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And most definitely proved something could be done: by making their lives harder and endorsing treatments that best case made no difference and arguably made their condition much, much worse. Well done! ETA - bolding is mine

There are none so blind as those who will not see...... It hasn't suited the BPS, insurers or DWP agenda so a great many people have spent much of the last 30 years trying to avoid looking at this kind of stuff.

I feel sorry for some of 'em. The ones who are too ill to learn about and engage with the politics, the newbies who don't know any better. I gave up on AfME in disgust fairly early on. I know some people who have the energy to educate themselves about the politics, who are quick to complain...

Based on the last few posts and some extra bits from me : 1. I think they have to allow for people no longer triggering PEM because of self management. This does not imply they have mild ME simply they manage their lives in such a way As to significantly reduce the risk of inducing PEM. 2...

I know when I was less severely ill and didn't know any better I still exercised. I could exercise at that point, but as you say @Barry , the aftermath was very,very different. The more I tried to exercise the worse it and less able to exercise I became. This is the opposite of my experience...

In my opinion these are simply too vague. They could be a very, very loose description of PEM, but equally they could describe someone with anaemia or hypothyroidism and I'm sure many other conditions as well. I agree the NAM descriptors are much better. If PEM is going to be treated as a...

Thanks for looking into this @Simon M. It's lot of info so I will have to come back and re-read a few times to get my head around it. First glance: I share your concerns. I am very much opposed to questionnaire that require "judgement" I behalf of the researcher. These have been used to our...

@Wonko I would get back in touch with them and explain that you have asked for, and previously been told you can have, a paper hearing. If it were me, I would phone them, and then follow up with a letter. Just make sure you get the name of the person you spoke to, record the call of you can or...

Right. So they just want their speakers talk at you. No dialogue or discussion . Less education and inspiration and more indoctrination in my view.

You're not alone @OverTheHills :hug: 2 decades in and I still haven't got the hang of it. A work in progress...

No. I'm not discounting them at all. I'm simply pointing out that some of us have to develop coping strategies to help prevent us from joining their number. We need hope but pinning too much hope on each potentially useful piece of work, hoping it will be the cure rather than a move forward...

So true. I've also learned that it takes more self discipline to stop fighting than it ever did to soldier on, even though I've also l learned soldiering on for just a little while will leave me incapable of doing anything at all.

I only read the extract above but: Stop right there - most of the "stigma" and discrimination I have experienced is due to the fact that people don't believe I have a neurological or any other kind of "condition". At best I'm perceived as a deluded, delicate flower who is afraid of life...

To be honest, it's more like the longer you are ill, the more you have battled with the the disbelief and denigration, the having hopes raised and then dashed again, the more philosophical you (have to) become. Especially, when you are more affected. It's a coping mechanism.

So I did a little search: https://www.nbt.nhs.uk/our-services/a-z-services/pain-clinic-services/pain-clinic-team Hazel O'Dowd is the Head of Dept.

I saw the word Bristol.......:cautious:

I might just print that post and stick it on my wall.....

So, Prof Crawley was allowed to trawl through school records and invite kids for a "screening " for referral to her clinic. Given that Prof Crawley has a history of conflating chronic fatigue, or even just some transient fatigue, with chronic fatigue syndrome it is very possible that she...

And bearing in mind that prior to the common use of the internet patients were actively discouraged from contact with other ME patients ......

Ironically, I know of a case of a teen with a serious, chronic and very well understood condition that had very serious potential consequences. This teen's home life was difficult and the condition was not being managed. There was a fair bit of absenteeism from school. The hospital team...