Search results

So sorry to hear, but sadly not surprised, how badly the experience of applying for PIP has affected you Liv. :hug: It is an inhumane system designed to cut down on the number of claimants. The short time span is particularly cruel, as is the length of the form and the ridiculous questions...

Link added to thread.

Trish, I think most of us have grounds for submitting evidence, even if we've never done CBT/GET. The way we are treated by all doctors had been affected by the PACE trial (and hence the NICE guidelines). 'This is a great example of the kind of DISTRESS that has been caused by PACE. These...

Am I too late? Thanks for writing the letter guys, fantastic job. I can't find the other thread about the letter. Please add me, Jan Sussex if I'm not too late.

It means the same as manana, lol, we all know what that means ;) Dreckley / Dreckly - at some point in the future; soon, but not immediately; like "mañana", but less urgent (derives from English "directly" but differs in meaning) (c.p. Presently, British English, but formerly the meaning was...

I've often seen clocks with Dreckly on them, I didn't have a clue what it meant, so thanks for that.

I had hope since stage II Rituximab trial, it was a tiny light at the end of a very dark tunnel. It has now gone out. :cry:

It's difficult to tell if other conditions are caused by the ME, such as trigeminal neuralgia, which began after Tetanus/polio vaccine, neuropathy, under active thyroid and O/I. I had none of these conditions when I first got ME. I have a heart condition, (leaking valve), which I think may...

That's what I understand remission to mean. I'm really uncomfortable with having to vote for something that says remitting. (I voted for option 2) I have never been well enough to return to work, travel very far even within the UK. My 'remissions' mean I am not bed-bound, but still too unwell to...

The first two options both presume remitting, do most people experience some form of remission,I never have?

There isn't an option for staying the same either is there? o_O

I think there needs to be a fluctuating option as well as relapsing remission. I think many people's illness fluctuates but it doesn't mean they have any well periods, just different degrees of sickness.

Fascinating and heart breaking at the same time, so happy for GWI's but it says so much about the lack of funding for ME.

We are all pretty desperate to find this out but it seems we have to wait until next year.

''it could be argued that a more comprehensive framework of clinical management of patients with symptom-based diagnoses/functional somatic symptoms is needed'' No shit. Patients have been trying to tell you for years that your one size fits all get/cbt does not work for most and harms many...

The woman can't even diagnose ME, let alone research phenotypes. Our knowledge of ME was further advanced before the psyco crew muddled it in with every other sort of chronic fatigue.

Lol, I obviously wasn't including those profiting from our misery.

The only people they actually help are probably those who are misdiagnosed and never had ME.

Surely this research makes the UK services sound crap? After 12 months 72.4% of patients are the same or worse. They don't even have a clue what happened to over half of them, as, as we already know you get dismissed once you've done your cbt/get. So to me this shows that for 72.4% of...