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I understand the need to be positive about the way certain things are. I do. The world isn't entirely positive nor negative and balance in all things etc, etc and so forth. However, sometimes I feel that I & others with chronic health problems feel under some sort of obligation to demonstrate...

That's all true but not quite what I meant. Pre or around the time.of diagnosis I wasn't pacing because I didn't know what that was. I didn't feel well but I didn't know why. I was just ignoring symptoms completely (or trying to) in the hopes they'd go away. Until I just couldn't function at...

No, I don't think we should extend this to our situation. Not when it comes to ME patients. I have personally been told that I should go have counselling to sort myself out so that I'd be able to get back "on track" on more than one occasion. This from a relative who had years of counselling...

Me too. I was struggling for a while and the whole fake it 'til you make health strategy means actively ignoring symptoms hoping they'll disappear. It makes it hard to recall and pinpoint exactly what was going on at the time. Which, of course, makes the whole BPS approach really laughable...

I wonder if it's also worth finding out if those with a less clear cut onset was diagnosed with another condition that could confuse the clinical picture. In my own case poorly controlled hypothyroidism & frequent episodes of anaemia make it hard to be very clear about exactly what happened...

Not always. There is nothing worse than going through all the effort to talk to someone in the hopes that they can improve your lot, only to find they can't. To me that's no help at all. That's just an additional, unnecessary burden. While I would agree appropriate counselling should be...

I'm day 3 post 2nd AZ jab. I was at least mildly nauseous for most of yesterday & felt horribly ill yesterday evening. I also felt really, really hot. Too hot to sleep. According to IM it wasn't that warm - he was wearing a fleece jacket. Apparently, I felt cool to the touch. This morning...

This is what they'd been taught in epidemiology lectures so how an event or disease affects people be it in the same way or differently provides a wealth of information about the disease/event. Remember Simon Wessely is an epidemiologist - perhaps that's why he thought it appropriate to widen...

Right. So instead of learning proper listening skills they don't listen at all. What could possibly go wrong? Lots of professions have to listen to input from a range of people who will tell their story from their perspective. It is up to the person listening to that story to also ask...

It should be an optional small piece at that.

He's doing well now, thanks. I'll put a pupdate on the dogs thread in a day or so.

I had my 2nd AZ jab yesterday. Had zero side effects after the first which really surprised me. Yesterday about 10 minutes after the jab the top of my arm felt a little sore but the soreness disappeared within about 30 minutes. I was more headachy than usual yesterday evening but I was...

Almost by definition this will.exclude a great number of patients at the more severe range who have cognitive difficulties already and/or have no one to help them. One of the other issues I have with symptom.collection is that so many people have lived with symptoms for so long they forget they...

I'm probably not being terribly clear. I don't.think actimetry is a bad thing but I think if it's not used properly it can be a dangerous thing. I'm coming from a background where everything is measured & monitored. Vast sums are spend on extra bolt on kit to collect data, send alerts and so...

I see what you're saying @FMMM1 but the problem is I don't think actimetry can paint the full picture. It is simply looking at a the disease from one perspective and so the picture it gives can potentially be very misleading. We may well be measuring something but not necessarily what we think...

Counselling has it's place but when it is used as a sticking plaster measure it can cause more problems than it helps. For those who are dealing with discrimination and neglect on the scale we face it then it isn't going to resolve the issue. Worse still it allows the authorities the get out...

I guess it depends if one assumes suicide can only be caused by mental health problems rather than a logical and rational choice where one chooses the lesser of two evils. The burden of disability in ME is massively underestimated. Very ill patients already face enforced isolation and when you...

I agree. However, 20+ years in to life as a chronically ill person dealing with the health system and authorities has taught me a couple of things. Firstly, people tend to make assumptions and generalizations (yep, I'm doing it now too). So people assumed the PACE trial was studying ME or...

No. Unfortunately, that's not how the cognitive problems manifest, in my case at least. My cognitive function waxes and wanes during the day quite significantly. I can almost guarantee that in order to ensure being able to do the test once a week, you would have to pace yourself for it and...

We would also need to bear in mind that this captures physical activity only & not cognitive function. Even in my state I am probably more physically able than some forum members who have much better cognitive function than me. I am playing devil's advocate a bit here. I think this is a good...