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The Effects of Graded Exercise Therapy and Positive Thinking on a Young Girl with ME

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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.

 

 

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9 comments on “The Effects of Graded Exercise Therapy and Positive Thinking on a Young Girl with ME
  1. Katharine Keeling Spann says:

    This also happened to me. Although not prescribed by a Doctor; I was able to somewhat manage my 14 year M.E. up until the time I had 3 daughters marry within 3 years. Financially unable to hire a wedding planner (and with my girls finishing up their University educations until weeks before the wedding); the entire event fell to me to plan and carry out each detail. Although my body was telling me to stop ~ I felt guilty if I couldn’t give each girl their dream wedding on our shoestring budget. By the third wedding-I was unable to walk down the aisle. I laid down on the front pew during the whole service and had to be taken home, missing the entire reception.
    I stayed in bed trying to recover for 3 weeks to find that I was becoming LESS able by the day! By 4 months after the last wedding I could no longer bathe or get up to sit at the table to eat.
    It’s been 5 years since that last wedding, and I am completely bedridden. I rarely have the energy to even read any social media; let alone respond to it. But this article made me KNOW that I wasn’t alone in this phenomenon. And it wasn’t ALL IN MY HEAD!!
    Although I live in the U.S., my new doctor has prescribed this graded excercise therapy for me due to extensive deconditioning. He is threatening me if I don’t do it and complete the workbook. He doesn’t understand why I’m so adversed to this idea.
    This article should explain it to him in no uncertain terms.
    Thank you!

  2. Eilidh Hewitt says:

    An excellent and very sobering account of what happens when patients are misled by behavioural therapy. This should never happen and is an absolute disgrace.

    One thought for Stuart Murdoch
    Be careful what you ask for, CBT and GET clinics are fundamentally rehabilitation clinics. Rehabilitation as such not really possible for people with ME as it is not compatible with Pacing.

  3. Simon Lawrence says:

    The legacy of Sir Simon Charles Wessely FMedSci lives on and patients continue to “live” through unspeakable suffering.

  4. Mandy says:

    This breaks my heart, especially as we’re both in North London, so we probably saw the same people at the same ME Clinic… I also trusted the doctors there. GET and pushing through the pain, as my physio told me I had to do to get better, took me from being able to walk short distances and having a tiny bit of quality of life, to being ten times worse: constant pain, weakness, tremors, housebound most of the time and relying on a wheelchair on the rare occasions I can leave my flat… So I can certainly empathise with the anger and betrayal she is feeling.

  5. Miss H Parr says:

    When will people wake up to the fact that you can’t just ‘will yourself better’ from this dreadful illness? I have had this twice and it destroyed my life. I have since recovered, and will continue to fight for other sufferers who cannot be heard.There are plenty of ‘health experts’ out there who will happily extract money from desperate victims with their wonderful treatments. The treatment I had was TIME. Years of rest sadly. Two of my family also suffered with this illness, and we all had problems with our immune systems. As a child, I went through utter hell with M.E as my GP refused to believe that I was ill, and suggested that I had ‘School Phobia’!
    Whoever thought up Graded Exercise Therapy clearly has no idea what it is like to be bed bound with this illness, and unable to move.

  6. Benjamin Kidd-Bentley says:

    I’ve had ME for 29 years. I’m 47. I am in constant pain and exhaustian.
    The tried graded exercise with me. It put me back years! They’ve no idea what their doing or how it impacts on lives!
    I have slso have been diagnosed with Fibromyalgia in the last year. They seem to take that a bit more seriously like ME isn’t enough!
    Why don’t they listen??? They make us suffer and they don’t care.

  7. This sort of tragedy is all too common, due to misguided medical advice that is based on politically-motivated, farcically flawed studies that form the basis of official treatment guidelines.

    People are dying because of being forced into inappropriate treatment.

    Science should be self-correcting, but in England, this hasn’t happened.

    The Graduated Exercise / Cognitive Behavioural Therapy (GET/CBT) faction, comprised of prominent psychiatrists and psychologists, has influence over the Science Media Centre (SMC), which promotes whatever they say.

    The psychiatrist most commonly linked to the promotion of the somatisation and de-conditioning model and GET/CBT treatment for ME, is on the SMC’s Board of Trustees:
    ‘The board of Trustees is the major decision-making body of the Science Media Centre and meets at least three times a year. Trustees are distinguished in the fields of science, engineering, medicine, journalism, communications, finance, law and policy.’

    The media, in this post-investigative journalism world, uncritically regurgitates whatever spews from the SMC.

    It’s been said that GET and CBT, as treatments for ME, are not evidence-based, but ’eminence-based’ medicine – which is an appropriate summation.

    The people behind the flawed studies that have been published in The Lancet and BMJ are respected in their profession. The man whose ideas were the source of studies such as PACE, was awarded the inaugural John Maddox Prize for Standing Up for Science. (Had anyone on the judging panel critically read the studies he was defending? It seems not.) Then he got a knighthood. Then he was made President of the Royal Society of Medicine.

    So the British medical institution is unlikely to oppose the bad science* that resulted from the ideas of the President of the Royal Society of Medicine. The potential for reputational loss to those involved in the PACE Study, or whose ideas spawned it, forms a strong motivation to resist accountability.

    Good and promising science is happening around the world – and in Britain. But the SMC doesn’t report it. It seems to prefer promoting the studies of its friends, instead.

    This is the reason David Tuller is speaking around the world. His work is vital, as lives are being ruined due to mismanagement of ME, following the misguided medical advice given, based on flawed studies – and lives are also being lost.

    Sophia Mirza lost her life due to medical intervention. The door of her parents’ home was broken down and she was taken, without her consent, to a hospital, forced to exercise, and what had been a gradual improvement at her parents’ home turned into a steady decline – to death. CFS was cited on her death certificate and changes to her spinal cord were found on autopsy.
    https://me-pedia.org/wiki/Sophia_Mirza

    Treatment guidelines following the conclusions of the PACE Study have caused damage to ME patients around the world. (Fortunately, in America, GET/CBT have been dropped as recommended treatments – but a ‘Trial by Error’ post from August 2018 states that the Mayo Clinic is still advising patients to exercise more: http://www.virology.ws/2018/08/06/trial-by-error-mayo-still-champions-get/.)

    * Bad science, I feel, is too mild a term: to have overlapping entry and outcome criteria, to not disclose conflicts of interest (links to insurance companies) to the patients and to use diagnostic criteria that were wide enough to catch people with other fatiguing conditions, such as depression, is to conduct a study designed to produce a desired result. The study was partly funded by the Department of Work and Pensions. There can only be one reason that they would want to fund a medical study and it’s too obvious to state.

  8. Rachel says:

    Many thanks to everyone who has left comments on this article. So many well-expressed and hard hitting truths, and painful personal experience in what you have written. I am Cherry’s mother and I draw strength from your solidarity.

  9. Christie says:

    This is as frightening as it is outrageous. My heart goes out to everyone who has suffered through such “treatments.” These things are continually recommended to me, too. Not by doctors as official regimens, but by ignorant laypeople, and those who frankly have some kind of deep-seated resentment of the premises underlying the common sense alternative of rest and nurturance. I am so very grateful I found this article. I’ve always known in my gut that exercise and “positive thinking” are not cures, and won’t help me. I’ve tried a little of them, but backed off fast when the problems started. I just thank God that I listened to my body, and didn’t ignore nature’s signals. Instead of GET and CBT, I will be working on honing my ability to hear my body’s messages and learning to pace according to her needs.

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