Sunday, December 30, 2012

Specificity about bad reactions to GET

I sometimes come across people who have difficulty believing anyone
has ever suffered significant or long-term problems from a Graded
Activity Therapy (GAT) or Graded Exercise Therapy (GET) program.

And, indeed, although surveys mention numbers, they have generally not
included extra individual details. I think more examples need to be
recorded.

I included a few in:
----------
Kindlon T. Reporting of Harms Associated with Graded Exercise Therapy
and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome. Bulletin of the IACFS/ME. 2011;19(2):59-111.
Free at: http://bit.ly/T3suWA i.e.
http://iacfsme.org/BULLETINFALL2011/Fall2011KindlonHarmsPaperABSTRACT/tabid/501/Default.aspx
(and could have included some more from the same source)
----------

Here are a few Jane Colby @JaneCColby posted on Twitter on Dec 27,
2012. Jane has been running the UK-based charity, The Young ME
Sufferers Trust (Tymes Trust) for over a decade:

- "Consultant paediatrician referred 2 severely ill kids to 'expert'
who set graded activity program. Children so ill he said it was a
mistake."

- "A doctor in the North prescribed GET for a girl who became so weak
she had to be tube-fed for many years. He apologised. #CFSME#neuroME"

- "A doctor (now retired) used an exercise bike for a child with ME.
He apologised when, to his consternation, she became very ill as a
result." (third one needs more details)

Tom (@TomKindlon)
 
* * *
I can add my own.  Several years ago, I was feeling enough better to take on the doctor's challenge to take a walk every day.  Each day, I walked the same distance, from my house to the nearby Safeway, picked up something for lunch, and walked home.  Each day, I collapsed for even longer after this short walk, until the end of the first week when I couldn't get out of bed without crumpling to the floor. 
 
Since the doctor had not been inclined to believe my assertions based on experience that exercise makes me worse, this time I took very good contemporaneous notes of how long I had to rest before I could get to the kitchen to eat what I'd bought for lunch, which symptoms got worse, etc., to prove that I wasn't mis-remembering, exaggerating based on mistaken memory, etc.
 
 

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