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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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#MEAction petition: Stop GET trials, stop MAGENTA ("PACE for children") ***UK deadline 12th March***

Messages
2,125
Just found this very emotional account about Lynn Gilderdale that I hadn't read before from 2006.
"
For years many doctors dismissed ME, also known as Chronic Fatigue Syndrome, as 'yuppie flu'. But last month a coroner gave ME as the official cause of death for the first time in the UK - raising hope among campaigners that the condition is about to be taken seriously at last.

Here, Kay Gilderdale tells Gill Swain the heartrending story of her daughter, Lynn, 28, who was struck down by the illness 14 years ago..."

http://www.hetalternatief.org/Lynn Gilderdale 2006 189.htm

If anyone wants to know why we are so 'militant', get them to read this.
 
Messages
13,774
They did say this:

Patients with CFS may generally benefit and feel less fatigued following exercise therapy, and no evidence suggests that exercise therapy may worsen outcomes.

And this was in a summary:

Exercise therapy did not worsen symptoms for people with CFS. Serious side effects were rare in all groups, but limited information makes it difficult to draw firm conclusions about the safety of exercise therapy.

To me it looks like they deliberately gave bold quotes to be taken out of context.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
We are doing a thing for ME Awareness month Missing More After Graded Exercise Therapy (#MissingMoreGET)

The idea is to tie in a bit with Millions Missing: Some people are missing more of normal life unnecessarily because they were given bad advice to do graded exercise (or assumed exercise was good and weren't advised to be careful).

We're going to post blog posts from www.stopGET.org and have them scheduled throughout May.

Instructions if you want to write something new for it are here:
View image on Twitter
C-BinCVXgAMNAyY.jpg:small


Follow
#stopGET Campaign @stopGETteam

#MissingMoreGET
Share your story of graded exercise therapy for #MEawarenessmonth see http://www.stopget.org/2017/04/missing-more-after-graded-exercise-therapy/ … #pwme#MillionsMissing

http://www.stopget.org/2017/04/missing-more-after-graded-exercise-therapy/

We can also reblog relevant blog posts you've already written.

Input welcome from anywhere in the world and all ages, especially examples of child GET.