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I'm still processing this but I raised the issue of how diagnosis works on another thread where we had got into a discussion about PEM. In your diabetes scenario, diabetes (the excessive passing of urine) is the endpoint of earlier processes, which is why you give it a letter at the end of the...

Merged thread In this Twitter post, Robert, a PwME, says, 'I have severe ME/CFS and have raised over £20,000 since 2013, mostly via http://justgiving.com/Rob40'. On another thread, we've been discussing how it's difficult for PwME to donate to our charities because PwME are often so ill that...

Thank you, @Jonathan Edwards! That's fascinating. I've just read it and am going to reread it to try to really get my head around it. What about publishing a version of this, if so many doctors struggle with the concept of diagnosis, including the big guns? It would be nice to keep ME/CFS as...

@Jonathan Edwards, I have the feeling in this discussion of PEM (which I must admit I still don't understand) that you as a clinician are approaching the question of diagnosis in a way that's based on your training, and that the concepts used are perhaps very different to what we as patients...

This lack of critical thinking, and unwillingness to face critical thinking, is horrific. I wonder if it's more common in medicine because of its hierarchical nature. But once escaped from any consideration of career, and safely in retirement, ex-scientists and ex-clinicians are free to shoot...

I'm frankly disappointed that there seems to be no patients' organisation that consists of appalled patients calling for better standards in medical research. There are certainly enough retired researchers and clinicians now in poor health and on the receiving end of crap research to stock such...

Interesting! I wonder whether a PwME could get onto the ME committee? Not sure how the committees are arranged.

But this is precisely what happens at conferences! People present their papers, they get questions, including critical ones from the floor, and they're expected to answer those questions. I think it would take a very peculiar sort of person to think that questions from patients about their...

If I were doing medical research and there was a patient forum discussing my paper, I'd love to know. Sealioning is something else entirely - it's pretending to ask questions in good faith while actually and deliberately trolling someone with such a barrage of questions that they can't function...

This is cheering! What do you think of the idea of emailing researchers to let them know that their papers have been posted on the forum for discussion and inviting them to join in? I was thinking that, among other things, it would be a good way to communicate to BPS people doing poor trials...

I wonder if it would make sense to have a standard email that goes out to the authors every time we start a new thread on a particular research paper. Just along the lines of, 'Dear X, Science for ME is a forum where scientists, and patients interested in (and often with a background in)...

I always worry that we are just talking to ourselves here. In what way do you see us as having a big impact? To whom is the word spreading? It's a real pity that more scientists don't come here to debate their work.

Because isn't this worsening of symptoms following exertion the key symptom that distinguishes ME/CFS from other things? If we don't have PEM, aren't we just a bunch of tired, poorly people? But surely that doesn't mean that we have to pretend that we don't have this symptom? Do you mean that...

Doesn't the unpredictability issue simply mean that our condition varies spontaneously in severity but that we can also make it worse by over-exertion? I take your point about people being bad at ascribing cause but if overdoing it is followed the next day by far worse symptoms a thousand times...

It drives me nuts that our big funding bodies are still funding open-label, subjective-measures BPS studies and that medical journals are still publishing them; that ME/CFS clinics are still following a rehabilitative model with their 'pacing up'; that concepts of 'central sensitisation' and...

I agree that no one seems to know what 'malaise' means but I think 'crash' implies something severe and sudden, and PEM may be neither. You don't like PESE (post-exertional symptom exacerbation)? I don't, because PEM for me can bring up new symptoms I don't normally have and has the key problem...

I followed the advice of Dr Michael Greger (of NutritionFacts.org fame), who looked at RCTs on removing warts with duct tape, and managed to completely get rid of a small wart that had been on my arm for ages, over the course of 3-4 weeks. The key thing about the duct tape, he reckons, is that...

Do you have any examples of what they've done?

That's fair enough, @NelliePledge! We're all short on bandwidth. Does anyone know what's going on in Germany and Austria that would be helpful to copy elsewhere?

This is another hopeful example in addition to @EndME's because of how impoverished and debilitated PwME are, which I think is likely to be a huge barrier to our donating and fundraising ourselves.