Search results

From the FAQs: I don’t understand why people who have recovered aren’t being included. Understanding why some people seem to recover and others do not is hugely important. Presumably, it could be that some people have genes which increase the probability of recovery, or it could be that the...

I am a participant with the ME Biobank and I am intending to volunteer to participate in the GWAS study. I am happy for my anonymised data to be used by other researchers for any ethically approved research – even if that means that my anonymised data will be shared with researchers I do not...

I’m not particularly knowledgeable about all the different questionnaires, but I have filled in quite a few over the years. One thing I would like to see included, whichever questionnaires are used, is the opportunity for participants to add, as succinctly as possible, any significant symptoms...

I fully understand these sentiments, and I share your anger at the SMC’s treatment of ME/CFS. But I still think it is an issue which needs to be discussed, and a decision which needs to be made one way or another. The fact is that if Chris Ponting et al give a press conference at the SMC, it...

I’ve said this before, but I think we may need national media coverage in order to get enough participants. @Andy, or anyone else, do you know if the Science Media Centre has been approached to enquire whether it would be willing to facilitate a press conference with Chris Ponting and others who...

I’ve written to Dr Deborah Cohen who did the investigation for Newsnight to ask if she is aware of the PACE trial and related issues with the NICE Guideline etc.

Many thanks, @Simon M. Another excellent blog. Just one question. You write: “When salt is added to a sample of healthy control cells not much happens electrically. But when salt is added to an ME/CFS sample, electrical impedance shoots up, as the graph below shows. It does this for every...

I think I understand your point, but “absolutely necessary” seems to be a rather woolly term that is likely to mean different things to different people. I also think it’s important to stress that many of us are never able to do what we consider to be absolutely necessary (which I’m sure you...

I have noticed that my urine often has a rotten egg smell (which I notice more because I use a bottle.) Prof De Meirleir once claimed to have developed a test for ME which measured levels of hydrogen sulphide in the urine - what he called a neurotoxic metabolite test (NMT). I know that turned...

Thanks for your message. Here is the thread with the finished version of Blowin’ in the Wind: https://www.s4me.info/threads/a-song-for-me-blowin-in-the-wind.3747/ https://www.youtube.com/watch?v=BncUDXRA1v4 It’s had over 11,000 hits on YouTube now and nearly 26,000 views on Facebook. You...

This raises an interesting dilemma which many people face: How should you vote at a general election if your MP has been helpful to you personally but you disagree with their politics and/or the politics of their party? My MP has been helpful to me. He has come to see me at my house, responded...

Yes, many thanks to @Andy and @Chris Ponting, and thanks to you @Simon M for all your work and for getting Chris interested in ME research through your friendship. This would clearly not be happening without him, and goodness knows what the CMRC might be up to by now without his involvement...

Taken from a post by @Esther12 on another thread:

It would be interesting to know how often panel members have been given anonymity in previous investigations. It would also be interesting to know what specific evidence was presented to the HRA which resulted in anonymity being deemed necessary in this case. I wonder if this could be obtained...

Thread: https://www.s4me.info/threads/denialism-what-drives-people-to-reject-the-truth-by-keith-kahn-harris.5247/

With any commercial test, I think the onus is on those are are charging for it to prove its reliability. Independent researchers have concluded that the test is unreliable and should not be used in the assessment of people with ME/CFS. If Dr Myhill and her colleagues are still convinced that the...

I wonder if McLaren Howard could request 20 samples from the ME biobank – 10 ME patients and 10 healthy controls – to see if his test can differentiate between the two. If he is right it should be able to. If Thomas et al are right it won’t.

Thanks for taking the time to respond, Michiel. I guess this is just a typo but it should be “Without blinding or objective outcome measures.” As I’m sure you appreciate, blinded trials with subjective outcome measure are fine, as are unblinded trials with objective outcome measures. I don’t...

I tested negative for Lyme on the NHS in 1992 when I was first unwell. As far as I’m aware I have never been tested again. I assume that is not unusual. I’m also not sure how we can accurately determine the probability of the NHS antibody tests producing false negatives unless we have some...

Lyme disease was back on BBC R4’s Today Programme this morning. Much more balanced discussion this time. Starts at 1h 49m 54s: https://www.bbc.co.uk/sounds/play/m0007k5f Two interviewees: 1) Dr Saul Faust, Head of Lyme Disease Guideline Committee at NICE. He agreed that the NHS antibody tests...