I agree on being careful with cardio. I had a set back 6 months ago after I pushed my cardio way to fast. Where was this video 6 months ago? 😄 Thanks for another great video!
Oh I'm sorry to hear that, David! Uggh I should have got this video out sooner ☺️ It's interesting to hear how many people have had similar experiences as us. Definitely seems to be a theme. I'm glad you enjoyed the video and thanks for sharing this!
This is exactly what I need to try right now, I have been so bummed out not knowing how to recover and used to be pretty athletic. When I tell people I can't just push through an excersise or I can get sick again they think I am just not up for a challenge, but I used to love those challenges. Thanks for being brave and honest about your journey its inspiring.
Great examples! I can see just very lightly starting some of these as very valuable and worth the trying. Thank you for your generosity and sharing information~ and always having so much integrity~ we appreciate you!
I did all the exercises and boy did I find that my back was very tight! Thanks for giving me new exercise ideas! On the last one I do those outside on my steps where I can drop my heel below my toes & then push up.
Great video, thanks for those exercises! When you first started did you just do one exercise or did you do a couple and then just set a timer with those couple of exercises?
So glad you enjoyed it, Kathy! When I first started I just stuck with one or two exercises and set a timer. Then as the length of my workouts slowly increased I'd slowly add on more and more variety of exercises. It felt simper that way and it was important for me to keep it simple and manageable.
Did you monitor your heart rate when you were ill? I'm interested to know what the aerobic limit that most people with CFS have before getting PEM did while you were recovering. Like was it that one day you could suddenly do whatever with no PEM?
I never did monitor my heart rate David, but I'd be very interested in seeing that data if anyone else has. I know that for me - getting my heart rate up was really taxing on my body. It's part of why I stuck to gentle strength training so that my heart rate would remain lower. And then once I finally did add in cardio, despite being fairly strong physically and capable of doing up to hour long strength training workouts at that time, I still found cardio quite challenging and had to start really small and very slowly work my way up. The PEM for me disappeared very gradually over time taking a total of about two years on this exercise program (plus other things) before it was gone for good.
That's really helpful but for those of us who can't even do all of those exercises and reps in one go would you say it's better to go for the range of exercises over reps or concentrate on doing 10 reps of one exercise comfortably before adding another,?
Glad you found this helpful, Wileyfox! I found it simplest and the most manageable/doable to concentrate on just one or two exercises to start with. Over time as the length of my workouts increased I slowly added in more variety.
Treatment of CFS There is a tendency for both patients and doctors to concentrate on treating the symptoms of CFS rather than trying to cure the illness itself. Many patients take various herbs and supplements in order to cure their symptoms. In most cases these supplements have been shown to have no effect whatsoever, and at best they only give a mild improvement. CFS researchers sometimes give antiviral treatments to patients who have persistent herpes infections such as EBV. These treatments, while they may help in combating any viral infections, has not been shown to actually cure CFS itself. Quite a few clinical trials have been published by Straus, Lerner, Montoya and others, and all of them have shown that antiviral treatments have no significant effect on the symptoms of CFS. When hormone tests are performed on CFS patients by some doctors, there is a tendency to treat the illness by replacing deficient hormones, such as testosterone, cortisol, growth hormone or the thyroid hormones. Again, this only cures some of the symptoms and does not provide a cure for CFS. Many CFS patients use sleeping pills to cure insomnia, but in many cases this simply leads to a dependence on the medication and only offers a partial or temporary cure for the actual insomnia. This is also the case for treatments for other symptoms of CFS, such as depression, anxiety and tachycardia. In some cases the patient ends up taking a large number of different drugs and supplements, and may end up feeling just as bad or worse than if they were taking nothing! Studies have shown that providing cortisol replacement therapy in CFS patients gives a small improvement in symptoms, but does not cure the illness and is generally not recommended. The problem with cortisol replacement is that it tends to suppress the HPA axis responsiveness of the patient, resulting in adrenal insufficiency after the treatment has ceased. In addition, as it only replaces one hormone it is not surprising that it does not cure all of the symptoms. The existing CFS treatments really just seem to be skirting about the main issue of trying to restore the normal HPA axis activation / brain function. What is likely to be more effective is to develop a treatment which combines certain aspects of existing treatments such as CBT and graded exercise, and which also attempts to make patients aware of the causes of the illness and the steps that they can take in order to cure themselves. CBT, although useful, is based on the notion that patients' negative beliefs about their illness serve to perpetuate the illness, through negative feedback. While this may be a factor with some patients, it doesn't fully explain the etiology of the illness, and as discussed earlier research shows that adding cognitive elements to a treatment does not make it more effective. While CBT does help somewhat, it is possible that it is due to something along the lines of the placebo effect, and not for the reasons