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Adrienne Dellwo

Chronic Fatigue Syndrome Basics: Post-Exertional Malaise

By July 19, 2011

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Chronic Fatigue Syndrome Basics Series #2

Being physically active is supposed to give you an energy boost. Sleep experts caution against exercising within a couple of hours of bedtime because it'll keep you awake. So when someone has no energy, like in chronic fatigue syndrome (ME/CFS), shouldn't they try exercising more?

It seems logical that they should, but exercise can make people with ME/CFS worse instead of better.

This condition involves something called post-exertional malaise. It's a major upswing in symptom severity after exertion. For some people, that might be a day of work at a desk. For others, it might be a shower or walking to the mail box.

Multiple research teams have been working to figure out exactly what's behind this system. So far, they've found differences in the blood and in genetic expression after exercise compared to healthy people. Some researchers believe post-exertional malaise hold the key to the much-sought-after diagnostic test for ME/CFS.

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Comments
July 19, 2011 at 9:55 am
(1) Rachael says:

Think of why most people exercise in the first place; it’s to improve their health; to boost their immune system; to make feel good endorphins in the brain. If you have an autoimmune illness, like I believe CFS is, the last thing you want to do is stimulate your immune system even more. Histamine can be released by mast cells during a wide variety of activities, including exercise. Exercise is great for the average person, or the person who is depressed. These people have an abundant supply of endorphin making dopamine, but if you are lacking in this neurotransmitter exercise will only cause a further depletion and worsen your CFS symptoms.

Diminished dopamine levels in the brain also cause prolactin levels to rise. Prolactin enhances the progression of the immune process in autoimmune diseases because of its involvement in many immunological activations (up-regulating the immune system).

July 19, 2011 at 10:05 am
(2) Rachael says:

Here’s an interesting article re: activation of the immune system and inflammation:

“Most of us associate depression with being run down and having poor immunity to infections. The startling side effects of the immune-boosting drugs turn that notion on its head. They suggest that some people who are depressed may actually be suffering from an over-heated immune system, and that damping down inflammation could offer a brand new way to treat routine clinical depression–while making billions for the pharmaceuticals industry into the bargain. It’s a theory that recasts depression–one of the great plagues of our time–as a chronic inflammatory disease like rheumatoid arthritis.”

http://www.biopsychiatry.com/immunesystem/index.html

July 19, 2011 at 10:48 am
(3) Mark says:

Rachael I disagree with what you said.
I have CFS and exercise is one of the few things that make me feel great and helped me recover. I’m at 80% of healed after 4 years of back and forth.
Little exercise, 5 days a week made me feel great.
I started with simple 10 min walks and I can now run for 45 min and do strenghtenning body weight exercises. I can also achieve much more in my daily life. Like grocery shopping meeting with friends and working…
They key with exercise is to find a level low enough to make you feel good without pushing. For some people it may mean starting with a 30sec walk or raising an arm while in bed.

July 19, 2011 at 10:59 am
(4) Rachael says:

Mark: Then I don’t believe you have CFS. My CFS and many others with the condition was triggered after strenuous exercise.

” In sharp contrast to the CDC’s 1994 definition, this new clinical case definition makes it “COMPULSURY” that in order to be diagnosed with ME/CFS, a patient must become symptomatically ill after exercise and must also have neurological, neurocognitive, neuroendocrine, dysautonomic, circulatory, and immune manifestations. In short, symptoms other than fatigue must be present for a patient to meet the criteria.”

http://www.cfids-cab.org/MESA/ccpc.html

July 20, 2011 at 10:05 am
(5) Mark says:

I did not say I did not have PEM.
I said I built up to this level over a year. It’s possible, I did it.
I still can trigger PEM if I go beyond my new tolerance level.
This tolerance level used to be very low, like running 5 min….
Exercise has to be gauged correctly NOT to trigger PEM.
If you try an exercise plan and it triggers PEM then you are doing too much. That’s easy.
I dont define exercise in the traditional way (healthy people way). Exercise could be any activity that makes your body move (or some part of your body).

