Search results

And here we have an issue: Are the good ones, using CBT as a support and adjustment therapy, doing so on the quiet? Are they doing so knowing it isn't actually what the guidelines mean and want to keep their heads down in case someone notices and demands they inflict the toxic kind?

How true. The new normal in terms of cognitive function is definitely much, much lower than normal. On a very good day, it is still much lower, but a marked improvement in my New baseline. Then there are the bad days :(

In my own case, I have found myself discussing PACE with docs in the past. You know you go to see someone about something totally different and, wow, they've got an opinion about ME and would much rather discuss that.:rolleyes: At the moment you'll get: but this has been published in reputable...

The snag is I often forget the symptoms till someone says or describes something and then think: "Oh, yeah! That happens." Sometimes I've been in the phone when my husband comes home. He sees me chatting and wanders off. When he sees me again not 5 minutes later he might ask who was on the...

Not sure it was available at the time or if it was I was unaware of it. Tom's paper worked nicely ,thank you. ETA - Unrealized that sounded a bit st after I hit the post button. Not intended that way. The thank you was,again, to Tom. Also I needed to answer in relation to PACE 'cause that's...

I remember @Tom Kindlon put a huge amounting of time and effort into going through the MEA survey about PACE and the people whose conditioned became worse because of it. I know he posted about it on other forums. Also there is Tom's paper on the under reporting of harms in PACE. When I had a...

Actually, now I think about this a bit more ...... There are controversies around PACE but I think everyone has gotten to the stage where they can see that PACE does add to the debate. It contradicts the previous studies because It pretty effectively shows there is no real benefit to CBT (PACE...

Now let's hope they have an open data policy....

Same circular bullsh**. CBT & GET were the treatments they wanted to inflict. There were some not great & rather subjective trials. NICE were recommending CBT (PACE style) & GET, but the only evidence they had were rather poor trials. The PACE trial was supposed to shore up the previous body...

The odd thing about the getting lost in familiar spaces while driving - I was still driving competently when this was happening. Driving skills are obviously very different in terms of brain function. I very rarely feel up to driving these days and if I do drive it's normally under...

Just signed. The numbers are going up as you look at it. 1,450.....

Sure. My husband is like that. The most useless navigator ever & he even admits it himself. I was the opposite though and on a good phase am still ok or not too bad. When PEMed I'm worse than him though!

I read this with a sinking heart. Sometimes I wonder if they actually set out to downplay the condition.

Does this count? I'm a pretty good navigator and I map read (proper road maps back in the day) very well. I had no problems translating my direction of travel i.e. north, south etc with working out whether I was following a route up, down or across the map. Then I started to get lost in...

It most certainly is all about him. In his mind anyway. It's only now that he claims to have been misquoted by some DWP official when saying that giving benefits to pwME just lead to dependency. Where was this correction over the last 2 decades when very ill people in dire financial straits...

In my experience some people seem to assume those with a disability have a fairly static or stable condition. Someone wheelchair bound with a spinal injury perhaps. Obviously there will be health complications due to that but, assuming those are managed, the condition and abilities of that...

I understand your call to protest/advocate/make things happen @MErmaid . I think it's worth having a dedicated thread - do we have one? We need to discuss what limits our efforts and figure out how we can work around those limitations where possible. There is another angle on this from the...

Yep recognise all of these. Some of the more obvious ones I forgot: Spatial awareness - cutting myself preparing veg, burning myself in the kitchen. The decision making thing is a real issue - when that starts I can't even handle a would you like tea or coffee question - even though I rarely...

I suspect that as the internet has become more widely used and patients found each other online, people have done their homework first and avoided certain docs like the plague.

Recognize @Keela Too's and @Skycloud's descriptions. Spatial awareness: missing shelf, table, countertop when trying to put an object down. Missing an object I'm trying to pick up - and knocking it over instead, especially if contains liquid :rolleyes:, unable to walk though doorways without...