given by the practitioners. Many CFS patients will not have anything to do with CBT because it implies that they are deliberately prolonging their illness. The treatments that tend to work best for curing CFS can be divided into three categories: psychological, changes in lifestyle and the placebo effect. All three types of treatment ultimately work in the same way, with the psychology of the patient determining the effectiveness of any particular treatment. In many cases it is probably the act of doing the treatment that results in recovery, rather than any actual benefit from the treatment itself. Purely psychological treatments, such as CBT and counselling, tend not be very effective, as they tend to focus on areas such as emotional problems which are not necessarily a significant factor in many cases. In the lifestyle category, many patients find that getting a new job or changing their career to something that they really enjoy results in curing their CFS symptoms. In terms of the placebo effect, many dubious alternative therapies that rely on the placebo effect for their effectiveness have resulted in people completely recovering from CFS. Treatments that have worked include anti-candida diets, kinesiology, food intolerance diets, as well as many others. It should be pointed out that these were not patients who had mild symptoms; many of these people were bed-ridden and had highly debilitating physical and mental symptoms, all of which were completely cured by apparently trivial treatments. Perhaps the most beneficial way of treating CFS would be a combination of psychological/lifestyle and pharmacological treatments. Initially, the patient could be treated with drugs to help cure symptoms such as adrenal insufficiency, depression, anxiety and insomnia. This would provide a temporary cure for some of the symptoms, which would then allow the patient to work on the long-term recovery process. Factors that are likely to be important in this healing process might include: Reducing any excessive negative emotional or work-related stress. Getting rid of any negative mental attitudes to the illness, and concentrating on improving rather than thinking that the illness is going to be permanent. Increasing short- and long-term goals and motivating tasks and having sufficient physical and mental stimulation, while at the same time not doing so much that they suffer from a "crash". People who have recovered from CFS say that an important factor in improving health is to learn how to "pace" themselves, and to only do as much as their body can handle. Making significant lifestyle changes in order to align their goals and beliefs with how they live their life. The concept of flow developed by Mihaly Csikszentmihalyi closely corresponds with the factors that result in recovery from CFS. Flow is the mental state of being fully immersed and enjoying an activity, with a feeling of being energized. It is similar to being "in the zone", and is similar to Zen Buddhism. Studies of workers suffering from burnout have shown that the absorption and enjoyment aspects of flow are associated with energy after work, and that a harmonious passion for work results in low levels of burnout. What is important is to make changes in mental attitude and/or lifestyle that break the vicious circle of HPA axis suppression leading to illness, which then leads to further suppression of the HPA axis. Patient support groups are not always useful for CFS patients. In many cases these groups foster the myth that recovery is not possible, which may in itself be detrimental to the chances of recovery. In summary, the only real way to treat CFS is to get to the heart of the illness and treat the underlying factors that cause the various mental, physical, endocrine and immune system symptoms associated with the illness. Concentrating on just one single group of symptoms will only bring partial relief, and will simply serve to prolong the illness. Recovery is not instant, and may take many months due to long-term changes that have occurred in the HPA axis, the brain, and associated areas which may take a long time to reverse. However, recovery is possible, even for the most severely disabled patients.
if i had the eloquence XD this has been my experience too. Ive tried my best to gather as much info from other 'sub groups' along the way n drew the same conclusions
It really irritates me (and a lot of other ME/CFS sufferers) when anyone speaks about this as if they know the causes and solutions, when that's patently not the case, since there is no consensus (scientific or otherwise) about these things. This is a radically under-researched and poorly understand condition. Sounding certain and coherent may make some folks think you know what you're talking about, but for anyone deeply knowledgeable about the state of knowledge on this illness, sounding certain and coherent just shows you're either a charlatan or yet another arrogant fellow who gets off on spouting off at sick people.
I have ME and gentle exercise has been helping me a lot with my recovery. I'm sure you believe what you shared here, but please be careful about spreading this kind of inaccurate information. There are countless examples of people out there with ME who are using exercise to recover!
I agree on being careful with cardio. I had a set back 6 months ago after I pushed my cardio way to fast. Where was this video 6 months ago? 😄 Thanks for another great video!
Oh I'm sorry to hear that, David! Uggh I should have got this video out sooner ☺️ It's interesting to hear how many people have had similar experiences as us. Definitely seems to be a theme. I'm glad you enjoyed the video and thanks for sharing this!
This is exactly what I need to try right now, I have been so bummed out not knowing how to recover and used to be pretty athletic. When I tell people I can't just push through an excersise or I can get sick again they think I am just not up for a challenge, but I used to love those challenges. Thanks for being brave and honest about your journey its inspiring.