July 19, 2011 at 5:19 pm
(6) Judy says:

Don’t be too quick to judge Rachael. I have had CFS for 17 years and gone from sleeping 18 hours a day to now working full time. I do believe mindset has something to do with it but in saying that, I never thought I would be able to contemplate exercising or working again until 4 years ago. I was proud of myself when I did 5 mins on the cycle machine at the gym and went from there. (It took longer to drive to there). I’ve run the whole gamut of swollen glands, mind fog, fatigue etc and still relapse to the point where I spend the whole weekend in bed sometimes. My immune system still causes problems because I get ill a lot and I still also have a number of adult onset allergies triggered by CFS – the most severe being an anaphylactic reaction to seafood. I’m sure that some days its just sheer bloody mindedness on my part that I push myself so hard. Everyone is different and different things work for different people.

July 19, 2011 at 5:48 pm
(7) Rachael says:

Judy: I’m glad exercise worked for you and cured what ailed you, but for most sufferers of CFS exercise is not only counterproductive, it’s down-right dangerous. Here’s some interesting articles.

CBT and GET cause immediate risk – Canadian Guidelines are Lifesaving
http://niceguidelines.blogspot.com/2011/01/why-exercise-is-bad-for-mecfs.html

And if you want to put faith in Simon Wessely and his exercise theory for CFS recovery, read some of his comments about CFS sufferers:

“Most CFS patients fulfill diagnostic criteria for psychiatric disorder. Other symptoms include muscle pain and many somatic symptoms, especially cardiac, gastrointestinal and neurological. …. Do any of these symptoms possess diagnostic significance? The answer is basically negative… The description given by a leading gastro-enterologist at the Mayo clinic remains accurate. ‘the average doctor will see they are neurotic and he will often be disgusted with them.’ ”

“Validation is needed from the doctor. Once that is granted, the patient may assume the privileges of the sick role (sympathy, time off work, benefits, etc)”

http://www.mecfsforums.com/index.php?topic=770.0

July 19, 2011 at 1:11 pm
(8) Justin says:

Psychoneuroimmunology. A newish science which will hopefully unlock the secret to CFS/ME.

July 19, 2011 at 2:05 pm
(9) Rachael says:

When they begin to understand, that we are not all immune-suppressed carbon copies of one another, they
will be well on their way to finding a cure for CFS. Believe it or not; we are not all in need of a boost!

Psychiatrists have been very reluctant to accept the
idea that depression (anxiety), which they know so well,
may be caused by allergies to common environmental
molecules such as foods, airborne particles and
chemicals. Even exercise can trigger asthma, rhinitis, urticaria and sometimes even anaphylaxis, in some vulnerable individuals.

When patients were depressed and anxious, and at the same time suffered from diseases accepted as allergic, psychosomatic explanations (eg sickness behavior) were given (they just think they are sick; attention seekers; neurotic). This usually meant that a psychological explanation for the presence of the allergic reactions was invoked (in other words blame the patient). It couldn’t possibly be, that their complaints were real; that they actually were sick and it just wasn’t a figment of their imagination.

The tricyclic antidepressants (eg amitriptyline) are third generation antihistamines. The discovery of the antihistamines was followed by their use as
tranquilizers (they suppress histamine and thus the
immune system). It’s peculiar that “low dose
amitriptyline” helps many CFS sufferers because of it’s antihistamine effect.

http://www.orthomed.org/resources/papers/hofdepr.htm

July 19, 2011 at 5:28 pm
(10) Jenn says:

Rachael, you are right on the nose. My tests at a leading CFS clinic show severe inflammation, and there is a great deal now being written about depression being due to inflammation. I watched a 9-year-old girl at my church go from being perecftly healthy to suddenly developing celiac disease. One of her symptoms was that she became severely depressed. And the role of triggers in the environment… thanks for all your info.

