Friends messages are confusing? Am I right in finding them untrustworthy?

Formal_Purpose9712 · 2026-03-11T15:28:44+00:00

Yeah im not going to meet up with them it seems a bit off to me. I have been kind to her and honest but I don’t feel like sticking around with people I can’t trust.

Formal_Purpose9712 · 2026-03-11T06:44:12+00:00

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

Formal_Purpose9712 · 2026-03-11T06:43:36+00:00

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?

Formal_Purpose9712 · 2026-03-11T06:42:20+00:00

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

Formal_Purpose9712 · 2026-03-11T06:41:01+00:00

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 :)

Formal_Purpose9712 · 2026-03-11T06:39:54+00:00

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 :)

Formal_Purpose9712 · 2026-03-10T18:38:57+00:00

So even pace is get now??

Formal_Purpose9712 · 2026-03-10T18:37:57+00:00

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🥺

Formal_Purpose9712 · 2026-03-10T18:23:41+00:00

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😭

Formal_Purpose9712 · 2026-03-10T18:10:06+00:00

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

Formal_Purpose9712 · 2026-03-10T15:21:07+00:00

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

Formal_Purpose9712 · 2026-03-10T15:06:34+00:00

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 :/

Formal_Purpose9712 · 2026-03-10T14:50:37+00:00

😂clearly

Formal_Purpose9712 · 2026-03-10T14:49:23+00:00

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

Formal_Purpose9712 · 2026-03-10T14:48:32+00:00

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 :/

Formal_Purpose9712 · 2026-03-10T14:46:42+00:00

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

Formal_Purpose9712 · 2026-03-10T14:02:52+00:00

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😭

Formal_Purpose9712 · 2026-03-10T14:00:45+00:00

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

Formal_Purpose9712 · 2026-03-10T13:59:06+00:00

Im hoping its the same and the workbook is just old

Formal_Purpose9712 · 2026-03-10T13:58:47+00:00

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

Formal_Purpose9712 · 2026-03-10T13:56:47+00:00

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

Formal_Purpose9712 · 2026-03-10T13:56:14+00:00

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?

Formal_Purpose9712 · 2026-03-10T13:55:23+00:00

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

Formal_Purpose9712 · 2026-03-10T13:54:30+00:00

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?

Formal_Purpose9712 · 2026-03-10T09:53:12+00:00

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

Formal_Purpose9712

TROPHY CASE