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Have been thinking about this a fair bit recently. One of the most common forms of advocacy with this illness is stressing how debilitating it is, but also how common, citing a greater prevelance than say, MS. However, it’s difficult to know how accurate our numbers really are with this. I...

There was the bit where someone compared him to a serial killer and nazi scientist, unfortunately

Yep. Tom Belger wrote the first one about a woman with severe ME, which also got syndicated to the Daily Mirror. Edit: that piece is here if anyone is interested: https://www.mirror.co.uk/news/uk-news/heartbroken-mum-who-can-only-12166605

I recently re-read this piece and thought it was worth sharing based on the person’s experience of the effects of bed rest. The key line, for me: I suppose GET should be a miracle cure for those of us in bed rest then? Oh, wait. :unsure...

Is there a primary source for this that isn’t behind the UCL paywall, out of interest? Would be good to have a read of the context here. I see this quoted many times, would also be interested to know if Wessely has ever responded to it in later years with a denial / subtle change of position.

I'm really enthused that someone has examined this formally. I think there are a lot of really interlocking issues about militancy in advocacy in general - when to be nuanced and quiet, when to be loud, how effective various forms of protest can be. Glad that someone is taking an academic look...

To me there is productive noise-making and unproductive noise making. People will likely have different definitions as to what this is, but to me, anything that helps push for better research, more funding for biomedical studies etc is productive. Tweeting people like Michael Sharpe or Henrik...

I agree, but I feel like it's overstating how many people are even aware of the importance of the work here. ME patients that are on forums and social media tend to be very loud, but it's still a fundamentally fairly small community. I hope there are some big donations in the wings, often seems...

I believe it's more about the fact that the health editor seems to have a very restrictive view of the illness. I wrote a very polite email to her when she wrote a piece about the benefits of the Lightning Process, which she responded to very curtly and said she wouldn't be replying to any...

Much though I agree with you re: broader support, I think much of the discussion here has been along the lines of people feeling like they (pwme in the U.K.) had been criticised. Just because some people disagreed with some words that were said doesn’t mean that they are not broadly supportive...

I think we all agree that it's a real shame to see a small independent film be victim of piracy, particularly as the result of what seems like a deliberately vindictive campaign. However, I do wish that some of the language used wouldn't imply that it's all the UK's fault. Maybe I'm more...

The wealthy get better anything, in any given system. And being wealthy does not insulate you from these kind of issues. It decreases the probability, of course - but look at all the patient accounts of this illness all over the internet. Many of them are in the US and insured up to the...

This is bizarre - I wonder who the individual / group of people referred to are?

I agree! I often have this discussion with friends. Yes, I now have extraordinary resilience, insight into how being very unwell for a long time feels, more empathy, more appreciation for the small things...but to some extent all of this is useless to me unless I am healthy again (or mildly...

While it may not feel like a gift for you (it doesn't for me), I'm not sure we can criticise someone for sharing their experience of illness. This is how people gain a greater understanding of the various nuances of chronic illness. The fact is, our experiences are often similar but sometimes...

It’s a good idea - however my understanding is that he’s currently writing a book, so apart from the odd freelance article isn’t doing any more substantial reporting for a little while. He was very friendly and enthusiastic in my correspondence with him though, so I think it’s worth remembering...

Possibly a chance to reach out to mental health advocates and form some allegiances along these grounds? More MH activism in mainstream media than you can shake a stick at these days.

This is difficult because it often kicks off a cycle that ends up being bad for everyone. I have no idea what illness this young woman had / has. It is certainly different from my experience of ME. For arguments sake let’s say she doesn’t have ME, and was poorly diagnosed. Well...this isn’t...

While I agree with the sentiment that the effect of CBT / GET has been long lasting - I think it’s problematic to suggest that everyone in the U.K. is so much worse off that those in the US. If you look at the fact that one of the best hospitals in the US (Mayo Clinic) and many insurance...

I get the sore eyes + the little body jerks/chivers. Often when I'm settling down to sleep actually. I haven't really investigated any of them but I'm going to suggest them at the next appointment with my doctor, not sure how successful I'll be. Sorry to not be of more help!