July 19, 2011 at 10:22 pm
(11) alana says:

there are different things that make us feel fatigued – we just get bunched under the same term cfs, because of similar symptoms but completely different conditions. soma person who benefits from physical exertion has a completely different fatigue than one who gets clagged out when they walk to the mailbox. they have something that exertion helps, and it’s possibly something that vitamins and fitness will help.
if it exercise causes pain and actually sets you backwards, i
can only suggest: dont do it! if it works for you then it’s probably something else with similar symptoms

July 20, 2011 at 9:27 am
(12) Rachael says:

CFS/ME and Exercise

Recent research shows that CFS/ME elevates expression of inflammation genes, so that even minimal exercise can seem like a marathon.

http://www.suite101.com/content/cfsme-and-exercise-a85883

July 20, 2011 at 10:13 am
(13) Mark says:

Lol you give much faith into research :)
Research that has no clue what causes CFS.
Rachael you missunderstand the way we use “exercise”.
Exercise for CFS people is different.
You rely on studies and doctors who dont get anything of this disease. As I said before, exercise is relative.
It can be just raising your arm…..
It seems you have troubes to understand.

July 20, 2011 at 11:36 am
(14) Rachael says:

Mark: I misunderstand nothing about this illness. As a 25 year sufferer and having done research on my own behalf for the last twenty, I have read and deciphered, just about everything possible regarding CFS. It’s going to come out very soon, that just like autism, asthma, allergies and autoimmune illnesses; genes load the gun and the environment pulls the trigger (eg vaccines, aspartame, viruses etc). BTW, my own research has led to me to actually having a life again and exercise most definitely had nothing to do with my partial recovery. In saying this, I’m still glad that exercise worked for you.

July 20, 2011 at 1:44 pm
(15) Mark says:

Well despite 20 years of research you are still wrong :)
Too bad.
You are the one telling me I dont have CFS.
Lol what a joke.
YOu can talk to my CFS doctor, Dr. Jean Cabanne who is an expert in the field and believe sport helps. Maybe not in every cases, but some patients benefit from it. S
Damn 20 years of mistake. It must be tough for you.

July 20, 2011 at 4:14 pm
(16) Rachael says:

“Psychiatrist and other subscribers to the “Wessely School” (most notably Wessely himself are highly selective in the patient cohorts they purport to study. Wessely rarely includes in his studies and trials anyone who is too sick to get to clinics or anyone who is house – or bed bound. When patients become too sick to continue participating in studies, the authors merely claim claim a high drop-out rate; Wessely offers no follow-up.”

“Psychiatrists of the “Wessely School” study patients with “fatigue” (which includes those with psychiatric illness) and then claim that their results relate to ME/CFS, when the literature plainly states that such results cannot be so interpreted. 84 These psychiatrists need to pay greater attention to how they use certain terms (ie. fatigue, chronic fatigue, chronic fatigue syndrome, post-viral fatigue syndrome, ME) because they are not interchangeable, and to treat them as identical or comparable misleads physicians and Government officers. Studies using mixed populations are not useful unless the researchers disaggregate their findings: research should not be summarized across studies using different populations (as was done in the Joint Royal Colleges’ report CR54) because it is very misleading.”

http://www.prohealth.com/fibromyalgia/blog/boardDetail.cfm?id=1105095

July 21, 2011 at 3:05 am
(17) Mark says:

You are hilarious. You are just trying to confirm your claim.
Listen, I have CFS that’s all.
Jody here told you too she has CFS.
Stop trying to making your claims right by saying we dont have CFS. You are a disgrace to the disease.

July 21, 2011 at 8:58 am
(18) Rachael says:

Mark: Post-exertional fatigue is the hallmark feature of CFS/ME. If you don’t exhibit this feature in your “fatigue condition” and if exercise makes you better, then you don’t have CFS/ME.

“The most difficult thing to treat is the severe pain. Half have abnormal MRI scans. 80% have abnormal SPECT scans. 95% have abnormal cognitive-evoked EEG brain maps. Most have abnormal neurological examination. 40% have impaired cutaneous skin test responses to multiple antigens. Most have evidence of T-cell activation. 80% have evidence of an up- regulated 2-5A antiviral pathway. 80% of cases are unable to work or attend school. We admit regularly to hospital … with an inability to care for self”. Comparisons have been made between the prevalence of ME/CFS and multiple sclerosis (MS) in the UK, in the USA and in Australia and have been estimated to be three times, twice and equivalent respectively. Prevalence estimates for ME in Britain vary by a factor of 8: (BECAUSE HE HAS BROADENED THE CASE DEFINITION TO INCLUDE PSYCHIATRIC DISORDERS). Wessely claims that there are over one million “CFS” sufferers in the UK, of which he says 75% have a psychiatric aetiology. ”

http://www.prohealth.com/fibromyalgia/blog/boardDetail.cfm?id=1105095

July 21, 2011 at 4:34 pm
(19) Mark says:

