Missing More: reduced to fingers and hands

Missing More: reduced to fingers and hands

This month we have been sharing patient and carer stories about Myalgic Encephalomyelitis (ME) and exercise. It is upsetting to hear how the current national clinical guidelines for Graded Exercise Therapy (GET) have caused reduction in function, rather than improvement. In some cases patients are left in such extreme situations it is emotionally shocking to read. Once people with ME become severely affected there isn't an antidote available to counteract this. This is Lee and Rebecca's story: My wife Rebecca had been ill for ages. She did not find out what was physically wrong until she had our son and he turned one. Everything was put down to mental illnesses. Even when she could not get of bed, suffered paralysis, had intense headaches everyday, began vomiting everyday and having the runs every day, caught everything going around and then taking ages to shake it off. Even though a cold would always lead to sinus infection that turned into a stomach infection...
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Missing More: GET made my world smaller

Missing More: GET made my world smaller

With Myalgic Encephalomyelitis (ME) our world usually gets smaller. We can no longer go to the places we used to go to. We are missing from most aspects of normal life. In the UK many of us have found that treatment recommended in the official clinical guidelines shrinks our world further, instead of increasing opportunities. Val's story is one of those personal experiences: In my 20s I raced a single person sailing dinghy, in my 30s I had 2 children, and competed in cross-country running, in my 40s I trained in karate to brown belt level, in my 50s I took up dancing: I'm no lazybones! After becoming ill on holiday, it took a year to be diagnosed with ME by a sympathetic GP, as she tested me thoroughly for all sorts, and, following the guidelines, she sent me for CBT and graded exercise therapy. I bear her no malice; she knew no better. From the outset, I felt I was treated by...
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Missing More: exercise to keep job

Missing More: exercise to keep job

Brett’s experience from Australia illustrates the global impact of UK graded exercise therapy and related research. It also shows the immense pressure that people with ME are under to comply with exercise regimes: When I first was diagnosed with ME, I was told that the illness was psychosomatic and that I had convinced myself that I was ill when there was nothing physically wrong with me (known as “false illness beliefs”). It should be obvious to most people (with the exception of psychiatrists perhaps) that this is pseudo-scientific nonsense. The only “cure” recommended by medical bodies worldwide was behavioural therapy and exercise. Undergoing psychiatric therapy to ignore my symptoms seemed stupid and illogical, but I decided to try to exercise. After all, what harm could exercise do? It’s unambiguously good for you, right? Moreover, it was made clear to me by the doctors I was referred to by my employer that I had to comply with their directive to increase my activity levels...
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Missing More: subjecting myself to graded exercise

Missing More: subjecting myself to graded exercise

Although formal graded exercise therapy originates from the UK, the BioPsychoSocial movement idea that exercise is good for ME has spread all over the world. Here Jaime S. in the US shares her story of how she subjected herself to graded exercise and what the repercussions were. I stopped work because of neurological issues: not being able to remember words, my legs giving out, my face tingling and getting numb. My job had been an active one, in which I rarely did dramatic physical labor, but also rarely ever sat down. My previous existence had been one of constant, gentle movement. I thought to myself that exercising was the right way to go if I was to no longer be at work; but I'd already noticed that activity didn't just wind me, but seemed to make all my symptoms slightly worse. Therefore, I decided to be gentle with myself and begin slowly. I bought a yoga CD -- constant, gentle movement -- and...
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Missing More: the exercise broke me

Missing More: the exercise broke me

Missing More is a series of posts which are linked to today's #MillionsMissing demonstrations. The theme is that many of the millions missing normal life (due to Myalgic Encephalomyelitis) are missing more unnecessarily after bad advice about exercise. Here Tanya explains the poignancy of giving up her trainers and the false hope that exercise for ME offered. Why I’m Giving Up My Trainers #millionsmissing There was a shop that every local runner talked about, where they were renowned for choosing the exact trainers to suit your feet. They wouldn’t show you the prices before you tried them on, because they wanted you to decide based on the best feel before you knew the price. They were the Ollivander Wand Shop of running shoe shops. The ones I chose weren’t the most beautiful in the shop, but they were the bounciest, happiest shoes my feet had ever known. Just putting them on made me want to go for a run. It’s ten years since I bought those shoes....
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Missing More: listen to your heart

