ME and exercise.
Research into why harmful.

Scientific research give clues as to why the illness CFS/ ME and exercise can be a dangerous combination.

CFS = Chronic Fatigue Syndrome.
ME = Myalgic Encephalomyelitis. 

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On this page I share articles by other people about research into CFS/ ME and exercise.
The observation that exercise is not tolerated by the body and can be harmful.
And scientific research into why this might be.

Reading about 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.

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RESEARCH INTO CFS/ ME AND EXERCISE

ME and Exercise: The duration of postexertional malaise symptoms following a known stressor

When: March 15, 2023

What? Effort to quantify the duration of postexertional malaise (PME) symptoms following a known stressor.

Published where: National library of medicine,

Conclusion:

ME/CFS subjects took about two weeks on average to recover from the stressor.

The control participants only took two days to recover.

This data confirms that those living with ME/CFS experience post exertional malaise (PME) and take an extended amount of time to recover.

The implication of this research is that well informed consent must be given prior to recommending exercise for people with Myalgic Encephalomyelitis CFS.

Find out more here: https://pubmed.ncbi.nlm.nih.gov/36984572/

ME and Exercise: People with CFS/ME report their findings

Pie chart of ME Association Report on The Consequences of CBT, GET and PacingME Association Report on The Consequences of CBT, GET and Pacing

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 ME 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 CFS/ ME 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.

Quote relating to ME and exercise.

CFS/ ME and Exercise: Why can't people with ME / CFS exercise normally?


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 Love,

Katherine



Post exertional fatigue found in people with Myalgic Encephalomyelitis

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.

http://ptjournal.apta.org

Effect of Acute Exercise on Fatigue in People with ME/CFS/SEID: A Meta-analysis

Researchers:
Bryan. D. Loy, Patrick. J. O’Connor, and Rodney. K. Dishman

This is a study pulling together research on the effect of the combination of CFS /ME and exercise.

As a starting point it states.
"A prominent symptom of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, or Systemic Exertion Intolerance Disease (ME/CFS/SEID) is persistent fatigue that is worsened by physical exertion."

The study calls for further research.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5026555/

The Benefits of Short Bursts of Exercise

Relevant to CFS/ ME 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,

www.sciencedaily.com/releases/2013/01/130129100118.htm

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Cognitive Behavioural Therapy and CFS

ME 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.

My 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 for Chronic Fatigue Syndrome / ME

The PACE trial tested the interventions cognitive behavioural therapy and graded exercise therapy.

As at 2016 Alem Matthees, health activist, asked for re-analysis of the results in accordance with appropriate standards.

Published March 22nd 2018

The BBC reports on the 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

Links relevant to ME and Exercise

  • Research into the energy metabolism of patients with the illness ME - Myalgic Encephalomyelitis.
  • Click below for another article which includes, the answer to "What is Post Exertional Malaise?" and more on the danger of too much exercise for your current level of health.

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