Last Wednesday, an article was printed in the Irish Independent stating: “‘Sufferers of chronic fatigue syndrome can benefit from exercise.” (Read full article here)
As an ME/CFS patient, this article did more than make my blood boil. Should exercise benefit patients, then why are so many of us housebound and bedridden? If exercise was a cure, then ME/CFS would be extinct. Those of you who have read my earlier blogs know, I tried using exercise to make me better, I undertook Graded Exercise Therapy and it made me worse, not better.
And those of you suffering from ME/CFS know only too well, the ill effects of GET on our bodies.
Needless to say, upon reading the article I posted a response to the paper here and my letter has been printed in todays edition of the Irish Independent.
Exercise did not help my ME
As an ME/chronic fatigue syndrome (CFS) patient who has tried Graded Exercise Therapy (GET), I was deeply upset to read the article ‘Sufferers of chronic fatigue syndrome ‘can benefit from exercise” (Irish Independent, January 14).
In fact, GET made me worse, not better.
You see, ME patients suffer from a range of symptoms, one of which is Post Exercise Malaise (PEM), where a patient’s body “crashes” after mental and physical exercise.
The extent of PEM differs between patients, as ME/CFS presents itself in mild to moderate to severe in form. Those severely affected are bedridden.
I can’t and won’t speak for other ME/CFS patients, but I can speak for myself, as a patient who has lived with this debilitating condition for over three years (I contracted it when I was 30 years old).
My symptoms range from debilitating fatigue, nausea, lack of concentration, PEM, sore throat, sore ears, muscle pain, joint pain, swollen glands, electric shocks in my fingers, torso spasms and insomnia. Different days throw up a differing variety of symptoms.
If GET did cure ME/CFS, I’d be better by now, having tried a programme under the supervision of a consultant for 18 months.
Instead of increasing exercise, we had to pull back on my exercise, as my body continually crashed.
As a regular reader of your paper, I encourage your journalists to further investigate ME/CFS and look forward to reading well-founded articles concerning research in the field of ME/CFS.
Marie Hanna Curran
***Note: The editor amended my letter. I stated “Differing days throw up a differing variety of symptoms. If GET did cure ME/CFS, I’d be better by now, having tried a program under a consultant for 18 months. Instead of increasing exercise, we had to pull back on my exercise, as my body continually crashed. Ordinarily, I can pace myself about my home (I’m housebound 90% of the time), completing small chores such as cooking my dinner between resting periods. During a crash, I’m bedbound, walking to the bathroom the greatest victory in my day. I’d very much like the author of this article to look into the facts behind the studies mentioned. Some studies claiming to be cures for CFS and ME have in fact used control groups suffering from chronic fatigue, not ME/CFS”.***
For those of you unfamiliar with the controversy surrounding exercise and ME/CFS. Here is a short backstory: In the UK, a reported five million pounds was spent on research called the PACE trial.
To quote the authors, Peter D White, Michael C Sharpe et al, this study was “a randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy”.
The outcome of this research promoted the use of GET and CBT for ME/CFS patients. However, upon close inspection, it was found the authors studied a group of people suffering from idiopathic chronic fatigue, depression, and any state of fatigue, none of which are depictive of the illness ME/CFS.
Yet, media outlets such as this one, promote such studies, telling ME/CFS patients, exercise can help us! If only it did..