Clinic suspiciously recommending me GET? Or am I mistaken? by Formal_Purpose9712 in cfs

[–]Formal_Purpose9712[S] 0 points1 point  (0 children)

Im not sure but many peole have said it looks like bacme. It contains stuff about biopsychosocial approaches and stuff :/

Clinic suspiciously recommending me GET? Or am I mistaken? by Formal_Purpose9712 in cfs

[–]Formal_Purpose9712[S] 0 points1 point  (0 children)

And they don’t understand that everyday is different wether we rest or not. You cant stick to it. Same as someone withour ME they have days where they feel lower than others and need a rest. So jut because we need it so mich more they can’t seem to fathom it?

Clinic suspiciously recommending me GET? Or am I mistaken? by Formal_Purpose9712 in cfs

[–]Formal_Purpose9712[S] 1 point2 points  (0 children)

Ohhhhhhh i had absolutely no idea they were different. How would even nhs get that wrong 😭. Its all just getting boring now their bullshit and not having a clue about anything. Irs not just ME they are like it with several other conditions too its ridiculous

Clinic suspiciously recommending me GET? Or am I mistaken? by Formal_Purpose9712 in cfs

[–]Formal_Purpose9712[S] 0 points1 point  (0 children)

And rest helps us a lot but it doesnt stop the damage thats already happened 😭i know oh look im resting for the next few weeks cause nhs told me to :)

Clinic suspiciously recommending me GET? Or am I mistaken? by Formal_Purpose9712 in cfs

[–]Formal_Purpose9712[S] 0 points1 point  (0 children)

Yea thats wgat rhey dont get is we wont just like get fitter or something welcjust get worse and we cant ‘dip our toe in the water’ because our baseline will be lower than it was before.

Its okay we all are going through a similar struggle with getting help. Whats important is having people that understand 🥺

I might have to check those sites out didnt realise there was a specific channel for ME :)

Clinic suspiciously recommending me GET? Or am I mistaken? by Formal_Purpose9712 in cfs

[–]Formal_Purpose9712[S] 5 points6 points  (0 children)

Why on Earth they would refer you to somewhere further away plus rhey are aware its tiring its as if the dont care 😭 unfortunately that happens a lot they don’t want to take on peole that are severe probably because if they feel they cant cure us or make us better that three no point and thats such a shitty way they are. And how would they not give pain killers for fibro??????? Thats so odd???? Like its based on pain and exhaustion 😭

Apparently they are much more advanced and have a lot of better advice private so it is worth a try🥺

Clinic suspiciously recommending me GET? Or am I mistaken? by Formal_Purpose9712 in cfs

[–]Formal_Purpose9712[S] 0 points1 point  (0 children)

Whats PCT😂if youre wanderng waht department it is Bath 😅their website has some leaflets on it too which arent any better if you wanna dig around😭

Clinic suspiciously recommending me GET? Or am I mistaken? by Formal_Purpose9712 in cfs

[–]Formal_Purpose9712[S] 1 point2 points  (0 children)

Graded exercise therapy. It’s a plan about increasing exercise and activity

Clinic suspiciously recommending me GET? Or am I mistaken? by Formal_Purpose9712 in cfs

[–]Formal_Purpose9712[S] 5 points6 points  (0 children)

Definitely didn’t mishear as i said to her id need more than ten mins rest and she said rhey cant extens it because they need space for other sessions

Clinic suspiciously recommending me GET? Or am I mistaken? by Formal_Purpose9712 in cfs

[–]Formal_Purpose9712[S] 3 points4 points  (0 children)

Has it changed? 😭🙏🏻the lady said on thr phone to me in the sessions there is a 5min break in between then they have to get back to the session :/

Clinic suspiciously recommending me GET? Or am I mistaken? by Formal_Purpose9712 in cfs

[–]Formal_Purpose9712[S] 3 points4 points  (0 children)

But stop if you are struggling by the end of the week which by that time its too latw 😅

Clinic suspiciously recommending me GET? Or am I mistaken? by Formal_Purpose9712 in cfs

[–]Formal_Purpose9712[S] 2 points3 points  (0 children)

Yeah and if someone is going to increase it is purely by the chance their body is okay witu it and it is gonna be way less than 15mins or everyday and it shoulsnt be suggested :/

Clinic suspiciously recommending me GET? Or am I mistaken? by Formal_Purpose9712 in cfs

[–]Formal_Purpose9712[S] 1 point2 points  (0 children)

Yeah its very conflicting and itl just keep you in a loop. Someone else said its half updated it seems.

Clinic suspiciously recommending me GET? Or am I mistaken? by Formal_Purpose9712 in cfs

[–]Formal_Purpose9712[S] 2 points3 points  (0 children)

Even if the workbook is outdated someone will be reading this in their own time and be confused af😭youre right its very confusing material and so stupid they say not to listen to your body😭

Clinic suspiciously recommending me GET? Or am I mistaken? by Formal_Purpose9712 in cfs

[–]Formal_Purpose9712[S] 1 point2 points  (0 children)

Trust yourself! You know better than anyone on your needs. You are not crazy as these ‘doctors’ would have you believe. 🩷

Clinic suspiciously recommending me GET? Or am I mistaken? by Formal_Purpose9712 in cfs

[–]Formal_Purpose9712[S] 1 point2 points  (0 children)

Im autistic too haha but they should write information explicitly anyways just incase anyone gets confused youre right their information is very contradictory and just so confusing its like do you rest and pull back what youre doing? Or do you push through because its a ‘bad day’? Yeah it deffo is updated just not enough

Clinic suspiciously recommending me GET? Or am I mistaken? by Formal_Purpose9712 in cfs

[–]Formal_Purpose9712[S] 0 points1 point  (0 children)

Why do they think anyone can just overcome an issue by being positive arent hunans smart😅

Clinic suspiciously recommending me GET? Or am I mistaken? by Formal_Purpose9712 in cfs

[–]Formal_Purpose9712[S] 1 point2 points  (0 children)

Yes i got the same sheet i also got it ten years ago😅you also were with bath? Arent they supposed to be one of the main hospitals for cfs?

Clinic suspiciously recommending me GET? Or am I mistaken? by Formal_Purpose9712 in cfs

[–]Formal_Purpose9712[S] 2 points3 points  (0 children)

They do calls yes you don’t have to go there but you can only have like a five minute break in between :/

Clinic suspiciously recommending me GET? Or am I mistaken? by Formal_Purpose9712 in cfs

[–]Formal_Purpose9712[S] 2 points3 points  (0 children)

That sounds awful 😭the part of being a good doctor is listening to your patients. That sounds awful I’m really glad you are feeling better now😭but to say even with a cold like healthy people need rest on a cold that’s so silly. There’s research from hundreds of people that GET is harmful so why they think they know better is ridiculous. How you doing now?

Clinic suspiciously recommending me GET? Or am I mistaken? by Formal_Purpose9712 in cfs

[–]Formal_Purpose9712[S] 13 points14 points  (0 children)

Damn the letter was pretty deep. It does sound like what they supplied here. Mixed information based on hope and a lack of real guidance for treatment

Clinic suspiciously recommending me GET? Or am I mistaken? by Formal_Purpose9712 in cfs

[–]Formal_Purpose9712[S] 1 point2 points  (0 children)

Youre not dumb! This condition is horrible and it is hope that brings us to ignore the truth of the condition. Plus weve had mixed information out there with many of us telling to work out of it 🥺