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I had a positive tilt table test. It was very unpleasant at the time (my heart stopped) but the PEM was no worse than any other kind of hospital appointment. As long as you are properly monitored, I think it is worth having. IMO all ME patients should have one and I think the opinion of your...

Does anyone know if the high female:male ratio is only in adults or in both adults and children?

No beeping alarms

The Guardian also has a long history of trivialising ME and mocking ME patients.

Excellent @JohnTheJack Well done and thank you.

Thanks for your response, Simon, it's much appreciated.

I'm sorry to pour cold water on this (and Simon M's excellent blog) but I'm imagining in five years time if the results are disappointing and they say: "We spent £millions studying thousands of patients on GWAS and found nothing, so we're not funding any more research into ME". If you go...

To compare GWAS for ME with the highly-studied diabetes*, which receives extensive clinical overview, is overoptimistic in my opinion. For any finding from GWAS to be meaningful, you need some basic understanding of the disease, and especially some biological markers, which ME lacks due to...

This is interesting, thanks for posting. I have long thought that impaired blood flow can explain almost all our symptoms.

I think this is a very good point. It is difficult to come to terms with having the disease when first diagnosed. Knowing how bad it could get must make it much harder to deal with the shock of diagnosis. But I think it is very important that people should be told so that they can protect...

I do have this experience and it is brutal. It starts when you share your ideas and data informally with your colleagues who then proceed to pull it all apart in fine detail until what you thought was a good result now seems like a pile of rubbish. You then do more work (for perhaps months or...

I was unable to complain at the time, however I did make a specific complaint to the GMC about the authors of a letter to The Independent in 2012 (sent as part of the SMC campaign) as part of a wider complaint about the PACE authors last year. I received the standard dismissive response which...

I have not fully followed this thread, so I apologise if I'm posting this in the wrong place. But with regard to any allegations of death threats or other forms of alleged harassment by ME patients against professionals, I have never understood how senior professionals get away without being...

IMO the responsibility for the lack of scientific research into ME lies squarely on the shoulders of the MRC. It has failed to ensure robust scientific and clinical research into ME. It cannot claim to be a mere passive recipient of funding applications and blame the lack of research on lack of...

I, too, have received a response to my complaint to the GMC that they will not be taking the matter further. Among other things, I specifically complained about the signatories to a letter to The Independent in 2012 which was part of a SMC-orchestrated media campaign to portray ME researchers as...