Chapter 2 - GET

Graded Exercise Therapy is a physical therapy that involves increasing activity, and this was one of the hardest chapters of my story. 

The first time I threw myself into it. I believed it would help, and I did everything I could to help myself and my health, only it was harming me. I was given five different leg exercises and told to increase by 5 repetitions every week until 30 of each exercise every day, then I was told to add 0.5kg of weight every week to those 30 repetitions of 5 exercises. I was told to do this regardless of how I felt. I got worse and worse until lockdown made me pace (without knowing that’s what I was doing or needed to do). I didn't see that doctor again because the situation changed, but she was at one stage consulted for her opinion and said, “if she had done what she was told, she would be cured by now”. Which was a punch in the gut after I did what I was told and only got worse.

I initially became bedbound after an accident caused extreme pain and loss of movement. Intense rehab started, and I again threw myself into it, trying my absolute best, but gradually it reduced my capacity not just for movement and physical things but also for mental activity. I continued to be pushed to the point of passing out every single day in intense physio sessions. From pain, from exhaustion, from POTS and blood pressure. As a child, I had no choice; I couldn’t defend myself from it, and neither could my parents against doctors' threats. I was forced. 

This is one of the most traumatic periods of my life and still effects me. I was trying my best at making myself worse.

GET is finally not recommended. It was a long process that had many delays, causing harm to many people. The NICE guideline 2021 said do not offer it to people with ME. It found that previous evidence recommending GET was actually of low quality. 

That being said I continued to be forced to do GET/GET equivalents under different names even after the guideline changed; they just called it something different. I have heard of this happening to many people under names such as “pacing up”. In my opinion, the NICE guideline does not go far enough or offer enough protection to ME patients, which needs improvement. 

Chapter 1 - Early diagnosis

 Chapter one starts with me a month after turning 13. I get shingles and I don’t recover. I go from being an active 13-year-old, doing some sport every day and spending the rest of my time working hard at school and having fun with friends, I become someone who can hardly walk to the sofa and feels zombie-like. 

Getting a diagnosis of ME was a long process. It's always easy to think “what if” or wonder what different circumstances and events would have led to, however, I truly believe that an early diagnosis could have made so much difference. I even saw how close I was to it. 

I’d been given a post-viral fatigue syndrome diagnosis about 2 months after having shingles and I paced without knowing what pacing was. But when it continued longer and I seemed to improve before getting worse (when I stopped pacing because I thought it was better), we didn’t understand that it wasn't something new; I was experiencing different symptoms of the same thing. 

The doctor I saw at that point, who conveniently didn't want to put a label on what I was experiencing because she felt a diagnosis was harmful, encouraged and pushed the absolute opposite of pacing. I followed what she said and I got worse. 

Without a diagnosis, which I completely believe the previous doctor knew and withheld, I was later given a misdiagnosis instead of my symptoms being recognised as Very Severe ME. I was given harmful advice and treatment yet again, this will be explored more in the next chapter. 

My point is that diagnosis is needed. It’s needed for patients' clarity, for them to be able to do what’s best for themselves, and for doctors to understand what’s happening. It’s not “label collecting” to have answers about your health. 

Early diagnosis protects patients. It enables them to protect their health by pacing, which can help with symptom management but, most importantly, help avoid disease progression. It helps patients avoid harmful treatments and get at least some support (I don’t say the support they need because it’s not available. 

Patients shouldn’t have to work this out for themselves like I did with the help of my family, the internet, other patients and eventually consultants. 

 May is ME awareness month. 

For those that don’t know, I’m Katie, I’m 20 and I have had ME since I was 13. I became bedbound with ME, losing the ability to walk, stand or even sit upright at the age of 15, which I have still not regained. 

I have really struggled to decide what to write this year or what topic to choose. The sad reality is that there are just too many areas of ME that need awareness. It’s overwhelming. As is the fact it often feels like we’re talking to a void. We raise awareness and people already aware are the ones that see. 

Despite that, I want to talk about it. And I don't want to choose one area when there are so many desperate ones. So throughout this month, I’m going to a series of posts: the story of M.E.—different chapters of my journey. I hope to share some of the various areas of ME that need attention. 

This is honestly quite an ambitious plan from someone still bedbound with ME as I hbut I hope I can share at least some of what I want to (though I have a very long list of ideas that I want to share all of)! 

I hope you stick around to see what I have to say.