ribose, magnesium glycinate and about 30 other supplements, but the above things are what helped me the most. If I hadn't got my digestion sorted out, nothing would have helped so that had to be done first, and if my adrenals never got any support, I don't think anything else would have helped either.
Ian - a few other things I forgot about that have also helped me - I take l-carnitine (right now in the form of carnitine fumarate).
Immune support - I stumbled across Moducare 3 or 4 months ago and it has helped me so much with chronic sinus infections, an inability to shake the smallest bit of sickness. It's a combination of plant sterols and sterolins - I can't explain the chemistry but it seems to be the combination of these two things which does the trick. I have tried countless herbs and other supplements trying to boost my immune system and this is the first that has made a noticeable difference. You can google for more info.
So all of the above from my earlier post and the Moducare have given me a little hope that it might be possible to recover -
Yes, I do think this is very significant:
"If I hadn't got my digestion sorted out, nothing would have helped so that had to be done first"
In this regards, I forgot to mention, that we use the following:
Bovine colostrum 1gm twice daily
Melatonin 1mg twice daily &/or 5HTP 200mg twice daily
Vitamin D3 10,000Iu daily for 3 weeks followed by 5000IU
Potassium citrate 200mg twice daily
This is in addition to the mitochondrial support.
Hi Ian - that all sounds good. What sort of place do you operate? Is it a clinic of some sort?
Also, do you check out the adrenals? These were crucial for me.
hello everyone Exercise does not make it better. My "activity envelope" has remained constant - 3-1/2 hours of light activity a day. If I exceed this, I crash. If you read about the PCET testing, you'll see that the results for people with CFS are unlike any other illness.
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