CAUTION: I am fairly new to this kind of advocacy so apologies that I published this before adding this caution. This blog post contains real experiences of people who have been harmed by a therapeutic intervention known as Graded Exercise Therapy and the stories could be upsetting and may trigger feelings of trauma, loss and other difficult and painful emotions. The M.E. Charities listed below have helplines available to support anyone in need. Please comment below or DM me on Twitter @Kirstiewrites if you need help and I will do my best to put you in touch with someone.
People with ME/CFS have been harmed, some severely, by Graded Exercise Therapy or GET as it is known. GET is based on the belief that people with ME have been de-conditioned by not exercising because of a long-term illness so all they need is to start increase their level of exercise to recover. In built in this are some dangerous assumptions as to whether is M.E is a psychological illness where symptoms are exaggerated, or patients, mainly but not exclusively women, are not be trusted with their own lived experience. In some places this is the same argument that is being used for Long Covid. The problem is that ME is a condition that is exacerbated by exercise so the outcome is akin to prescribing cake to a diabetic.
NICE (The National Institute for Health and Care Excellence) finally cottoned on to this with the help of clinical experts and patient feedback and today they were meant to launch new guidelines on the diagnosis and treatment of M.E. Yesterday afternoon though they decided to press pause. We don’t know why for certain but we can guess.
Those that promote GET, and have built their careers and reputations around it, are pushing back using connections in the media and in high-placed roles in royal societies and professional membership associations, and have launched an offensive against the guidelines and, by extension, people with M.E. They continue to paint us as hysterical deluded activists who have even issued threats of violence and death to those who were trying to help them. (Classic blame the victim propaganda that was unfounded, see previous post). They try and show us as a group committed to a particular outcome regardless of the facts. However the facts in this case are that the the research into the efficacy of GET has been considered to be of low value and there are many patient testimonies of how people have deteriorated after GET. Moreover each day, thanks in part to the focus of Long Covid, also a post-viral condition, more biomedical research is taking place and securing funding to explore and measure such things as the impact of inflammation, changes in blood and in cells and how multiple systems become dysfunctional post-infection.
If that all sounds unnecessarily confusing and unhelpful, let me make one thing clear:
GRADED EXERCISE THERAPY CAN HARM PEOPLE WITH M.E.
This is why it is so important for us to keep the pressure on NICE to release the promised guidelines and remove GET alongside its companion CBT, as treatments for people with M.E. There are many in the community who have been called into action following the news and I am also trying to contribute to that action as much as possible. Yesterday I put a call out on Twitter for people to share their stories of GET so I could collate them into one thread. I am not alone in this as there are other requests and campaigns going on regarding GET too. I am listing and referencing them all here:
Why stories? Why not the medical evidence, analysis from medical professionals, scientific papers? If the last few years have shown me anything it is the power of stories over facts. It is much more interesting to hear, view, read a story that evokes emotions than reel off a list of dry facts. The facts are all there if you want to look and NICE in particular have been transparent and comprehensive in showing all their sums. But those who fiercely oppose to removal of GET and CBT are well connected with a willing media who love a good story, love a bit of skewing of perspective to benefit their readership (circulation and impressions) and happily use lying by omission and glossy photos (usually of weary white young women on a sofa holding their head) to sell the story they want you to hear. Well, we have stories too. Powerful, visceral and shocking stories. I just told mine and there are at least 250,000 stories in the UK alone. So please, if you can, share your story if you have experience and/or have been harmed by GET. You can comment below, DM me and I can share your story as I have done here below, anonymously if you wish. Or share where you think it will have the most impact. This blog post is just one of many places you can speak out. The ME Charities will be happy to hear from you too. (See list below)
We must fight this outdated theory that we are causing and prolonging our own illness and amplify our voices anyway we can. Theories like health anxiety, secondary gains and fear of exercise belong back in the 19th century along with professors who espouse it.
GET stories (Thank you to all of you who have shared)
“My daughter had GET and her health deteriorated. She needed to use a wheelchair. Didn’t manage school and was unable to complete her education. Just also like to add that the physiotherapist stopped GET when she saw my daughter deteriorating and the paediatrician agreed with her decision. We kept activity charts when doing GET and the physiotherapist could see from the charts the harmful impact exercise was having on my daughter. The charts showed a clear pattern which was much easier to visualise than if we had just talked about it”
“My dear friend died an assisted death last year, having developed ME &POTS following a medical procedure, after a lifetime of chronic pain/fibromyalgia. Dr Luis Nacul was consulted on her case. He said hers was a terrible case, but there was nothing at all that could be done. The harms include a lack of biomedical research which has resulted from this guideline, influencing other countries. She didn’t want to die. #StopTheHarm #StopGET @NICEComms. The lack of knowledge, support or understanding was devastating in itself. She tried everything. She was tortured by unmanaged pain and symptoms. It was horrific. We need biomedical research. BPS have blocked it.”
“I went to Bath CFS clinic in 2016. I didn’t really know anything about ME then, I had vaguely heard that GET was bad. But the clinic didnt call it that. They called it activity management or pacing. They told me to slowly increase activity over time. Worksheets said to avoid rest during the day. Instead of rest I should do restorative activities like reading or yoga. I now know that reading and trigger PEM and are not restorative in ME. My children were then 3 and 4 so I was already doing quite a lot while being ill. The first 2 appointments I went to Bath Mineral Hospital to see the OT, but by the 3rd appointment I was too ill to get the train so I had phone appointments every few weeks. I was encouraged to keep walking my son to school even though I kept collapsing. It was one of my ‘targets’. After about a year I could hardly walk and the cognitive symptoms were much worse. I told the OT I felt worse and she just said I could do the course again from the start!”
