CFS and exercise in the normal sense of the word don't mix well.
POST EXERTIONAL FATIGUE is the official term for the aggravation of CFS symptoms that follows exercise.
Post exertional fatigue is a key symptom in the diagnosis of ME or CFS (Myalgic Encephalomyelitis or Chronic Fatigue Syndrome).
For those of us living with CFS, particular those who love to exercise, it can be deeply upsetting not to be able to engage in exercise and feel one's body moving freely.
In a world where we regard exercise as healthy and necessary, the dangers of exercise can be one of the hardest symptoms for a family member to understand.
CFS and exercise can be combined.
When you live with CFS/ME think of EXERCISE as a level of movement and activity which you can carry out sustainably without aggravating the symptoms.
This may not look like exercise to yourself or other people, but please give yourself credit for doing what you can.
It is common - if not universal - to get annoyed with yourself when you live with chronic illness.
Be gentle on yourself.
You are a unique person,
with unique character traits,
living with an illness which is manifesting in a unique way in your body.
Experiment gently to find a level of CFS exercise which is right for you.
At a level of severe CFS or severe ME this may mean being
propped up three times a day to be fed a meal - this was how it was for me for many years.
With the illness mild CFS or mild ME, it might mean going for a 20 minute walk each day.
You will work it out.
You are the best expert on yourself.
If you are looking for gentle CFS exercise, I recommend Qigong which I do each day.
Qigong also serves as a form of alternative healing.
On this page I share articles by other people about research
into CFS and exercise.
This ME and Chronic Fatigue Syndrome research can be highly validating if you are feeling bad about yourself that you can’t exercise as much you would like to do.
It may also help you with benefits claims or with explaining to loved ones why you can’t engage in activities in the way you would like to do.
I have quoted names and papers in case some of you wish to look further into the research results.
My advice for Chronic Fatigue Syndrome is to pace and switch to find a sustainable level of activity for you.
Scroll down or click on a link if given
Quotes from Doctors about the dangers of exercise and Chronic Fatigue Syndrome or ME
Research into CFS and exercise
"Like pharmaceutical therapies, prescribing exercise as
therapy, an activity that is gaining in acceptance throughout the medical
community, must be predicated on understanding the risks and benefits of
exercise as thoroughly as possible."
Journal of Applied Physiology 2007; 103: 700-709
Dangerous exercise: lessons learned from dysregulated inflammatory responses to physical activity Cooper DM at Al
"The most important thing about exercise is not to have patients [with ME or CFS] do aerobic exercise.
I believe that even progressive aerobic exercise is counter-productive. If you have a defect in mitochondrial function and you push the mitochondria by exercise, you kill the DNA"
Dr Cheney, International Congress of Bioenergetic Medicine, Lecture 5th to 7th February 1999
Doctor Cheney invites patients to "move within the limits of your illness".
On the subject of graded exercise he says:
"the whole idea that you can take a disease like this and exercise your way to health is foolishness. It is insane."
"From the medico-legal point of view, health professionals who prescribe exercise programs must do so with just as much caution as would be taken with medication."
British Journal of Nursing, volume 15, number 12, 2006, pp 662-669, Doctor Charles Shepherd, medical adviser, ME Association
When: Published 30 May 2015
What: a survey to determine the response of people with ME (Myalgic Encephalomyelitis) to a course of Cognitive Behavioural Therapy (CBT), Graded Exercise Therapy (GET) or pacing.
Who published the report: The ME Association, a UK based charity.
Number of participants: 1428 people with CFSME answered the questionnaire.
Results: Amongst many other findings, this
extensive report finds that 74% of patients with CFS/ME became more ill as a result of GET
- Graded Exercise Therapy.
“…the majority of patients attending Pacing courses with no overlapping elements found this management approach more appropriate to their needs than did those who attended either CBT only or GET only courses.”
Where can I read more? At the time of writing, you can download the report on CFS and exercise from the ME Association website.
Katherine T Owen comments:
Congratulations and gratitude to the ME Association for this extensive study and report into ME, CFS and exercise.
