What an absolutey landmark day occurred this week. I’m still pinching myself.
GET – aka Graded Exercise Therapy is to be scrapped as a so called ‘treatment’ for MEcfs sufferers in the UK. The implications of this long awaited decision are immeasurable. Not only for current and future sufferers of MEcfs, but also for LongCovid sufferers.
Many ME charities have been lobbying NICE – The National Institute for Health and Care Excellence in the UK, for what must be years. And the breakthrough came yesterday, November 10, 2020. Their work continues, but change is happening.
I needed to see the news on paper! And will very likely frame this cutting. ⤵️
Press and News Releases
It’s brilliant to see a quote in The Times cutting below, from Caroline Kingdon of the UKMECFS Biobank. Another team working tirelessly in research. I have met Caroline, when she very kindly visited my home in 2019 to collect samples for research purposes.
Many charity and lobby group volunteers will be working extremely hard to ensure this decision is adhered to.
Here is the press release from the ME Action Network, which offers a deeper explanation. ⤵️
Invest in ME Research have this to say: ⤵️
The ME Association released this: ⤵️
GET – A Little of My Experience
My own experience of GET (& CBT) were not positive or productive. I have had MEcfs on the severe end of the scale since Summer of 2004. Official diagnosis took 15 months.
Back in 2007, my husband had to dial 999 for an ambulance and paramedics, because I couldn’t breath. This following a complex and extremely distressing meeting with area ME practitioners about why GET was not working, it was in fact making matters far worse for me. A treatment I had naively undertaken out of sheer desperation. I had requested the meeting. The only person, apart from my husband, who acknowledged the risk of me attending in person was an Occupational Therapist who pleaded with me not to go. A ‘virtual’ meeting was not offered as an option.
It was difficult
A meeting my husband was denied access to. A meeting I endured with a panel of 3 people questionning me, while I sat in my wheelchair facing them. It was wrong on so many levels. My wheelie man, right hand man and rock had the door shut on him. I had no advocacy. I spent the day shortly after that meeting in hospital on heart monitors and oxygen.
I have never recovered from GET.
I never revisited the clinic (I can’t anyway due to problems travelling) or sought them out. Why on earth would I? A GP suggested it a year or so ago. I had to seriously bite my tongue to stop the anger from spewing out. I was told back in early 2007, that I could reapply when ‘well enough’! This while my husband spoke to them by phone as I lay in bed in massive relapse. We were left high and dry. My husband having then to give up work to care for me, and support our young family. Four years of lobbying, advocacy and complaints followed. Backing from a Specialist, Specialist Unit (closed due to lack of will to fund it), Neurology, GP and Advocacy and Local News Media got us absolutely nowhere.
I won’t go into more grim details about my experience. But I think it’s clear why I’m celebrating this move in decision making. I anticipate many more stories will gradually emerge as people are released from the stigma of this treatment and can summon courage to speak out. And it has taken the announcement to give me courage too.
More News Releases
From The Guardian Newspaper ⤵️
ME Research UK published this ⤵️
FINALLY there is change. But there is still denial by those that back GET.
David Tuller DrPH expresses more about that here. The MEcfs community are so grateful for his investigative work. ⤵️
Let’s Keep Hoping
ME is gradually being released from the stigma. The condition which affects hundreds of thousands of people. 250,000 in the UK alone. ME Dismantles lives, livelihoods, friendships, marriages. So yes GET I will happily say #GETlost. Please God it stays that way.
Thank you for reading this heartfelt broadcast. I never ever in my wildest dreams thought this day would come!
While you’re here, why not check out more posts in the ME/CFS LIFE Category below.