You are an idiot :)
I have Post exertional malaise, so does Judy.
You are not trying to understand. I’m not gonna try to convince someone like you.
20 years in error, I wont be able to help you.
I think you gonna die stupid anyway. Or maybe it’s gonna take another 20 years for you to realize you are wrong.
I’ll try one last time.
Let’s say you have CFS and you are bed ridden and you want cant do much. Your exercise plan would be: Just raising your arm, once a day, every day. Now is it really “exercise”? No it’s not. But for someone with CFS we can say it’s “exercise” since it’s better than not moving at all.

ANother exemple:
Let’s say you have CFS, you can do stuff at home and sometimes go to the grocery store. Your exercise plan would be to start walking 2min each day. Is it exercise? Not really…. but it’s enough physical activity not to trigger post exertional malaise.
Now you increase this time by 10 to 20% each week. Let’s say in 6 Month you can walk 30 min per day. You improved right? but you still cant “run” Now 6 more months down the road, you increased speed slowly and you are able to “run”. Your body adapted from walking 2 min a day to running without creating post exertional malaise.
It works, whatever you think it works in everyone that is able to heal from CFS.
It’s the same principle as pacing, you are slowly able to work longer, do more stuff, talk longer on the phone etc… Your body or brain adapt.
Same principale. “Exercise” is a broad term in CFS, it means staying active.
Now you can either die an idiot, or make an effort to get it.

Listen I’m gonna write it one more time for your small brain.
EXERCISE for CFS is DIFFERENT. It’s just something that makes you move….
I HAVE POST EXERTIONAL MALAISE

July 21, 2011 at 2:51 pm
(20) Rachael says:

Wessely urges patients to undergo exercise programmes, claiming that such programmes are beneficial and safe, and that patients only have problems with their muscles because they are de-conditioned through lying around and that they should exercise back to fitness. When patients simply cannot do so, their state benefits are stopped, as are their insurance payments, largely because of advice from psychiatrists of the “Wessely School” to the DSS / Benefits Agency / permanent health insurance companies that if patients do not co-operate with psychotherapy aimed at changing their “dysfunctional belief” that they are ill, then they do not want to recover. Who would compel those with motor neurone disease or multiple sclerosis to “exercise back to fitness”? Who would condone the withdrawal of their state benefits and insurance policies when they simply could not do so?)

http://www.prohealth.com/fibromyalgia/blog/boardDetail.cfm?id=1105095

The countless reports of athletes contracting CFS (as opposed to athletic burnout) is in itself proof to nullify the argument that deconditioning is a necessary condition accompanying CFS. Many athletes, in their prime, have been diagnosed with CFS. If deconditioning played a major role in the pathophysiology of CFS, athletes would be immune from CFS. The medical literature suggests that athletes are often CFS patients hence the psychosocial model that definitively states that CFS disability is always caused by physical deconditioning is flawed.

http://livingwithchronicfatiguesyndrome.wordpress.com/2010/09/10/a-meta-analysis-of-the-efficacy-of-graded-exercise-therapy-in-treating-cfs-part-1/

July 21, 2011 at 6:03 pm
(21) Rachael says:

Mark: What you don’t get is my 20 years of research were not in error. Through much experimentation I have actually gone from bedridden to very functional (antihistamines). I said I was glad exercise worked for you, but for most people it won’t work and only worsen their symptoms. I can tell by the way you respond, that you are not the typical CFS sufferer. You sound like a very angry, depressed person, (one who is need of a boost). You probably respond very well to exercise because you have enough dopamine in your brain, to make pain killing endorphins, but this is not the case for most CFS sufferers. And like I said before my CFS was triggered by exercise. Top athletes, at the top of their game have become ill with CFS, so it’s not just a matter being out of condition and building up stamina. BTW, did you notice I have not once resorted to childish name-calling like you have; sign of a different illness?