“My daughter has lost all of her teenage years to ME. No school, no friends, no life. She could still manage school prior to treatment, but deteriorated after vigorous physiotherapy, hydrotherapy, sleep hygiene, GET, Activity Management. In the end she could barely walk or talk.”
“I was diagnosed with mild ME when I started at the ME specialist clinic in surrey. Whilst receiving GET advice by the psychologist providing (supportive not curative) CBT, I deteriorated, and before I was discharged, the psychologist upped my classification to moderate in severity. I have a letter from them saying as much, that I gave to work when I had to retire. The psychologist was actually very supportive, but did not know GET was harmful.”
“I became sick with ME aged 12 and was made worse by GET as an inpatient in hospital, forced to try and exercise and bullied to push past my limits. I was disbelieved and so were my parents, i was made out to feel my physical limitations and suffering were a result of anxiety and ‘fear of doing things’. Receiving GET and being treated so badly was one of the worst times of my life. I didn’t manage any education, was bed bound, tube fed and still use a wheelchair to this day. GET made me worse. It’s taken me until I’m now 32 to be able to tolerate being upright and have some times of a ‘normal life’ although still hugely consumed by ME.”
“I have previously written to the GMC about it. They can’t claim to not know! I was walking and working. After GET i needed a wheelchair and eventually collapsed with severe ME. I didn’t end up tube fed though was on death’s door. My story should still count. My GP records should in theory confirm most of my history. I’ve been unable to work since. NICE are playing a nasty game!!! They cannot expect sick and dying patients to have to evidence their illness at short notice!!”
“Alistair Miller: ‘CBT and GET are all we have.’ My local fatigue clinic wrote to my GP saying I ‘didn’t want to recover’ – when I’d been ill 15 yrs. My GP said she’d never had so many complaints about any clinic as that one. It was less than useless. I’d take nothing over that. The letter from clinic was sent to GP as having done cbt/get before with no improvement, I asked clinic for input with pacing only and they insisted I had to aim for recovery – when I had been mainly housebound for 15 years.”
“#MECFS #GET harmed me for decades with relapses in bed for 6 months losing me jobs/career. Age 40 I relapsed never recovered enough to work again. Read in a book age 45 that GET causes relapses I realised each one was just as I was at my fittest then crash”
“Years ago I was a part-time university student. I walked across campus. I studied. I even stayed up late some nights with friends. My ME made it incredibly hard, but I could engage with life. This all changed when I did GET. They told me, “This will help”, “This is safe”, “You may feel like this is too much, but push through. This will not harm you.” This was all so, so wrong. Every day I followed their instructions I was injuring myself. The more I attempted the less I could do. I lost my ability to walk. To study. To spend time with friends. Everything I envisioned for my future became impossible. ME didn’t destroy those dreams. GET did. I was so happy when I saw the NICE guidelines were changing. Finally, people with ME will stop being maimed. So this delay really hits hard. I am heartbroken for all the people who will lose their independence, aspirations, or lives because of this. And I am angry for them”
Added: 23rd August 2021
“I went from being able to walk and work part-time to being unable to work and needing a wheelchair because I was pushed to walk more than I could. I think GET is not delivered safely in most places, and is unsuitable for many people.
I have been under the care of NHS ME/CFS clinics for years, and my experience is that the clinicians knew less about the condition than I do, and their advice has been sloppy, inconsistent, often unsafe, often contradictory. I really haven’t found these clinics helpful. What I have found most helpful has been being under the care of a GO who treats my individual symptoms, and under a consultant who specialises in autonomic nervous system dysfunction. The ME/CFS clinics completely neglected my tachycardia, gastrointestinal, bladder problems etc.
The only improvements I have ever had have been through medications to help with pain, sensory sensitivity, postural tachycardia, stomach and bowel problems, catheters for bladder problems, and more. None of this was done through the ME/CFS clinics who didn’t even have a doctor.
I feel like I have been failed by these clinics. I went 9 years suffering with lots of symptoms, not knowing there were medications and other things that could help with them, because these things weren’t even known about or discussed in the ME/CFS clinics. That’s why I want
the new guidelines to be published now. Because I don’t want other people to go through what I did – 9 years of preventable suffering is gruelling, especially at such a young age. I had hundreds of CBT & counseling sessions – great for mental health but made no difference to my ME symptoms. Actually the exertion of attending the appointments made my ME worse. I have tried approaching exercise is all kinds of ways, gentle and otherwise. I find that I can’t increase my threshold of what I can tolerate. Medications reduce my pain and discomfort though.I just don’t think behavioural methods alone are anywhere near sufficient for managing this illness, and often they are frustrating, distressing and harmful. I’m not saying certain psychological and behavioural things can’t help with developing coping strategies, but for me they aren’t treatments, just coping strategies. I wouldn’t be here if it wasn’t for medication which makes my symptoms more tolerable. I think we need a more biomedical approach to treat symptoms themselves, and eventually underlying causes. Behavioural is so insufficient.”
If you or someone you know are dealing with M.E. or any undiagnosed symptoms of lack of energy, pain, brain fog etc and need some guidance please do reach out below or on Twitter @KirstieWrites. It can be alarming when this happens especially if you cannot express what is going on inside you. Please know that whilst it can feel isolating you are not alone. There are thousands of us, millions worldwide that understand what you are going through. And people like me can help. If you need further help or have been offered CBT or GET as part of your treatment please contact one of the charities and organisations that provide help and support you to make the right decision for your health.
Also for other fantastic resources that have captured both the harms of GET and the reaction of the NICE guidelines please check out