I don't think this quote is needed anymore but I wanted to share it because I know a lot of my followers don't know much about the dangers of exercise with ME. There is nothing wrong with being a wheelchair user. There is, however, everything wrong with being harmed by the NHS. https://twitter.com/JessicaXDiamond/status/1285540584078422016

Okay I read about the PACE trial in depth last night so I was already riled up about this and writing that tweet as tipped me over the edge. I think I'm going to do a thread. /1

I developed ME in August 2011 ( I will do a thread about my onset and journey in August, but for now I'll touch on the bits relating to exercise). When I developed ME, I was a competitive all-star cheerleader. /2

I know a lot of people, especially in the UK, see cheerleading as waving pom poms, but all-star is a highly athletic and dangerous sport akin to gymnastics and acrobatics, with a bit of dance thrown it. I was therefore very physically fit. /3

I woke up at 5/6am most days and did yoga before school. I did hours of stretch and stamina training every day after school in my own time. I was very lean with visible abs. So clearly, I wasn't deconditioned /4

Anyway, in August 2011 me and my family went on holiday to Greece. I went to sleep the first night feeling a bit weary from travel, but fine. I woke up the next day and everything had changed /5

I had a sore throat and blocked nose, basically symptoms of a mild cold. The thing that was strangest though is that my body felt like lead. I'd never experienced that sensation before, even after intense exercise. It wasn't a normal kind of heaviness. /6

I had taken my yoga mat on holiday with me and was trying to do my normal stretches but found my muscles were so much weaker all of a sudden. I attributed this to the cold symptoms, and the Greek heat /7

That holiday was very active. I swam a lot, walked a lot, carried on stretching (albeit with a lot of struggle). My activity did not decrease in response to my symptoms /8

I got home after two weeks, and the 'cold' had mainly gone, but the heaviness hadn't. I also noticed that even though my nose wasn't running anymore, it still felt stuffy, and I had an intermittent cough/sore throat. I ignored it and got on with my life. /9

I started GCSEs that September. As a diligent and ambitious student, I threw myself into my studies and did way more work than was necessary. I overworked myself and felt my depression worsen as a result /10

I also started experiencing bad pain, especially in my joints. I was investigated for RA, sent to physiotherapy, and had loads of tests. Nothing came back with any answers /11

The pain never stopped me exercising. I injured my already bad (from a previous injury) left knee in cheerleading and still walked 20km with a 20kg backpack on for DofE practice walk. This put me on crutches, but I still didn't slow down /12

By the time of the actual DofE, my pain was severe and I was on tramadol and naproxen. I had been using crutches since the practice walk. I still did approx 10km of the walk on my crutches, and was driven the rest. By the end I was sobbing and they had to force me to stop. /13

My knee healed somewhat but the pain in most of my joints never went away, especially after I was taken off the pain meds. At this point the muscle heaviness had turned to pain too /14

When the cognitive symptoms which had slowly crept up on me became a lot worse, I attributed them to my depression and decided the only way to help them was to 'push through'. /15

By the Summer of 2012, in between y10 and y11, it had got so bad that my mum had to read To Kill a Mockingbird to me in preparation for y11. TKAM is not a difficult novel to read. At this point I told my mum about my depression and we saw a doctor /16

From then on, any new symptoms I got I attributed to my mental illnesses. Swollen lymph nodes? Depression. Nausea? Well that must be anxiety (even though I'd had 5 disorders since childhood and never felt nauseous). /17

Eventually, I gave up cheerleading because of my depression, but stayed very active. To cope with my mental health I'd spend hours on the trampoline after school. I'd listen to music and just bounce for ages. /18

So as you can see, still very active. By now it was 2013 and I was finally receiving therapy for my mental health, at the Maudsley in London /19

All of my mental illnesses improved to the extent that I no longer met the criteria. I was not depressed for the first time since I was 11. Still, my symptoms got worse. My psychiatrist said that what I was experiencing was not mental or psychosomatic; it was physical /20

She was worried about how much I was declining and sent me for blood tests there and then, at the psychiatric hospital. Of course, nothing came up, but this started the process that led to my ME diagnosis. /21

That Summer (2013) I had got a gym membership and started exercising approximately 2 hours about 5 days a week. I did a lot of strength training, but noticed the stronger I got, the weaker I felt /22

I kept working out, kept cycling everywhere. In my school report in March 2014 my tutor wrote 'jess needs to be careful not to work too hard or she's going to overdo it'. I wish I'd listened to him /23

By November 2014, I was diagnosed with ME by the Bristol 'specialist' service. They told me the way to get better was CBT and graded exercise. Since I had just finished a course of CBT and was about to start MBCT, they just gave me 'support sessions'. /24

This consisted of people sitting in a circle and crying about how shit it all was, and the staff telling us we could get better but not actually telling us how, other than 'graded activity' /25

I was told to slowly increase my level of activity/exercise. At this point I could no longer manage 2 hours a day as it made me so ill, but I was doing about an hour of exercise I day. I tried to increase from this. My body couldn't take it /26

I became bedbound, dropped out of school, and was unable to do anything other than watch TV. I started using a walking stick. I get pushing, getting out of bed when I shouldn't have, going out with my stick and even modelling at one point /27

TW suicide

The more I pushed, the worse my symptoms got. In May 2015 I tried to kill myself after being told I didn't qualify for disability benefits. /28

In June 2015 my family went on holiday to Cyprus. It was a chill holiday but by this point I was heat intolerant, and had to walk a lot. In the airport on the way home I collapsed and couldn't get up. I had to be rushed through the security queue in a wheelchair /29

This is when I realised how much a wheelchair could change my life. I became a wheelchair user in August that year /30

After I became a wheelchair user, my functioning improved. I stopped collapsing all the time, I could do things and see people again because I didn't have to walk. I had a life /31

Still, I had this voice in the back of my head and coming from well meaning people warning me about de conditioning. I got a gym membership again. I kept pushing and pushing, my health getting worse all the time /32

At this point I had done a lot of research and new that exercise actually damaged ME patients. I couldn't come to terms with it because I missed exercise so much. I knew it made sense because of the PEM/PENE I got from exercise, but I didn't want to accept it /33

I ignored my body and the biomedical evidence, and kept exercising when I physically could (which was not a lot). I did this up until June 2019 at which point I accepted that it was true that ME causes exertion intolerance and started actually listening to my body /34

What my body told me was a story of sorrow and pain. I had abused it and pushed it for years, sometimes despite knowing better, because the biopsychosocial model and people who believe it let me think that it was okay. It wasn't okay /34

I am now severely disabled. I can't work, cook, clean, do most of my hobbies, read much, do my voluntary jobs. I collapse regularly, my pain is unbearable, and I have several comorbidities. /35

I wouldn't have got better either way, but I know in my heart and in my brain that the reason I'm so ill is because of pushing for so many years. I was encouraged to push by doctors and friends. I can't push anymore. I'm broken beyond repair. /36

My life is now filled with little more than pain and suffering. I can't do the things I love, I can't help others how I used to. I'm a waste of a life and of air. All because I was told to harm myself by the people who should've protected me /37

PLEASE NEVER tell an ME patient to exercise. You could inadvertently ruin a life. /38

I know this thread is long. I missed out LOADS to try and keep it short. There's so much more. But hopefully you understand that I didn't choose to stop exercising, I was never deconditioned until I became bedbound from exercising. The BPS model is a harmful pile of shit /39

There is so much more to say but now I'm sobbing. Pls believe me that I want to exercise. Pls believe me that I can't. I cannot take any more misinformation and stigma. I am going to die from this illness one way or another. Pls listen to PwME so this doesn't happen to others./40