By R. Amor
Laura Wilding sat bundled up in the back seat of the car. She had a pillow behind her back, a sofa cushion on the head rest and a blanket wrapped around her. Under her mother’s pressure, her GP had finally capitulated and she’d been referred to the nearest specialist consultant. The wait for an appointment had been four months. The drive had been an hour and a half and just the journey there had exhausted her. During her visit the consultant had diagnosed her with ME. The assessment had simply involved a discussion of her medical history and symptoms; no physical examination had been carried out. She’d also been asked if she’d suffered from child abuse, a question to which she’d replied, flatly and firmly, that she hadn’t.
Truth be told, she’d never even suffered from bullying or peer pressure. She’d always been popular at school, vivacious and outgoing, her tastes bang on trend. With the deterioration of her health though, her list of friends was falling away fast. Sleepovers and dates were no longer on the agenda.
Having finally been diagnosed, Laura was now to be referred back to her regular GP, who was to refer her to the multi-disciplinary team at her nearest specialist service.
Another three months later, Laura and her mother were once again in the car on their way to a physio appointment at the specialist clinic. Laura had been ill for a year now. She had long since dropped out of her swing dancing classes and her old social life had completely collapsed.
The evening her boyfriend had told her he’d finished with her, she’d gone home feeling cold and numb inside. He’d had enough of his suddenly sick girlfriend. She’d lain awake in bed all night, unable to cry, remembering when they’d first met.
He’d been in the year above her at school: a dark, good looking youth with a talent for the saxophone. They’d met through the school orchestra. Laura sang in the choir and occasionally the choir would practice together with the orchestra after school. One evening, after they’d been rehearsing together in the lead up to a show for Christmas, they’d got talking in the hall when everyone else was messing around. They’d turned out to have a lot in common: similar tastes in music; mutual opinions on the teachers and the school rules; a shared hero worship of Hayley Williams, lead singer of Paramore. He’d asked her out to Pizza Hut a couple of times and then, the evening after the performance, he’d asked her round to meet his folks.
The following morning Laura had vomited violently.
However, after her diagnosis she’d started using ME Facebook groups and chat forums online and was beginning to create a new global social circle.
In the last couple of months, her health had begun to stabilise. She was attending school more regularly, though her mother was still having to pick her up fairly often. This was partly due to the support and advice of the other ME sufferers she was meeting online. Through them she’d learnt about “pacing”. Along with her mother she’d worked out her “baseline”, how much activity she could manage with her energy. Laura had started a diary of her symptoms and, together with her mother, they’d developed a loose routine she could manage which included periods of resting, low energy activity like card making and high energy activity like attending school.
Laura had originally been studying for thirteen GCSEs and was predicted straight As, despite her lax attitude to homework. With the onset of her illness she’d dropped out of most of them though, only managing to keep up with Maths, English and double sciences. Now, with her health stabilising she’d picked up some of the subjects she’d dropped including music and drama. The loss of these subjects in her life had made her more aware of just how much they meant to her. She’d now firmly decided to do performing arts once she’d left school.
Now, with Laura’s GCSE exams fast approaching, they were en route to the appointment which would finally bring an end to all the confusion with the health professionals and the first pieces of professional advice.
The physio’s office was on the second floor of the hospital. Dust motes danced in the shafts of sunlight slanting across the long corridor that led to it.
Entering the room, they were met by a plump, round faced, middle aged woman sorting through a desk. They seated themselves.
“Hi Laura,” the woman finally looked up and greeted her cheerfully. “I’m Rebecca Stuart, your local ME specialist physio. I’ve been given a referral for you because apparently you’re not feeling too well at the moment. How are you feeling today?”
“Not too bad,” Laura replied. “I had vertigo when I woke up but I’m feeling better now.”
“That’s great,” Rebecca replied enthusiastically. “Hopefully it’s a good sign. How much activity are you managing on a typical day?”
“I’m managing to attend school most days,” Laura replied.
“So you’re not attending school every day?” Rebecca asked.
“How long’s that been going on for?”
“Since I fell ill. I’ve been managing more school recently than I was though.”
“Goodness, that’s bad!” Rebecca exclaimed “ What about physical exercise? Are you managing any of that?”
“No. I used to dance but I gave up because I simply couldn’t manage it anymore.”
“Why could you “simply not manage it anymore”?” Rebecca returned, sounding slightly sceptical.
“Because,” Laura struggled to form a response, “I just don’t have the energy, the strength.”
