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Thanks, and thanks for the helpful questioning of this estimate of the patient community. In terms of estimating the patient community, the key question is probably "how big is the 'silent group' that is linked to the patient community but not counted by likes of either of the two main...

If the UK patient community is 40,000 people, what does that mean for recruitment to the GWAS? In marketing terms, including non-profit marketing, getting 50% of any audience to do anything is a very tall order. Assume we can persuade 14,000 people with ME (40% of the UK patient community with...

My estimate of the size of the UK patient community - feedback appreciated The UK online patient community, loosely defined, might be 35,000 people, with perhaps another 5000 beyond that who can be reached through ME/CFS groups and charity member mailings. So 40,000 people with ME in total. (I...

Some comparisons with the GLAD study, which I think illustrate why reaching the target will be so hard, at least recruiting in the UK: Key numbers 1 in 3 people have ever had anxiety or depression, so the GLAD study needs to recruit less than 1% of its target audience. In marketing terms, this...

Happy Christmas and thanks to @Chris Ponting,@Andy, Sonya Chowdhury and all members of the Public Patient Involvement Group who have been putting in epic amounts of work to try to make this project happen. Above all, thanks to all the above for engaging with the patient community in a real and...

You came across a smart and thoughtful, as usual. You raised important issues, and as you can see from Andy‘s reply, the project, particularly the PPI group, has spent time thinking about just these things. I have tried to engage With ICC-only supporters but got absolutely nowhere. Still, I...

From the website (for referennce): Recruitment Plan for the ME/CFS Biomedical Partnership We will need saliva samples from at least 20,000 people with ME/CFS for the genome wide association study to look at whether some of the reasons that people get ME/CFS are genetic. You can find out more...

I think Koroshetz is referring to something rather different. The key point is that here are people who meet the criteria for me/cfs, appear to have me/cfs, but deep exclusionary diagnosis during a week-long in-patient admission at what is probably the best diagnostic facility in the world (the...

Read the transcript: mostly the NINDS council report implementation seems to me to be based on a lot of good things, but none of them is game-changing. Even so, a few things that came up caught my eye: 1. Funding, including possible set-aside funding 2. A new biobank of mecfs samples...

Not an answer for ME/CFS, but here's an example of (non-nanoneedle) bioimpedance being used to measure changes in cells for studying the effect of candidate drugs in fibrotic disease. https://pubs.acs.org/doi/full/10.1021/acssensors.7b00442?src=recsys# Crucially, the study identified what was...

Janet Dafoe has posted a very helpful note from Ron Davis on PR explaining in much more detail the status of the nanoneedle project and work to find something in the blood: [Janet] There are a lot of various threads and tweets about this so I asked Ron to clarify where the research is at and...

That is a very important question. It (or at least the biology underpinning the in vitro test) was discussed at length on deep into this thread but was over my head. What I would say is that electrical changes are often used as proxies of changes in cells. It is used at the level of a solution...

Thanks. No, it has not, take a look at this blog, with my labelling-tweaked verrssion of the PNAS paper graph https://mecfsresearchreview.me/2019/05/08/nanoelectric-device-could-lead-to-a-diagnostic-blood-test-for-me-cfs/ Yes. Neither Ron nor anyone else has suggested a trial. They are...

Latest from Ron Davis: more evidence of "something in the blood" © Mark Tuschman (with thanks for his permission to use here) More clues are pointing to a role for blood plasma in ME/CFS. At a recent talk, Ron Davis presented data showing that ME/CFS cells behave normally in the nanoneedle...

Comment Thanks for all the analysis on this thread. Here are some additional points from me. I guess the main point is that the full text doesn't really live up to the big claims in the abstract. But some of the findings are interesting. The conclusion is more accurate, so I'll start with...

Oh dear, another paper I'm going to have to read... (abstract) Background: This is the key point: From two independent proteomic analyses using circulating EVs from ME/CFS, healthy controls, idiopathic chronic fatigue, and depression, proteins identified from ME/CFS patients are involved in...

For the general public, I think patients tell the most compelling stories. But I think that a lot of patients would like to hear from the researchers running the trials: Are they making a good case for me to give them my sample and data (Have they convinced this is an important study to join)...

Thanks for all the comments On the blog and the facebook page about it, there are quite a lot of people saying that they already use resting heart rate to help avoid PEM eg Important points. It's worth noting that all Snyder's health "discoveries" were checked out with clinicians (avoiding...

Love this! And I agree with the later comment that "pass it on" is key. For that reason, we need a good name for the GWAS project that people who know nothing about ME will remember and pass on. And that when you put into google will bring up the GWAS project website (so nothing too generic)...

Mike Snyder is a pioneer and I thought he gave the standout talk at Stanford this year. Stanford symposium: the potential of smartphones to better understand diseases, including ME/CFS “We think smartphones will be the most important health tool in future”, said Dr Michael Snyder at the recent...