I know from first hand experience
what it is like to be pressured to engage in a ‘treatment’.
I was threatened to have my care provision taken away if I did not do so.
I am so pleased that this research has been undertaken.
My heart goes out to all those who have had the 'treatment' of GET forced on them and have developed more severe CFS/ME as a result.
Research into CFS Symptoms of muscle and joint pain.
The scientific research finding:
Two key findings are as follows:
1. People with CFS and ME have acid accumulation in their muscles up to 20 times the normal amount. These findings were similar for people living with other chronic disease.
2. Two types of muscle cell
abnormalities were seen. One may improve with exercise, but the other
one will not. This may explain why some people are helped by graded
exercise whereas others are made worse.
Who is behind the research finding:
Dr. Newton, Dean of clinical medicine at the
School of Clinical Medical Sciences of Newcastle University, England, UK.
When: July 2014
Where can I learn more:
Listen to the video below.
How wonderful it will be if these acid accumulations can be reversed.
Wishing you a better day tomorrow than today.
With regard to the work of Dr Newton above, post exertional fatigue was similarly demonstrated by the Workwell Foundation in the US.
They had a two-day testing
protocol for ME.
ME patients were compared with people who lived a sedentary life but were not disabled.
The results demonstrated the post exertional increase of symptoms in ME patients.
The Workwell Foundation strongly advises against using aerobic exercise in an attempt to improve the health of people with ME.
When: November 2013
Research by Professor Van Ness, published in Physical Therapy as – Discriminative Validity of Metabolic And Workload Measurements To Identify Individuals With Chronic Fatigue Syndrome, Christopher R Snell at Al. Volume 93 November 2013 pages 1484– 1492.
Relevant to CFS and Exercise. First published 28 Feb 2013
New research shows that short bursts of activity can make a great difference to your health. For example, taking the stairs.
This is good news for those who cannot sustain a period of exercise, and feel concerned that you are not getting 20 minutes of aerobic exercise three times a week, as so often recommended.
I find that some days I can do vigourous exercise - such as mad dancing :-) for a very short period - maybe two minutes - - and my body will take it when it would not take a more sustained activity.
(There are other days where it would not be wise to do this.)
I know there are some of you reading this for whom taking the stairs seems a different world at the moment. My heart goes out to you.
As always, it is your body. Please find what works for you.
Here is a link to the article,
Move to TOP
CFS and Exercise: First published April 2012
Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
The link above may be useful information if you are being pressured to do Cognitive Behavioural Therapy (CBT) or Graded Exercise Therapy (GET) when you believe it would be harmful to you.
My view is that CBT can be a good tool when used wisely.
CBT can however cause great damage if used without intelligence by those with with poor understanding of the illness CFS or ME.
If you have severe CFS or ME then unfortunately you may not be able to take the risk with your health of trying CBT unless you are already confident of the skills of the practitioner concerned.
view is that Graded Exercise Therapy is extremely unwise.
Graded Activity Therapy, however, like CBT, could be good in the hands of someone good who adapts the tool to the level of the person with CFS.
It is likely that at certain stages and severity of the illness ME/CFS both Graded Exercise Therapy and Graded Activity Therapy, would be dangerous.
For myself, it was only once the muscle fatigue lessened after I did the Lightning Process that I was able to start building up activity.
I then had no problem doing so on my own. I listened to my body and built up activity intuitively.
I have not yet had success at building up methodically.
I find that the ability of my body to take exercise varies with the level of symptoms.
I do however acknowledge that if I have the opportunity to restrain from high activity at my level of health, I experience a great reduction in symptoms. It is possible that if I stuck to a certain level of activity and built up slowly I would experience an even greater increase in health.
The PACE trial tested the interventions cognitive behavioural therapy and graded exercise therapy.
As at 2016 Alem Matthees, health activist, was asking for re-analysis of the results in accordance with appropriate standards.
Published March 22nd 2018
The BBC reports on the new analysis of the trial. It found that graded exercise therapy demonstrates "no long-term benefits at all".
Read more at http://www.bbc.co.uk/news/health-43490335