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That's the whole problem with outsourcing, isn't it. Companies receive financial incentives to do as many assessments as possible, and are pressured to engineer negative outcomes for as many claimants as possible. So if an assessor lies and gets away with it, they're more likely to be promoted...

I agree, there's nothing mysterious about it at all. My dad walked half an hour to work every day for decades, but if it had been on a bus route or he'd had a car, he wouldn't have done. The developed world is engineered to encourage us to pay for the convenience of not having to do activity...

Even the small garage that MoTs my car records all the phone calls. It really, really isn't difficult. I can see why they would argue that it needs to be done by the contractor so there can be no claim that recordings have been edited, but it's as easy to test the recording levels on a mobile...

I must admit I hadn't actually thought about it being used in primary care, although of course that doesn't mean it wasn't the team's original intention. I'd been working on the assumption that it would be used as part of a research toolkit, to ensure that participants in trials are highly...

I don't think that really matters – if it shows that almost everyone with ME gives a signal, and almost no-one without chronic disease does, it's enough to derail for good the BPS approach. In any case, surprisingly few diseases do have highly specific markers. Even well-characterised ones...

It might be that they did have enough informal data, perhaps from a few personal contacts, to back a decision to continue development? I guess researchers might employ these strategies to test their work, specially if money is tight and the process wouldn't raise major ethical concerns.

I agree, but it's probably inevitable. If people are trying to discuss a phenomenon that isn't easy to describe succinctly and then stumble across a word or phrase that really seems to nail it, they'll naturally tend to find themselves using it. What irritates me isn't so much the adoption of...

PS: I've just realised that the final paragraph about the survey says this: You might also like to explain why you have not engaged with the NHS or applied for social care during this time (we know that some of you choose not to do so because of the lack of understanding about ME/CFS and...

It's an important point. I'm thinking about emailing them to say so – since it's not a survey with fixed questions, it's easy enough to respond by explaining why you avoid actually asking for help.

I think the deafening silence here may be linked to the fact that few of us have actually had any of these interactions in the last two years. I can't even remember the last time I discussed an individual ME symptom with my GP, let alone the illness as a whole.

Only just seen this thread, and the original article is no longer available – oh, God, I'd no idea he was a Sheffielder. I'm so sorry, we're not all like that! :laugh: And actually, Sheffield psychiatry isn't all like that, either. The four to whom I was referred in the 1970s still rank as...

AtW began in 1994, so it was pretty well established by the time I first applied in 1999 (I've used it three times). I needed an advocate as much as anything, and that's why I decided to try it. I was lucky in managing to find an OT who understood that she could have a wider role than just...

I seem to have been a static magnet all my flipping life. I get really big shocks every time I touch metal if I'm insulated from the ground, and I can see the arc of light too. I used to break photocopiers before I learned how to discharge it before I touched them – at work, I used to wear a...

I just meant comparing the fatigue to that of cancer and MS. It was really helpful when speaking to those I didn't work with directly, as people often have friends, family, or neighbours who've been affected. It was unnecessary for those around me, of course, as they could see my face going grey...

This can be a sticky one, but my feeling is that it's better to use examples that a range of people would understand, and not get too tied up with ME politics. For instance, we talk a lot about fatigue and fatiguability, but people without ME are likely to be much more familiar with the former...

I agree – I actually think attending meetings in person is preferable, even though it involves travelling and making yourself presentable in ways that aren't so necessary at home. You also have the pleasure of spending a bit of time with people and catching up with snippets of news (both...

Things that helped me: Having my overall salary reduced by one week's pay to give me an additional week's leave. It allowed me to use a 'half term' pattern so that I never worked more than six or seven weeks without a break, and I was able to adjust to the salary reduction easily as it was...

Fascinating! Thanks for posting it, @Colin.

Just seen Dr David Strain on BBC News 24, explaining why Long Covid is different to other fatigue syndromes such as CFS. Paraphrased: ____________________ With LC, it's like having an out of date smartphone; no matter how well you charge it up, the battery isn't in good condition and it...

I don't think we can, at least in many cases. A lot of common viruses cause a fairly characteristic range of symptoms, but unless a patient is worryingly ill and needs investigations, 'I'm pretty sure it's a virus' often as much as the doctor can say. There are even two viruses that cause...