July 22, 2011 at 5:24 pm
(22) MArk says:

“so itís not just a matter being out of condition and building up stamina. ”
You are wrong. How did you go from bedridden to being able to get up and do stuff? By getting used to new activities and slowly increasing. The same principle applies with what I told you and exercise. Slowly building up.
You are ridiculous, trying to determine what kind of illness I have after reading a few statements on the web. I see what kind of “experts” or “scientist” you are. The same kind as those unable to understand the desease because their reasoning is flawed by a falacy. A Doctor would never risk making the kind of statements that you make about my condition. I make childish statement because you deserve to be treated like a child, that’s what you are. You lack humility, reflexion and education.

I’m not saying that exercise can help ALL CFS sufferer. On the contrary, you cant claim that we dont have CFS or did not have CFS because we can do exercise now.
I was not able to do any, you have a missconcepction about the word exercise. You are not trying to make an effort. You are stuck in your pathetic logic and you are trying to make the reality fit your conclusions by looking up small articles/ data sets on the web and claiming we dont have CFS. You suffer from a confirmation bias.
If you dont help yourself, nobody will. We cant even have a conversasion with you because you dont listen. From the start you claim we dont have CFS.

The funnier part of your message is the fact that I’m depressed :) The more you talk, the more I see how hopeless you are.

and btw , tons of studies (real scientifical studies following a statistically accurate model, not stuff you read on a blog) showed exercise helped CFS sufferers. You disagree? Then make you own study, with a validated scientific method and bring up your results. Because so far you are brassing air and talking nonsense :)

July 22, 2011 at 8:09 pm
(23) Rachael says:

“How did you go from bedridden to being able to get up and do stuff? By getting used to new activities and slowly increasing. The same principle applies with what I told you and exercise. Slowly building up.”
*******************
Mark: You are wrong on so many levels! My goal was not to raise my are up and down and then to regain a little bit of stamina, so I could walk to the store, my goal was to feel normal again, to have a real life. I did this through research, reading everything I could about CFS and related illnesses and I eventually learned by suppressing my hyper-reactive immune system, that I began to feel more normal. I suppress my immune system, I don’t try to boost it up with things, like exercise. I’ve been to hell and back a few times, but through experimentation I have found things that I take that make me feel better. Your are like talking to a wall and not worth my time. Keep up the exercise, so that you don’t sink back down into a deep depression, which you were/are most definitely suffering from; good-bye and good-luck!

PS: Read Adrienne’s new blog today “The Monster List of Chronic Fatigue Symptoms”. I don’t just suffer from just fatigue and PEM. I have had and still would have, if I didn’t suppress my immune system, just about everything on this list. Exercise did not make me better and it never will, but what I take has helped suppress my immune system and thus I don’t feel as sick all the time.

July 23, 2011 at 2:48 am
(24) Mark says:

I’m not wrong.
Where you able to get cured in a day? That is did you find a cure? Or was this a slow improvement where you were able to increase the volume of activities?
That’s the second one :) So you are wrong; agaiin LOL
I did not say doing things that make you feel better is not part of the solution. DOing exercise alone is not a “cure”.
But you just proved my point. It took you 20 years to go from bedrriden to where you are now. YOU BUILT UP YOUR TOLERANCE TO ACTIVITY.

Whether you call it exercise or activity, that’s the same principle. You are able to burn more calories per day and do more stuff….
You need to go back to school or something.
Obvisouly I’m too smart for you.
Bye :)

July 23, 2011 at 9:41 pm
(25) Mary-Anne says:

Hi Rachael & Mark;
Reading all your comments made me feel like I was at a tennis match with the ball being pelted back and forth.
I agree with both of you in most ways.
I have had FM/CFS for over 15years after have Glandular Fever. But of course it took years to find a Dr who knew what the problem was.
Everyone suffers to different degrees and I think at different times during the year. I’v just done some gardening in the winter sun and feel great. (for now) I try to do as the doc says and pace myself. However when I do have a good day, although not often enough, I tend to overdo it.
My brother thinks I should get more exercise to make me feel better – what would make me feel better is to smack him one – Unless you suffer from this life changing conditition you don’t know what it’s like. Most days having a shower and getting dressed is an effort. But when you have a good day doesn’t it feel great! Take care-Mary-Anne

July 24, 2011 at 6:06 pm
(26) Mark says:

Hi Mary-Anne,

My brother told me the same thing. They dont know what they are talking about.
But as long as you can stay active, I believe it’s good! Gardening is pretty tiering. It’s physical activity and I think if you can do it regularly (and never over doing it) it will keep you in shape and you will be able to do more and more.

