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Here's where the lack of reporting of harm from PACE(& CFS clinics) comes into play. Even if it's a null treatment it doesn't matter, it won't hurt you. In this case, placebos can cause harm.

Has he though? I remember seeing a documentary in the 90s or early '00s about ME. They discussed a child who was a cancer survivor and then went on to develop ME. Her parents didn't realise just what they were signing up to when they brought he to see Wessely. They had their initial...

This I think is at the heart of the sweeping acceptance of the work of Wessely, White, Chalder. They claim to be experts in ME/CFS, but are not. How can you an expert and yet still no little or nothing about it? They are "expert" in delivering particular treatments that they have helped...

I find my earplugs block the sound of the ensuite extractor fan completely. I reckon it's mounting is slightly loose and so it vibrates a little - it's on IM's to do list. I use Moldex spark plugs soft foam 35db ear plugs. I have quite small ear canals/openings, but these are quite...

I agree with the distraction technique, if some noise can be tolerated. I find some noise more bearable than others- I love the sound of waves on the beach or wind in the trees and cope best with that "type" of noise. Possibly because it gives me a rest from tinnitus. Although I've had...

Doesn't it just! It would appear that not only is it believed can CBT replace medicine, it can also replace one's faith or religion. A snake oil cure all.

Yes. I've had similar problems. It got really bad after a very noisy neighbour incident. After that stopped I still had periods where thought I could hear very low level noise. Annoyingly/confusingly sometimes IM couldn't hear it, sometimes because there was no noise there, sometimes simply...

I've tried it among a list a SSRIs and SNRIs I've tortured myself with in attempts to get better. I've always been completely clobbered by side effects even at minimal doses. No benefits. I would agree but.... It isn't unknown to get to the optimal dose of drugs like this, have some...

While I agree this doesn't have anything to do with ME per se, I think it says much about the mindset of some mental health professionals. Particularly those who are part of the current BPS school of thought i.e. you can selectively ignore the bio bit or equate correlation with causation. In...

It's a shame they equate ME to chronic fatigue, but then it appears they can't spell fatigue anyway. Still they acknowledge kids with ME need support & that's a step forward.

(Bolding mine) This being the GLAD study and so not necessarily how the ME GWAS will do things, but I wouldn't be happy with if my saliva sample was shared.

@Andy, is there any more detail about the data sharing side of things we could go and look at beyond that paragraph. Also, I would like to say, I appreciate you have been extremely patient, have worked really hard and, not least, are ill yourself. This is really important research made more...

It's certainly food for thought, but if we are going to have any research done, of any kind there will always be the risk that some pillock is going to twist things to their own ends. If we don't have any research....well, we'll never get anywhere. As I now see it, thanks to @Andy's...

With regard to further contact, it might be useful to understand how this will work. Perhaps it would be helpful to understand more how this will work? Will the list of participants be held securely and not be shared with other researchers? When requests for new research comes in then...

So, for the GWAS study the only questionnaires used will be the ones used by CureME as these are the ones needed to make a meaningful comparison. The use of the CureME data probably makes significant reduction in costs and time, as it's already there, and therefore increases the chances of...

Speaking entirely for myself I wouldn't opt-in to be recontactable by anyone other the original researchers should they need more information. I don't want to be on anyone's list for anything where it's at all avoidable. I don't know what's normal for this kind of thing though.

Good clarification, thanks @Andy! The concerns I raised were about what questionnaires would be included in the GWAS study itself and your clarification puts my concern to rest. Studies by other researchers that crop up at a later date, requiring additional questionnaires and patient can be...

....or as my old maths teacher put it: "the emptiest vessels make the most noise"

Re the questionnaires business (again). I agree with @Ravn and wouldn't have an issue with suitable questionnaires. Regarding the providing a sample and then you can fill in currently unknown questionnaires later as an option - I'm afraid that would put me off completely unless the...

Annoyingly, although I had sent inks through to the person who runs my local group, they didn't include anything about it in their newsletter. Though they managed to include info about an expensive product one person found useful. :rolleyes: I have contacted again and requested the information...