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The only reason I don't want my illness viewed as psychological is because I desperately want to get better. If the last 30 years of (wasted) research funding on psych research is anything to go by then if they have proved anything it is that ME/CFS is not what they think it is & nor is it...

Welsh is a lovely language. On a number of occasions I "had to" spend a week or even a fortnight in Wales. One of the sites was entirely Welsh speaking. Beautiful, musical language. They had to reset a lot of passwords for me, mind. Most of the high level passwords were in Welsh and there...

in fairness to them this was before I got ME.... But yeah, suddenly 12-18 hour days become the norm and you even get "homework" to do on your commute.

I know it's come up before. I remember describing it before too. Maybe elsewhere as you say @Hell..hath..no..fury... It does make a difference. I can change a double duvet using this method & my winter duvet is one of those that clips together sets - a 3.5 tog with a 10 tog. So bulky. I...

My top duvet covet changing method - if you can't get someone else to do which is far better - When handling the duvet I tend to roll it up as it makes for easier handling. Make sure duvet cover is inside out. Place it pattern or top side down on the bed and spread it out fully. Opening end...

This reminds me of an NLP course that we were all sent on in the early 90s. There was a lot of focus on "negative self talk". I'm sure the 30 people (out of 60) sold off on a 3 month contract with no guarantee of.continued employment found it very helpful. Not. It certainly did nothing for...

Me too. I don't believe I have EDS but looking at the chart in post #7 above I am surprised at the number of things I would say yes to. Despite the fact I consider myself to be quite a "stiff" person. I especially noticed this in yoga class where there were other women of a similar age. 2 of...

I agree. On the other hand the BPS publicity arm a.k.a. the SMC will continue to use those terms in news articles. I have had specialists agree that the name is a nightmare, but if they are writing to my GP or reports for employers or insurers they need to use the common terminology. This is...

There have been a number of med shortages over the last year. Generally due to pharma companies buying each other out, or moving manufacturing plants, some of them to China, and delays in setting up new production lines etc... It has affected one med I take, although we've got a work around...

This is the damage caused by not - -Defining harms in a reasonable & sensible way -Not having appropriate means to record harms -Not listening to patients or denying they are credible witnesses to their own experience It also highlights that the people in charge of decisions and policy...

And just think of all that lovely extra data about people they can hoover up and sell on £££!

It's the ultimate Catch 22 - If you say how ill you are and how much you struggle to even attempt the basics, then the perception is that you must be exaggerating. You must have a mental health issue because nobody can be that sick without actually being sick (according to current tests and...

I heard of one case where the person had been provided with a wheelchair and aids about her home, based on an assessment of her function & needs. It meant that she could be left alone and her husband could still work. Then the powers that be noted the diagnosis of ME/CFS and with virtually...

Right. So completely ignores the issues with brainfog for a start.

Yes, I think it's a self limiting behaviour in our case. Either there's little they can or will do for you in many cases. You soon realize you're wearing yourself out for no real benefit. Then it turns in to an avoidance strategy when it dawns on you they can do you so much damage.

I'd love if we could document if or how harms were measured at all. They have a very blasé attitude to patient safety and have gotten away with it so far. I would go so far to say that this looking the other way is a fundamental part to the IAPT implementation. By the time enough patients are...

I was cringing as I read this, what'll we be accused of this time.... but no, surprisingly fair. It is a totally different experience. Several members of my family suffer from a well under long term health condition for which there are treatments, but no cure. Their attitude to illness...

Thanks. :thumbup: I'll ask about adding it to our library.

Is there a copy in the library @adambeyoncelowe? I had a look under PEM and Questionnaires and Scales threads and didn't spot it. Would be a useful addition, I think. Completely agree, you can't just take PEM but need to see the whole symptom list.

For some people PEM can hit immediately, for some if can take up for3 days, or can vary. So the same person at early onset might experience it differently as time goes on or as their severity level changes. When I was newly ill and diagnosed as moderate - within the first couple of years - PEM...