Just another Fairy Tale?
If we've learned anything these past few years, it's that old verse about believing in what we read, and as I head toward another New Year, I do so knowing I once believed in what I read. Attempting to use those words to better my life.
It was late 2011 when a mundane head cold/virus moved into my body and as 2012 began, it did so with the accompaniment of doctor visits, antibiotics, specialist visits and a hospital stay.
In April 2012 I received the diagnosis of ME and while I was grappling with the symptoms: severe fatigue, headaches, muscle and bone pain, nausea and cognitive difficulties, I did so as I lost my job, my hobbies and social life.
Parallel to my losing, in the UK, a paper called The PACE Trial was published in 2011 by Peter White from Queen Mary University of London, Michael Sharpe from Oxford University and Trudie Chalder from King’s College London.
This trial concluded Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) were effective treatments for ME/CFS and these findings were published in the reputable Lancet Journal.
Snazzy headlines such as “Sufferers can overcome symptoms of ME with positive thinking and exercise” were printed in many media outlets and as they were, I began Graded Exercise Therapy under the direction of a consultant. Both of us believing in the premise of this therapy, both us wishing to see me better. I had an added bonus, or so I thought. I'd been a runner with my local athletic club. I was fit. I loved exercise and believed in exercise.
Unfortunately there was no happy ending to this therapy.
Throughout 2012 and into late 2013 my consultant watched on as I worsened.
Having been able to walk for twenty minutes at the beginning of the programme, I was reduced to five minutes walking by late 2013.
Every time we increased my exercise, my body retaliated and I found myself riding out a week to ten-day crash. A crash that left me bedridden and unable to complete basic house chores.
While I lost my job and hobbies and was limited by ME, I was able to carry out chores such as cooking my own meals and washing dishes, so long as I paced myself, resting between each activity but during a crash my husband had to take the wheel. And while I gradually returned to these capabilities after each crash, I returned to exercise unable to reach the target I’d been on and so my exercise was continually reduced, not increased.
In January 2014 my consultant agreed the programme was not working and I was pulled from GET.
As it turned out, the findings from the paper published in 2011 had been altered. GET wasn’t all it had been touted to be.
A request from an Australian patient via the Freedom of Information legislation to release the data of the trial was granted but the researchers appealed the ruling. They lost their appeal and the data was eventually released in 2016.
As per the ME Association in the UK “An Independent team of researchers reviewed the data to discover that the PACE team had inflated the benefits of CBT and exercise three fold.”
Also, in selecting patients for this trial, the researchers used what is known as the Oxford Criteria, an assessment whereby a patient must suffer from debilitating fatigue for at least six months with severe fatigue as their main symptom. Of course, such a symptom can present in other illnesses such as depression and chronic fatigue.
The preferred criteria for use in trials is the Canadian Criteria, which includes the symptom of PEM (Post Exertional Malaise) in assessing a patient for ME, meaning a patients symptoms worsen as a result of both physical and mental exertion.
Due to this symptom, I have to continually pace myself, working within the limitations of this illness and in doing so I can maintain this threshold of activity.
It's just a shame that as we head into 2020 there are still medical professionals who believe exercise is a cure for ME, worse still, there are medical professionals who mix up ME with Chronic fatigue. The maths is simple, chronic fatigue = one symptom. Dig deep enough and a reason can be found. Sort out the reason and betterment can be found. ME is a complex illness with a range of symptoms including severe fatigue.
Thankfully there is hope on our horizon as research is ramping up and current studies point towards irregularities at a cellular level. The more researchers dig, the more we will learn about an illness that's still misunderstood, mislabeled, and mistreated.
All that said, I never forget that I’m one of the luckier patients.
A reported 25% of patients are bedridden due to ME. Now, imagine telling them to get up, part-take in GET and exercise? Imagine telling them they’d be bettered for doing so?
Not everything can be believed. It’s just a shame such tales aren’t kept between the covers of a Grimm fairy tale.