Tom Kindlon · @TomKindlon
4th Jan 2013 from Twitlonger
(long tweet) Responses when @JaneCColby asked for #ME people's deteriorations post Graded Exercise Therapy (#GET).
----------------------------
A few days ago, the following was posted on Twitter:
---------
Jane Colby @JaneCColby
I once asked pple who'd deteriorated after GET to contact me. Loads did. @TomKindlon suggests we collect cases now. Tweet me your stories.
---------
Here are some responses. Feel free to send more.
Deborah Dore @Deborah_Dore
@JaneCColby Sounds familiar. I did swimming for my GET, now I can barely walk. Diagnosed with ME? Don't do GET (please retweet)
Retweeted by Tom Kindlon
Michelle @Mies10
@JaneCColby GET made me worse big time. Soon stopped #notgonnadestroymyself and started pacing...way better!
Retweeted by Tom Kindlon
chiller @chiller
@JaneCColby @TomKindlon Every time I have tried GET it triggers a relapse lasting some months, during which I'm housebound or worse.
Retweeted by Tom Kindlon
chiller @chiller
@JaneCColby @TomKindlon Had ME for 6 yrs, 4 of them badly enough that can't work. I relapse randomly w/o GET as well, but GET = guaranteed.
Retweeted by Tom Kindlon
chiller @chiller
@JaneCColby @TomKindlon Also: askng smone so sick they can't remmbr to eat/drink/pee to "keep detailed diary" = no sane definition of "help"
Fiona Craig @FionaCraig94
@JaneCColby @TomKindlon physio increased my activity beyond my means and left me housebound for 3 years on/off out of 7. Im so much worse
Fiona Craig @FionaCraig94
@JaneCColby @TomKindlon had 3 attempts at physio therapy and each time, my healths deteriorated to the point i can barely hold myself up
Fiona Craig @FionaCraig94
@JaneCColby @TomKindlon i was 13, 15 and then 17 and had no idea of the consequences or indeed them calling it GET. Never again :/
Nasim Marie Jafry @velogubbed
@JaneCColby @tomkindlon If a knight in shining armour suggests you do GET just say NO! ;)
judy hamilton @secretspartacus
@JaneCColby @TomKindlon Specialist physio I saw told me: "Every patient I've had with ME who tried it has got worse - it just doesn't work"
KatHult @KatHult
@chiller @JaneCColby @TomKindlon or asking someone who can't sit up or lift their head to go running for an hour and not whine so much...
KatHult @KatHult
@JaneCColby @TomKindlon was told to get pregn to focus on something else. Love my kids but couldn't take care of them myself. Got much worse
KatHult @KatHult
@JaneCColby @TomKindlon -> powerwalks & caring for babies made me collapse daily on the floor in front of my kids & later house-/couchbound.
KatHult @KatHult
@JaneCColby @TomKindlon -> GET triggered extreme insomnia & severe OCD & made all my ME-symtoms much worse. Still housebound 10 yrs later.
Retweeted by Tom Kindlon
KatHult @KatHult
@JaneCColby @TomKindlon -> husband & parents takes care of my kids. I'm the zombie on the couch 90% of the time. Wish I listened to my body
Jane Colby @JaneCColby
@fionar72 @TomKindlon GET is Graded Exercise Therapy. Based on theory that pple with ME have become unfit. Incremental increase in exercise.
Jane Colby @JaneCColby
@fionar72 @TomKindlon GET in its pure form doesn't allow adjustments in response to symptoms. Told to continue with programme even if worse.
Jane Colby @JaneCColby
@fionar72 @TomKindlon Some therapists give what they call GET but they allow the person to rein back if feeling worse. That's not true GET.
Alexandra Hall @alexhall75
@JaneCColby @TomKindlon I was made worse by GET but had to follow NICE guidelines to keep my job due to OHT. I lost my job anyway.
Richard Cann @RichardCann76
@JaneCColby @tomkindlon not specifically GET because it was 15 years ago, but was told to go & play sport as usual. 90% bedridden 4 six yrs.
Richard Cann @RichardCann76
@JaneCColby @tomkindlon further to my earlier tweet, 10 yrs ago a GP said that I should build up to 5 mile walks ignoring symptoms....cont
Richard Cann @RichardCann76
@JaneCColby @tomkindlon ...I refused and he told me that I was "running away from challenges in my life".
----------
#ME #NeuroME #GET