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Exercise protocols prescribed for myalgic encephalomyelitis (ME) were powerful enough for Cherry to ignore the physiological realities of her disease. Cherry is now 100 percent bedridden.
When 16-year-old Cherry from North London began the treatment prescribed for her myalgic encephalomyelitis (ME) in 2013, she was able to walk to her local hospital’s Fatigue Clinic. Her consultant had fast-tracked Cherry to immediately begin sessions of Graded Exercise Therapy (GET), one of the main treatments recommended by the NHS in the UK, in which patients work to gradually increase their activity and exercise levels.
It quickly became clear, however, that pushing herself to build her activity levels was worsening Cherry. After six months of trying to push herself to sustain this programme, Cherry had to send her mother to her six-month review consultation as she had become too weak to leave her bed, and had increasing neurological symptoms such as severe, daily headaches.
“We embarked on it in good faith because the doctor had a very good manner,” said Cherry’s mother, Rachel.
Cherry’s deterioration after undergoing GET is a common experience in the ME community. An analysis of over 18,000 patient responses to surveys on management of ME symptoms over a five year period reported that 57% deteriorated following GET.
Research shows that people with ME have an abnormal physiological response to exercise. Studies show that after exercising people with ME have reduced blood flow to the brain and heart (Neary et al., 2008; Peterson et al., 1994), reduced oxygen uptake in hemoglobin (Miller et al., 2015), reduced oxygen utilization (Snell et al., 2013, Vermeulen & Vermeulen, 2014), and abnormal gene expression related to immunity, metabolism and the nervous system.
Two-day exercise testing (CPET) shows that patients cannot perform the same activity two days in a row, whereas healthy, deconditioned people tend to do better on the second day than the first. The test measures metabolic products and does not rely on the patient’s effort.
Despite the research and patients’ continued reports of being harmed by graded exercise therapy, doctors continue to recommend it as a frontline treatment for ME in accordance with the National Institute for Health and Care Excellence (NICE) guidelines.
At the appointment with Cherry’s consultant, where her mother had to be sent on her behalf, the doctor had little advice after hearing that Cherry had declined considerably following GET, as the only other NHS-approved alternative treatment, Cognitive Behavioural Therapy, wasn’t accessible to Cherry as she was too ill to leave the house. The doctor did say that it would be remiss not to mention the Lightning Process as a possible next step for Cherry, which had been generating good reports especially in use with young people.
By this time, Cherry and her mother were desperate to try anything that would help Cherry return to her life.
The Lightning Process is based on the philosophy that participants with diseases like ME, multiple sclerosis, chronic pain or depression can train their brains to overcome their physiological disease by thinking positive thoughts about their health, and counteracting negative ones by establishing “new neural pathways”. Participants are encouraged to stop saying they “have” an illness, and start saying they are “doing” an illness, implying that the participant should take responsibility for halting their disease.
“At the endorsement of the doctor, it’s something we thought that we should try,” Cherry’s mother said. “Cherry didn’t have the strength to read the Lightning Process preparatory book but she listened to the audiobook version teaching for a few minutes each day.”
The Lightning Process had an immediate, dramatic effect. Within three days, Cherry was suddenly able to get out of bed, leave the flat and was out in the park chatting with her friends.
“It seemed miraculous,” Cherry’s mother said. “The program is essentially about mind over matter. Cherry has a very strong willpower and she was able to override what her body was telling her.”
In hindsight, it was clear from the beginning that Cherry’s system was struggling, however. She was succeeding at the Lightning Process by ignoring the warning signals from her body.
“She didn’t want to see it,” explained Cherry’s mum. “She overrode what she was feeling. She later told me that when she was out with friends, her vision would become so blurred that she was afraid she was going to get hit by a bus.”
Six weeks later, Cherry came down with tonsillitis-like symptoms. Cherry’s mother said it had been clear that her daughter was fading quickly even as she worked so hard to overcome the disease by believing that she was, in fact, well. A few months later, in the autumn, Cherry started 6th Form for the second time. She came down with a cold, and never recovered, and from that point onwards became mainly housebound.
Cherry declined rapidly. She became too weak to leave her bedroom. She attempted to try the Lightning Process again, thinking that she just needed another refresher, but it made no difference. At this point, the Lightning Process practitioner gave up on Cherry, saying that she had some sort of “block” and couldn’t understand why this approach wasn’t working for her.
“Cherry was really angry and confused because they made it seem like it was her fault that she had not recovered,” said Cherry’s mum. “She was young. She felt confused because she had always put her heart and soul into everything. She can’t speak for herself now but she feels very angry at how the Lightning Process played with her mind and made her doubt herself.”
Four years after attempting to override her system with willful physical and mental exercise, Cherry, now 21 years old, spends 24-hours per day in a darkened room, 100 percent bed bound, too weak to speak or swallow, and surviving on a feeding tube.
“It seems innocuous – how can gentle exercise or good thoughts possibly be dangerous?” Cherry’s mum said. “The problem with the disease is that you can do massive damage to your body systems, but it often doesn’t show up until months later. In hindsight I believe that the hospital consultant should have told Cherry to take a year and rest and let her body heal.”
NICE continues to recommend Graded Exercise Therapy and Cognitive Behavioural Therapy for people with ME based on the notion that patients have simply become deconditioned and need assistance regaining their vitality based on findings from the PACE trial. There has been widespread criticism of the PACE trial, however, from the scientific community culminating in a letter signed by more than 100 scientists, which points to major methodological flaws in the trial.
The international scientific consensus on ME is that it is a multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. The defining symptom of ME is post-exertional malaise – a severe worsening of symptoms after even minimal exertion.
This Thursday, the UK Parliament will take up the issue of ME in a debate on treatment and research for the disease. The debate will take place at the Main Chamber on Thursday afternoon, Jan 24th. This debate follows two critical Westminster Hall debates about ME in 2018.
The call for a debate on ME has had cross party support from MPs who petitioned for a full debate on ME in the House of Commons Main Chamber.
Belle and Sebastian singer, Stuart Murdoch, who has had ME for 28-years, points to the stigma facing the ME community.
“We are ghosts. Disregarded, ignored and, at worse, not believed. It doubles the burden. We cluster with each other for help and support like urban lepers. All we want is to get better. All we want is to prove that we are worth something. Funding, research, dedicated rehabilitation programmes – these could be the key to the door for so many. We’re not going away. It really would be cheaper to try to make us better.”
Read #MEAction’s parliamentary briefing on myalgic encephalomyelitis here.