Missing More: listen to your heart

Missing More is a series of posts sharing patient experiences of ME and exercise. If you would like to contribute your story, see this post. Almost everyone who has ME experiences worse symptoms standing up, even before we attempt to exercise. About a third of us suffer from a comorbid condition called Postural (Orthostatic) Tachycardia Syndrome (POTS), although this is often undiagnosed and untreated. It produces heart rate abnormalities which are objective and measurable. Unfortunately these two conditions often create a vicious cycle. Exercise can improve POTS but usually worsens ME. Here Adrian* shares personal experience of the difference between the deterioration experienced after  ignoring heart rate during graded exercise therapy and the benefits of using an alternative, heart rate based form of activity management. GET - it didn’t work for me I was given a heart rate monitor after being ill with ME for 6 months, a physiotherapist had me do a metabolic/CardioPulmonary Exercise Test/expired gases test, which confirmed that I was severely physically...
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Missing More: second day blackout

Missing More: second day blackout

Missing More is a series of posts sharing patient experiences of ME and exercise. If you would like to contribute your story, see this post. The main defining feature of ME is a delayed reaction to exertion. This can include dramatic worsening of symptoms and is not the same as just being tired. Mary Schweitzer describes her experience of attempting to do simple exercise two days in a row: I live in the US. I was never prescribed graded exercise therapy but I had an experience with an occupational therapist that is germane. I was mostly bedridden when I went on the experimental drug Ampligen in Feb 1999, and I did well on it (plus my immune biomarkers returned to normal and my viruses - some of which were active in my spinal fluid - became dormant. I thought I was cured and went off the drug in October 2000. I was doing well but was not 100% of my old self -...
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Missing More: refusing GET harm

Missing More: refusing GET harm

Missing More after graded exercise therapy is a series of posts from the perspective of people with ME for ME Awareness Month (May). If you have a story to share about exercise and ME see this post for instructions about how to contribute. Graded Exercise Therapy (GET) is one of the two main ‘treatments’ for ME in the UK, under current clinical guidelines. Many people with ME are aware of the problems with exercise and ME and are reluctant to risk getting worse. A concern many of us have is about what happens when you refuse the official therapy, especially if you refuse on behalf of a child. Here Ann* shares her experience of trying to resist graded exercise therapy on behalf of her daughter Sara*: My profoundly ill daughter Sara, was in hospital, bedridden unable to tolerate light, noise, most foods, the presence of people in her room, unable to talk without severely impacting on her health. She was deteriorating before...
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Missing More: pain is not gain

Missing More: pain is not gain

Missing More after graded exercise therapy is a series of posts from the perspective of people with ME, for ME Awareness Month (May). It ties-in with the #MillionsMissing campaign: many people are missing more of normal life unnecessarily because they were given bad advice to exercise with ME. If you have a story to share about exercise and ME see this post for instructions about how to contribute. Medical advice is often unequivocally positive about exercise being good for our health. Popular thinking suggests that there is "no pain, no gain". Unfortunately this is bad advice if you have ME and many of us have had to learn a very harsh lesson. This is Kathryn's story: I was always led to believe, by my doctors and consultants, that exercise would prevent my ME/CFS from getting worse. I also used movement to try and help alleviate pain. I wish I knew then what I know now! Exercises I was given in graded exercise therapy: - holding...
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Missing More – GET unsuitable for Fitness Instructor

Missing More – GET unsuitable for Fitness Instructor

Missing More after graded exercise therapy is a series of posts from the perspective of people with ME for ME Awareness Month (May). If you have a story to share about exercise and ME see this post for instructions about how to contribute. All types of people get ME, including qualified fitness instructors who enjoy exercise. Emma explains how despite her background she was unable to complete a graded exercise therapy plan: With all the recent hype around the disputed PACE trial [a £5m CFS/ME activity management trial which is regarded as bad science], I felt inspired to post an article on my views on graded exercise therapy (GET) – both as a fully qualified Level 3 Fitness Instructor/Personal Trainer, and as someone who has lived with ME for nearly 4 years. In my opinion, graded exercise therapy does not work for most people with ME, and worse still it can be damaging to their health. Before ME I was a very active person...
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