Thank you for this! Have had no idea where to even begin.
Great examples! I can see just very lightly starting some of these as very valuable and worth the trying.
Thank you for your generosity and sharing information~ and always having so much integrity~ we appreciate you!
Aw that's so nice of you to say Jacki! Thank you 😀 I'm glad you enjoyed the video 💛
Really, helpful, thank you! 💜
So glad you found it helpful, Linda! ✨
Love the exercise videos! Super helpful and would love to see what kind of things worked for you at level 3 and on!
I'm so glad you are enjoying them, Sam! And I'll add a level 3 to my video "to do" list, thanks for the suggestion 😁
I did all the exercises and boy did I find that my back was very tight!
Thanks for giving me new exercise ideas!
On the last one I do those outside on my steps where I can drop my heel below my toes & then push up.
That is such a great idea to do them on the step! Good for you for giving it a go, I know it's not easy. Cheering you on!!
Love ❤️ seeing you happy 😃
Aw aren't you sweet, Sylvia! ❤️😘
So helpful!
Glad you enjoyed it, Annie! 🙌
You radiate all around beauty 💜
Great video, thanks for those exercises! When you first started did you just do one exercise or did you do a couple and then just set a timer with those couple of exercises?
So glad you enjoyed it, Kathy! When I first started I just stuck with one or two exercises and set a timer. Then as the length of my workouts slowly increased I'd slowly add on more and more variety of exercises. It felt simper that way and it was important for me to keep it simple and manageable.
Thanks, that really helps!
Ty, please make more videos like this 💕
You got it, Sylvia! As always 💓
Did you monitor your heart rate when you were ill? I'm interested to know what the aerobic limit that most people with CFS have before getting PEM did while you were recovering. Like was it that one day you could suddenly do whatever with no PEM?
I never did monitor my heart rate David, but I'd be very interested in seeing that data if anyone else has. I know that for me - getting my heart rate up was really taxing on my body. It's part of why I stuck to gentle strength training so that my heart rate would remain lower. And then once I finally did add in cardio, despite being fairly strong physically and capable of doing up to hour long strength training workouts at that time, I still found cardio quite challenging and had to start really small and very slowly work my way up. The PEM for me disappeared very gradually over time taking a total of about two years on this exercise program (plus other things) before it was gone for good.
That's really helpful but for those of us who can't even do all of those exercises and reps in one go would you say it's better to go for the range of exercises over reps or concentrate on doing 10 reps of one exercise comfortably before adding another,?
Glad you found this helpful, Wileyfox! I found it simplest and the most manageable/doable to concentrate on just one or two exercises to start with. Over time as the length of my workouts increased I slowly added in more variety.
Treatment of CFS
There is a tendency for both patients and doctors to concentrate on treating the symptoms of CFS rather than trying to cure the illness itself. Many patients take various herbs and supplements in order to cure their symptoms. In most cases these supplements have been shown to have no effect whatsoever, and at best they only give a mild improvement.
CFS researchers sometimes give antiviral treatments to patients who have persistent herpes infections such as EBV. These treatments, while they may help in combating any viral infections, has not been shown to actually cure CFS itself. Quite a few clinical trials have been published by Straus, Lerner, Montoya and others, and all of them have shown that antiviral treatments have no significant effect on the symptoms of CFS.
When hormone tests are performed on CFS patients by some doctors, there is a tendency to treat the illness by replacing deficient hormones, such as testosterone, cortisol, growth hormone or the thyroid hormones. Again, this only cures some of the symptoms and does not provide a cure for CFS.
Many CFS patients use sleeping pills to cure insomnia, but in many cases this simply leads to a dependence on the medication and only offers a partial or temporary cure for the actual insomnia. This is also the case for treatments for other symptoms of CFS, such as depression, anxiety and tachycardia. In some cases the patient ends up taking a large number of different drugs and supplements, and may end up feeling just as bad or worse than if they were taking nothing!
Studies have shown that providing cortisol replacement therapy in CFS patients gives a small improvement in symptoms, but does not cure the illness and is generally not recommended. The problem with cortisol replacement is that it tends to suppress the HPA axis responsiveness of the patient, resulting in adrenal insufficiency after the treatment has ceased. In addition, as it only replaces one hormone it is not surprising that it does not cure all of the symptoms.
The existing CFS treatments really just seem to be skirting about the main issue of trying to restore the normal HPA axis activation / brain function. What is likely to be more effective is to develop a treatment which combines certain aspects of existing treatments such as CBT and graded exercise, and which also attempts to make patients aware of the causes of the illness and the steps that they can take in order to cure themselves.