“I see,” Rebecca replied. “Well, what I’m recommending for you will involve some physical activity on your part, and it might seem scary at first, but it will improve your strength and stamina in the long term. You see, because you’ve been ill for so long, your body will have got used to very little activity and the slightest exertion will seem exhausting. Graded exercise therapy is a form of therapy that will gradually increase your body’s limits. It will take a while but it will actually be good for you, as slowly your body will become adjusted to more activity again.”
For some odd reason Laura felt a brief, cold grip of fear at her heart.
On the drive home her mother was much more upbeat. Rebecca had told them about working out a baseline, something Laura and her mother had explained they’d already established. They’d then agreed on an increase in Laura’s usual activities. Rebecca had explained that the increase would only be slight but it was important to carry it out at least five days a week, even on bad days. Gradually, over a period of time, this increase in her activities would help Laura’s health improve.
“So, we’ve finally got a plan in place,” gushed her mother enthusiastically. “Rebecca’s being a great support already. I’m so proud of you too, how you answered her questions.”
Laura attempted to hide how dubious she felt.
Laura was in tears, seated once more in Rebecca’s office. It was three weeks into her GET program. The slight increase in activity they’d agreed upon had been a two minute walk around the block each day, an increase Laura had reluctantly agreed with Rebecca. Unfortunately, though, instead of it becoming easier, it had become increasingly difficult. Her mother was often being forced to physically support her as she walked and her rests stops had become more frequent and prolonged. After each exertion she’d collapse into bed, feeling like a washed out rag doll, bathed in sweat, her limbs limp, aching and exhausted. She was being forced to skip school more frequently, her exhaustion and brain fog were no longer up to it.
“It will increase your symptoms for a short while afterwards,” Rebecca attempted to explain. “But it’s nothing major. The point is your body’s readjusting. I think your taking the wrong attitude to this. You just need to start thinking more positively.”
Laura felt despair and desperation wash over her. Tears brimmed in her eyes. How could she explain that she was now so wrought with symptoms, drained and aching, that she could hardly prepare herself for bed at the end of the day? Her mother was having to help her undress and brush her teeth. Even getting to the toilet was almost too much; often she was so tired and weak it was as much as she could do to crawl along the floor. “I actually think it’s about time we started thinking about increasing your current baseline,” Rebecca continued. “You’ve been practicing your current baseline for a while now. It should be about time to start thinking about what more you could be managing.
Once again it’ll only be a slight increase but remember your symptoms might worsen for the first few days. It’s not something to worry about.”
Laura lay in bed that summer, unable to move. Outside the window life moved on, oblivious; the sun shone in a endlessly clear, blue sky; kids shrieked on their bicycles; neighbours mowed their lawns and did DIY to the backing sound of Katy Perry and Jack Johnson. Laura was barely aware of it all, apart from the noise which felt like a knife cutting through her skull, and the unbearable heat which caused her intense nausea and vomiting. Her body felt as if it was in the grip of a tsunami. The curtains were kept constantly drawn, lined with blackout material and the edges stuck down with blutac. Even then it wasn’t dark enough. She wore a thick black scarf around her eyes and large, electric ear defenders. She used bed pans as she was too weak even to crawl to the toilet. She was living on Fortisip as she was too tired to eat. On the rare occasions she did manage something her body often rejected it. She was no longer attending the clinic; she was too ill to attend so they’d dropped her from their lists. She’d failed to sit any of her GCSE exams; she’d dropped out of school totally unqualified.
One of the main symptoms suffered by ME/CFS sufferers is post exertional malaise or increase of symptoms after both physical and mental exertion (PEM).
Several studies have shown atypical responses to exercise in patients with ME/CFS. These studies show that upon completion of a first clinical cardiopulmonary exercise testing (CPET) ME/CFS patients will show similar results to those of healthy controls. Upon a secondary CPET though, after a twenty four hour break, their functionality compared with healthy, but deconditioned, controls is very dissimilar.
In deconditioned people the anaerobic threshold goes up with repeated exercise; in ME patients it goes down. So in many instances, enforced exercise renders ME/CFS sufferers bed-bound for prolonged periods. The resulting incapacity is sometimes inappropriately attributed to psychological causes, for which there is no scientific evidence base whatsoever.
It is worth keeping in mind the adage, first set down by Hippocrates, of “first do no harm” when it comes to prescribing Graded exercise therapy for ME/CFS sufferers.