Bye :)

July 25, 2011 at 9:45 am
(27) George Clooney says:

Chronic fatigue syndrome, or CFS, is a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. Persons with CFS most often function at a substantially lower level of activity than they were capable of before the onset of illness. In addition to these key defining characteristics, patients report various nonspecific symptoms, including weakness, muscle pain, impaired memory and/or mental concentration, insomnia, and post-exertional fatigue lasting more than 24 hours. In some cases, CFS can persist for years.

Controlledsubstances.net

December 23, 2011 at 1:20 pm
(28) Arorplashay says:

check for more , just clicks away

January 24, 2012 at 2:13 pm
(29) Paul says:

I have just been doing some research on CFS as I believe I may be a sufferer for the last few years. I find myself struggling everyday to do even basic activities like washing, dressing and housework. I wake up feeling tired even though I sleep 7 hours. My way of combating this has been to take stimulants which keeps me going but then prevents me sleeping so I take sleeping tablets.

I just read with interest Rachel’s findings and the discussion between Rachel and Mark. Could it be that this illness is not so straightforward and both approaches may work (gradual exercise or immune system suppression) for different people with different severity of CFS? I’m interested to explore the immune system suppression angle as I believe I have dust and dairy allergy. The latter is chronic and makes me feel very unwell but unfortunately I seem unable to cut dairy foods completely out of my diet.

April 21, 2012 at 10:55 am
(30) Penelope says:

Mark, you are personally offensive to others, so I can’t listen to you.

My own experience of CFS/ME and exercise is that ‘pacing’ is not a useful concept. I have tried starting small and increasing, but whatever I do, I’m as likely to be bed-bound the next day as feeling perky and wanting to dance. There is no ‘progress’ to be had.

I most certainly have some food intolerances that I’m working on, and I’m inclined to think it is histamine-related. I feel a great deal better and more energetic when I follow a low-histamine diet. The reason I mention that here is that it seems exercise itself causes histamine to be produced, so I’m wondering if my own PEM is simply a histamine-overload; made worse or more tolerable by the diet I’m following at the time.

July 28, 2012 at 5:34 am
(31) DeveraSanders says:

Mark I’m glad you feel better but for a lot of us with PEM , fibromyalgia and Osteoarthritis. Most days you can hardly move and any kind of activity sends you to bed. You need to walk a mile in someone else shoes before you judge that exersice is for everyone. I have read and attended a Webinar by scientists at Pacific University. They concur that when people find their limit and back off that they learn to exercise without overdoing it. great for you but not everyone handles these issues the same. When you need both knees replaced and you are allergic to most Narcotics and have trouble finding a PT because you can’t get them to understand your PEM and they literally put you in bed for days after one session Then you don’t get your surgery. I get Injevctions that I hope last but then there is the arthritis in my hands and back and the all over pain from Fibro that never leaves. Be happy you can do what you do but don’t judge anyone else or try to prove them wrong and that includes everyone because we are all different with different challenges in life. No one is the same with the same disease. Not everyone can do the same things we are all at our own levels. Some of us are finding answers and getting better. Some of us are continually getting worse and getting weaker. So everyone go at your own pace do what you can do and don’t worry about what is happening to others with the same issues we are all at different levels.