CBT, although useful, is based on the notion that patients' negative beliefs about their illness serve to perpetuate the illness, through negative feedback. While this may be a factor with some patients, it doesn't fully explain the etiology of the illness, and as discussed earlier research shows that adding cognitive elements to a treatment does not make it more effective. While CBT does help somewhat, it is possible that it is due to something along the lines of the placebo effect, and not for the reasons given by the practitioners. Many CFS patients will not have anything to do with CBT because it implies that they are deliberately prolonging their illness.
The treatments that tend to work best for curing CFS can be divided into three categories: psychological, changes in lifestyle and the placebo effect. All three types of treatment ultimately work in the same way, with the psychology of the patient determining the effectiveness of any particular treatment. In many cases it is probably the act of doing the treatment that results in recovery, rather than any actual benefit from the treatment itself. Purely psychological treatments, such as CBT and counselling, tend not be very effective, as they tend to focus on areas such as emotional problems which are not necessarily a significant factor in many cases. In the lifestyle category, many patients find that getting a new job or changing their career to something that they really enjoy results in curing their CFS symptoms. In terms of the placebo effect, many dubious alternative therapies that rely on the placebo effect for their effectiveness have resulted in people completely recovering from CFS. Treatments that have worked include anti-candida diets, kinesiology, food intolerance diets, as well as many others. It should be pointed out that these were not patients who had mild symptoms; many of these people were bed-ridden and had highly debilitating physical and mental symptoms, all of which were completely cured by apparently trivial treatments.
Perhaps the most beneficial way of treating CFS would be a combination of psychological/lifestyle and pharmacological treatments. Initially, the patient could be treated with drugs to help cure symptoms such as adrenal insufficiency, depression, anxiety and insomnia. This would provide a temporary cure for some of the symptoms, which would then allow the patient to work on the long-term recovery process. Factors that are likely to be important in this healing process might include:
Reducing any excessive negative emotional or work-related stress.
Getting rid of any negative mental attitudes to the illness, and concentrating on improving rather than thinking that the illness is going to be permanent.
Increasing short- and long-term goals and motivating tasks and having sufficient physical and mental stimulation, while at the same time not doing so much that they suffer from a "crash". People who have recovered from CFS say that an important factor in improving health is to learn how to "pace" themselves, and to only do as much as their body can handle.
Making significant lifestyle changes in order to align their goals and beliefs with how they live their life.
The concept of flow developed by Mihaly Csikszentmihalyi closely corresponds with the factors that result in recovery from CFS. Flow is the mental state of being fully immersed and enjoying an activity, with a feeling of being energized. It is similar to being "in the zone", and is similar to Zen Buddhism. Studies of workers suffering from burnout have shown that the absorption and enjoyment aspects of flow are associated with energy after work, and that a harmonious passion for work results in low levels of burnout.
What is important is to make changes in mental attitude and/or lifestyle that break the vicious circle of HPA axis suppression leading to illness, which then leads to further suppression of the HPA axis.
Patient support groups are not always useful for CFS patients. In many cases these groups foster the myth that recovery is not possible, which may in itself be detrimental to the chances of recovery.
In summary, the only real way to treat CFS is to get to the heart of the illness and treat the underlying factors that cause the various mental, physical, endocrine and immune system symptoms associated with the illness. Concentrating on just one single group of symptoms will only bring partial relief, and will simply serve to prolong the illness. Recovery is not instant, and may take many months due to long-term changes that have occurred in the HPA axis, the brain, and associated areas which may take a long time to reverse. However, recovery is possible, even for the most severely disabled patients.
if i had the eloquence XD this has been my experience too. Ive tried my best to gather as much info from other 'sub groups' along the way n drew the same conclusions
It really irritates me (and a lot of other ME/CFS sufferers) when anyone speaks about this as if they know the causes and solutions, when that's patently not the case, since there is no consensus (scientific or otherwise) about these things. This is a radically under-researched and poorly understand condition. Sounding certain and coherent may make some folks think you know what you're talking about, but for anyone deeply knowledgeable about the state of knowledge on this illness, sounding certain and coherent just shows you're either a charlatan or yet another arrogant fellow who gets off on spouting off at sick people.
Did your stretching cause PEM?
Great question jellybean. Earlier on in my illness (when it was more severe) it did, but later on I could manage gentle stretching without PEM.
If you have CFS you can exercice but not if you have ME! It is proven and unfortunately you might make patients worse.
I have ME and gentle exercise has been helping me a lot with my recovery. I'm sure you believe what you shared here, but please be careful about spreading this kind of inaccurate information. There are countless examples of people out there with ME who are using exercise to recover!