Why I’m Giving Up My Trainers #millionsmissing

Tanya trainersThere 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. Because of my ME, my mobility slowly worsening each year, I haven’t been able to run for almost nine years, but I’ve kept them, dragged them from house to house. I couldn’t bring myself to throw them away.
 
Sometimes I dream I am running again.
 
***
 
In the early days of my mobility being affected, I thought it would be temporary. So many well-meaning people told me that ‘everyone gets better from ME’, and gave me some suggestions of lightning-quick therapies that would soon restore me to normal.
 
Over the years, I’ve discovered that I’m not the only one to remain stubbornly un-cured. The most severely affected aren’t seen – sometimes even by doctors. In the early days, I was told that if I exercised gradually and steadily, ignoring any symptoms, the exercise would cure me.
 
That’s what I believed when I bought the trainers. I was running my way back to health. I felt stronger each time. My body was pumped full of endorphins. It was the key to my healing, and I committed to it wholeheartedly, partly because I loved it, and partly because a doctor had told me it would work.
 
I wanted it to heal me. Instead, the exercise broke me.
 
I’m not the only one who was made worse by exercise. The ME Association reports 74% of ME patients prescribed Graded Exercise Therapy by the NHS are made worse by it. In my case, I was made permanently disabled by it.
 
In the UK, the NICE guidelines still prescribe Graded Exercise as the ‘best’ therapy for ME patients. There are no warnings about the dangers of Graded Exercise Therapy. Despite recent studies showing how exercise can physiologically damage some ME patients, these guidelines remain unchanged.
 
***
 
Trainers 2

 

The years go by, and life for ME sufferers is still difficult: there’s little or no ongoing specialist medical support, and very sick patients are left to fend for themselves; patients are regularly turned down for benefits, denied access for house visits by doctors, accused of school phobia or truancy by teachers, because so many medics don’t believe that ME is an organic disease, and confuse it with stress-related exhaustion. Graded Exercise Therapy continues to be prescribed; a high percentage of ME patients continue to be damaged.
 
This year, on the 25th May, worldwide, ME patients are hosting a ‘virtual protest’. Since so many of us who care about this are too ill to protest in person, we are sending our shoes, which will be placed outside in Washington, London and other locations as a visible sign of the millions missing.
 
As soon as I heard about it, I thought about my trainers. They are the shoes that represent to me so much of what I am missing from my old life – running, independence, freedom – and they also represent the failed ‘cure’ of exercise. They gave me life; they damaged me beyond repair.
 
Even as I put the trainers aside for packaging, I felt a reluctance to let them go. I remember that day in the shop, trying them on for the first time. They were so bouncy, and I had felt so excited.
 
***
 
I am Tanya Marlow, sick with ME for twenty years, housebound for the last six, one of the millions missing. Because of ME, I miss playing with my son at the park, singing opera arias properly; I miss the freedom of going round to friends’ houses for meals or coffee, I miss walking hand in hand with my husband; I miss my ministry in church.
 
I miss running.
 
Trainers 3
 
How you can help:

  • Protest with on 25th May if you are available (see locations). There’s also a virtual protest option if you can’t be there in person.
  • Lobby your MP for better biomedical (not psychiatric) research into ME, and to change the NICE guidelines, which still advocate Graded Exercise for ME patients, and give no warning of its dangers.
  • Give to ME research – there are several promising leads for treatment (including antivirals and a cancer drug, a Rituximab) but they need millions of investment – and there are very few donating to ME research because it’s not seen as a priority by either the public or the government.

 
My favourite ME charities are:

  • ME Research UK (doing some brilliant studies especially with Dr Julia Newton – probably my favourite research charity)
  • Invest in ME (focusing on the role of the immune system, and including Rituximab trials – UK)
  • The End ME/CFS Project – Open Medicine Foundation. US Charity – I trust Ronald Davis, world-renowned geneticist, to lead this research in promising directions.
  • TYMES Trust (helping young people and children with ME – especially in cases where parents are falsely accused of child abuse because it is assumed that ME can’t be that severe)
  • Change for ME (UK ME Action and campaign)
  • ME Action.net (Worldwide ME action and campaigning charity)
  • ME Association (providing support and advice for UK ME patients)

 
For more information on ME click here. For more information on the problems of Graded Exercise Therapy, click here.
 
Thank you.

