Thread by @KirstieWrites

If you or someone else has been harmed by GET please share on here. This is from someone on FB.

"My daughter had GET and her health deteriorated. She needed to use a wheelchair. Didn’t manage school and was unable to complete her education."

#GETstories
#GETharms

#MECFS

Story above continues: "just also like to add that the physiotherapist stopped GET when she saw my daughter deteriorating and the paediatrician agreed with her decision.

#GETstories
#GETharms
#MECFS

We kept activity charts when doing GET and the physiotherapist could see from the charts the harmful impact exercise was having on my daughter. The charts showed a clear pattern which was much easier to visualise than if we had just talked about it"

#GETstories
#GETharms
#MECFS

New story from FB
"I was diagnosed with mild ME when I started at the ME specialist clinic in surrey. Whilst receiving GET advice by the psychologist providing (supportive not curative) CBT, I deteriorated, and before I was discharged, the psychologist upped my classification

to moderate in severity. I have a letter from them saying as much, that I gave to work when I had to retire.
The psychologist was actually very supportive, but did not know GET was harmful."

#GETstories
#GETharms
#StopGET
#MECFS

Next story:
I became sick with ME aged 12 and was made worse by GET as an inpatient in hospital, forced to try and exercise and bullied to push past my limits. I was disbelieved and so were my parents, i was made out to feel my physical limitations and suffering were a result of

anxiety and ‘fear of doing things’. Receiving GET and being treated so badly was one of the worst times of my life. I didn’t manage any education, was bed bound, tube fed and still use a wheelchair to this day. GET made me worse.

It’s taken me until I’m now 32 to be able to tolerate being upright and have some times of a ‘normal life’ although still hugely consumed by ME.

#GETstories
#GETharms
#StopGET

Next story:
“I have previously written to the GMC about it. They can’t claim to not know!
I was walking and working. After GET i needed a wheelchair and eventually collapsed with severe ME. I didn’t end up tube fed though was on death’s door. My story should still count.

My GP records should in theory confirm most of my history. I’ve been unable to work since.
NICE are playing a nasty game!!! They cannot expect sick and dying patients to have to evidence their illness at short notice!!”

#GETstories
#GETharms
#StopGET
#MECFS

https://twitter.com/KTKINGbooks/status/1427920618486382600?s=20

Just been advised that Dr Myhill is running a campaign compiling stories too.
Adding #MAIMES into this thread

https://twitter.com/SbrCraftmylife/status/1427914336488525828?s=20

Such bad advice. Takes no account of PEM which can flare up days sometime at least a week after exertion by then continuous exercise would cause harm.

Language used plays down the symptoms

Prioritising aerobic exercise over other responsibilities is condescending

And there is no disease you have a right to health is the ultimate gaslighting. Reminds me a fresher's week hypnotist...

https://twitter.com/GhostSpiral1/status/1427960692263505926?s=19

#GETstories
#GETharms
#StopGET
#MAIMES

https://twitter.com/agirlandme/status/1427796399777845251?s=19

#GETstories
#GETharms
#StopGET
#MAIMES
#MECFS

@threadreaderapp unroll please

Blog post about the NICE debacle and all stories collated so far here

crystallisingdream.wordpress.com/2021/08/18/get…

New story
"I had my get delivered over telephone calls with an occupation therapist from the me clinic. He kept going on at me and the only thing I remember saying to him that my baseline was so low that I could not do anything.

I think the main thing wrong with get is that they don’t account for the fact that just getting out of bed uses energy, going to the toilet. Most days I cannot even have a bath as I am so fatigued and in pain (I do have osteoarthritis too). Or even get a was or brush my teeth.

And get does not even think of this. Pacing and the spoon theory at least recognises we use energy by opening our eyes, by listening to a conversation and that some days we have no spoons.

My condition has got worse over the last few years and even my current counsellor says it’s like I am in a constant flare everyday as brushing my teeth can use more energy than I actually have. I think the only way something will be done is if some legal action can be taken"

https://twitter.com/HealthHubris/status/1428299656451215361?s=19

A collection of anonymised stories of GET/exercise therapy previously collected here 👇

Thank you @HealthHubris

https://twitter.com/DressFor_ME/status/1427760231480795138?s=19

#GETstories
#GETharms
#StopGET
#MAIMES

https://twitter.com/johnthejack/status/1428307836514316289?s=19

#GETStories
#GETharms
#StopGET
#MAIMES

This is a global issue! This story from a mother in Singapore

"An immunologist diagnosed my then 10 year-old daughter with CFS last year. The doctor then went on to prescribe treatments such as nasal irrigation and GET.

She made an exercise plan for my daughter.

Every time my daughter walked for even 5 minutes, her HR would go through the roof and she would feel nauseous and dizzy. It would then take her 3 days of bed rest to recover from her feeling of extreme discomfort, headaches and fatigue.

When I told the doctor that my daughter was getting worse with the exercise, she doubled down and kept insisting that my daughter walk to and fro from the bus stop. My daughter almost collapsed one time and I had to carry her back up the slope to our place.

After that incident, I stopped the GET and told the doctor I would not be doing that to my daughter again. The doctor got very defensive and refused to give my daughter medical leave from school, saying that in her opinion children with CFS were completely fit for school,

despite her daily fevers and excruciating headaches. The doctor also said that she was the only doctor in the whole country who could cure CFS.

That is when i took my daughter and walked out from her office.

The description of lunatic, narcissistic, psychopathic, fringe medical professional described her to a T."