• Welcome to Phoenix Rising!

    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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

Jenny TipsforME

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
We've received a few personal stories about GET from different angles, which will be useful for publicity.

Does anyone have firsthand experience of doing GET when you were a child?

Or more tenuously missing appropriate, existing treatment because your doctor has been led to believe that GET is the appropriate treatment (most of us probably have an experience of this but I'm thinking of the doctor explicitly stating it).

You can add on http://forums.phoenixrising.me/inde...t-story-to-publicise-stopget-petitions.47081/ or email GETpetition@gmail.com.
 
M

me/cfs 27931

Guest
Messages
1,294
Jenny TipsforME said:
We've received a few personal stories about GET from different angles, which will be useful for publicity.

Does anyone have firsthand experience of doing GET when you were a child?

Or more tenuously missing appropriate, existing treatment because your doctor has been led to believe that GET is the appropriate treatment (most of us probably have an experience of this but I'm thinking of the doctor explicitly stating it).
Click to expand...
I suspect many (like me) were misdiagnosed with childhood depression. Then we are told by the psychiatrist to take drugs that don't help and exercise as we did before our illness. Of course, we crash spectacularly, with longterm health consequences.

Don't misunderstand, I agree the MAGENTA trial is a horrible thing and needs to be stopped.

But given that 8 out of 9 ME/CFS sufferers remain undiagnosed (per IOM), I also suspect misdiagnosed patients prescribed exercise vastly outnumber diagnosed patients told to do GET.

This is the elephant in the room no one talks about.
 
A

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
What is the StopGET petition and why should you care?



Sign this petition to prevent risk to children's health from an unethical research trial
Imagine you get a mysterious and highly debilitating illness. It takes away much of what you love in your life. Your doctor says there may be a treatment that can help. It’s not a drug but a behavioural reprogramming therapy developed by psychiatrists. It’s safe, she says. And proven to be effective in a study published in The Lancet.
Sounds odd, but you go ahead with the therapy with an open mind. It consists of getting you to gradually increase your activity levels and exercise. Not only does it not improve symptoms but the behavioural regime prescribed actually makes your illness worse. Your therapist is unsympathetic and says you are showing a negative attitude and that your entrenched belief system is what is keeping you ill. When you become so ill you can’t physically get to the clinic any more, your therapist berates you for not complying with the treatment, and strikes you off their clinic register.
This is what happened to me at age 19. The treatment was Graded Exercise Therapy (GET) for Mylagic Encephalomyelitis (M.E.), also known as chronic fatigue syndrome (CFS).
Click to expand...

http://limitedcapability.blogspot.co.uk/2016/09/what-is-stopget-petition-and-why-should.html
 
A

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
A

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
A

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
Jan

Jan

Senior Member
Messages
458
Location
Devon UK
I've just put this on Myalgic Encephalomyelitis Global fb page. It received 4 like in less than a minute. The group has a very large membership, but it's non political, so I do hope it remains on there.
 
A

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
slysaint

slysaint

Senior Member
Messages
2,125
AndyPR said:
UK, now at 3,335. 10,000 needed for response from Parliament
Click to expand...
What's the time limit on this?
I'm not sure how, but we need to try and spread the message more(?) Ideas?

EDIT: anyone fancy emailing the UK support groups? Contact details available on the AfME website:whistle:
 
Last edited:
You must log in or register to reply here.