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18 Responses to Why I’m Giving Up My Trainers #millionsmissing

  1. Vee 25th May, 2016 at 4:05 pm #

    Hi Tanya,

    I’ve followed your blog for a couple of years now and always look forward to reading your thoughts and experiences and Godly wisdom. I got sick after going on mission to Tanzania with my church 4 years ago and am now housebound caring for my little boy who is 19 months.

    I am wondering if you’ve heard of Dr Caroline Leaf and her thought detox programme using thanks giving, praise, worship and seeking God each day to help us to replace the negative thoughts about sickness with Gods truths, that he loves us ands he’s for us and he will never leave us. I use one of her replacement thoughts when I am worrying which I do a lot and say to myself:

    ‘I don’t need to worry, that’s causing inflammation in my brain making me worse, I trust in God with all my heart, all my mind and all my soul’.

    Its hard isn’t it to keep on being positive with all we ME sufferers are bombarded with every day, physically, mentally and emotionally. I am grateful I can come here and walk this narrow path with you. I felt relief when you shared that maybe you don’t have enough Jesus yet as I chastise myself for not believing hard enough and its my fault I’m like this. Thank you again.

  2. Jo 25th May, 2016 at 3:10 pm #

    A beautifully touching piece of writing written by a beautiful lady. I can’t imagine what you are going through but the world of ME sufferers has a wonderful spokeswoman for their cause, one who writes from the heart and is willing to make herself vulnerable in order to encourage and help others. Bless you, Tanya

  3. Faith Hope and reality 25th May, 2016 at 2:13 pm #

    So much love x

  4. Claire 25th May, 2016 at 9:46 am #

    🙁 with you. My 15 yr old son has suffered for the past 4 years having previously been s really really active outgoing sociable boy. The dramatic downturn in his life is staggering snd the silence when looking for any meaningful support deAfening,

    • Vee 13th July, 2016 at 5:51 pm #

      Hi Claire, have you read ‘What is wrong with ME?’ THE ILLNESS AND THE CONTROVERSY by Merryn Fergusson. Its a mothers account of her teenage sons battle with ME. Thought I would share it with you. God bless, Vee

  5. Maureen 25th May, 2016 at 8:03 am #

    So with you on this one.In 2005 after having moderate ME since 1991 I was persuaded by a family member to try GET,which she offered to pay for me to see someone privately as that way I could get appts when it suited me etc….as this person had done nothing for me from my diagnosis,the offer of paying for private GET somehow lured me(haven’t we all been so desperate to get well,you lose your true sense of judgement?)Well,you know what I’m going to tell you…..yes I was told to push through etc….and 3months later I became totally bedbound….the therapist was still phoning me to say that I should continue and get well!!!!It took me almost a year to become and still remain “housebound”…..this GET and CBT dangerous regime must stop a.s.a.p.!!!!!

  6. Melissa 24th May, 2016 at 10:15 pm #

    I have a 12 year old with ME/CFS and he’s had it nearly 3 years. One of his teachers was amazing, another accused him of school refusal!!! Learning how to plan things has been helpful for us, however it’s still hard for a 12 year old to be missing out on being a kid.

  7. Jamie Sugg 24th May, 2016 at 8:46 pm #

    Couldn’t agree more. I’m also one of those affected by GET – naively believing the physio that I would be back working full-time within 12 weeks. After 23 weeks of GET my funding was stopped, I was left to fend for myself trying to work part-time, travelling 40 miles per day. 5 months later I was ill health dismissed. GET left me bed-bound, barely able to walk, yet I was asked ‘do I really want to get better?’ and ‘should we re-adjust the goalposts?’. I was made to feel it was my fault!!! Terrible treatment, but I’m counted as someone who completed GET and was able to work yet I couldn’t without giving up everything else in my life. A year later, I go out once a week with the family, nothing too strenuous, need lot’s of rest, and have a walking stick to hand all the time. My life is planned at every step – I’m trying to work from home as a self-employed artist but I can’t even fully enjoy it because it’s so hard sometimes to even pick up a brush. The damage to my muscles and joints means I am in pain every night, and standing for just 15 minutes on bad days is too much. Yet the month when I first became ill with ME I walked 7 miles in a day without any problems. I hope and pray that ME sufferers will one day receive the justice they deserve.

  8. Rebecka 24th May, 2016 at 8:39 pm #

    I’m not sure what to write… Thank you for this post!

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