July 28, 2012 at 5:34 am
(32) DeveraSanders says:

Mark I’m glad you feel better but for a lot of us with PEM , fibromyalgia and Osteoarthritis. Most days you can hardly move and any kind of activity sends you to bed. You need to walk a mile in someone else shoes before you judge that exersice is for everyone. I have read and attended a Webinar by scientists at Pacific University. They concur that when people find their limit and back off that they learn to exercise without overdoing it. great for you but not everyone handles these issues the same. When you need both knees replaced and you are allergic to most Narcotics and have trouble finding a PT because you can’t get them to understand your PEM and they literally put you in bed for days after one session Then you don’t get your surgery. I get Injevctions that I hope last but then there is the arthritis in my hands and back and the all over pain from Fibro that never leaves. Be happy you can do what you do but don’t judge anyone else or try to prove them wrong and that includes everyone because we are all different with different challenges in life. No one is the same with the same disease. Not everyone can do the same things we are all at our own levels. Some of us are finding answers and getting better. Some of us are continually getting worse and getting weaker. So everyone go at your own pace do what you can do and don’t worry about what is happening to others with the same issues we are all at different levels.

September 28, 2012 at 4:50 am
(33) leesa Bell says:

I was so fortunate to finally be diagnosed with this terrible syndrome. Upon receiving the diagnosis, nothing changed dramatically except I was relieved by the knowledge of finding out that I’m not dying from a terrible illness.
I was even more fortunate to experiment with some ideas that I felt, deep inside, would bring a bit of energy that I’d been lacking, into my day. I began and currently still do, exercise for exactly 8 minutes twice a day. This exercise consists of merely stretching my legs and pointing my toes while very slowly doing rotations with the outstretched leg, that is the first round of activity. The 2nd round of stretches/exercises are done when I get into my bed. I slowly do scissors with my legs lifted and while in the supine position and then I sit up and with my arms, I slowly pretend like I’m swimming, moving my arms with strokes as if in the water, and I top it off with core twists, very slowly I twist from the waist while sitting on my bed and reach out as far as I can with the corresponding arm. Here is the shocking kicker!! Get ready!! Okay so, please keep in mine this consists of a total of 18 minutes of exercise per day- 9 minutes each set and it’s mostly stretching, nothing could be considered strenuous by any means- here is the aforementioned kicker: I lost 31 pounds within 50 days and it was completely by accident! I was not fat at all but I am now at my perfect weight and it happened just by 18 minutes of exercise, and the most important benefit of the stretches/exercises is that I feel better physically. Now, I am not sure if I feel better because of the 18 minutes of stretching OR if I feel better because I lost 31 pounds..?? My best guess is that it’s probably a combination of both.

April 21, 2013 at 2:33 pm
(34) Daniel says:

Why do you keep attacking Mark…? all he said was exactly what the King’s College of London clinic for CFS recommends patients as a treatment…

May 12, 2013 at 6:06 pm
(35) Alex says:

I have this terrible disease, and mostly bed bound. The first symptoms I had was PEM, then came headaches (my head feels like it is on fire), and muscle pain. I have much more symptoms.

I do try to exercise, but I get terrible flare up, What I found that helps somewhat is to nap for 30-60 minutes after lifting weights. I still wonder if it is possible to benefit through gradually increasing exercise, taking naps (as long as needed), suffering the flare ups hoping that in LONG term (not days, weeks, or months) metabolic and other positive effects of exercise will somehow help.

I maybe lucky that within few minutes of lifting weights, the pump and then the endorphins shoot at such intensity that I can continue to lift weights for 50-100 minutes every other day. If not for endorphins, I wouldn’t be able to do it.

Any ideas?

June 19, 2013 at 12:35 pm
(36) Amber777 says:

I would like to know if I have PEM… I work every other day because the day I have after an 8 hour shift is mostly spent lying down not moving, I can hardly muster up any energy to get dressed, I rarely go out on my days off. I don’t usually sleep on my days off, but I would be happy to not move at all day. I just can’t explain the exhaustion I feel. If I want to go out anywhere it’s usually the same afternoon as I work. I don’t even know for what benefits getting a diagnoses would be? When I decided to lay some patio slabs in my garden I didn’t move for 2 days after one weekend and my weekend of was wasted.

March 18, 2014 at 7:54 pm
(37) Sally says:

Did you saying running again?!! What?! Perhaps you had a virus and it took a while to recover but as for having ME or CFS I can’t believe that you had it sorry!

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