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Emails can bounce from time to time - they may have a log of any bounces which could be resent. There can also be delays in the system sometimes I wonder if bulk emails get delayed. One of the things I have noticed here is that one ISP bounces a lot of emails from us. Other bounces seem to be...

I wonder if one issue is no one specialism really looks at ME so its not a natural area for existing research groups to do - unless they have some links or someone else has a hypothesis and evidence which overlaps with their area of research.

My initial reading of this made me wonder what useless treatments Tuller (@dave30th) and Lubet were proposing that got rejected (I was perhaps expecting some satrical piece). But then I realized that the the article about the useless treatments was written by Tuller and Lubet (and the useless...

I can see support (including psycological support but also practical support) can be really useful for new patients. But is CBT the best way to deliver psychological support. It seems very inflexible and manual driven and I believe is often given by 'CBT therapists' rather than fully trained...

Yes following from what Trish said. I think we will go through the points made and expecting a far bit of duplication and overlapping points we will try to summarise the various points for the different aspects of the proposed guidelines. So well written isn't necessary although understandable...

I've opened it in acrobat reader and it will read it aloud - On the view menu there is a read aloud option and if you click on some text it will read it to you.

I found this blog useful in explaining https://phastar.com/blog/250-statisticians-view-on-pfizer-covid19-vaccine-data If I understand correctly the 43000 is the number of people enroled in the trial and they sample when 90 people get covid and then look at effectiveness. So 8 in the vaccine...

I think studies like this could prove important in terms of looking at likelihoods of getting ME (or other complications) and then a good follow up. I assume they have a good random sample. Although a longer follow up than 18 months would be good. I wonder if different diseases have different...

But its not because there evidence is meaningless and most of the world now knows and understands that. They relied on their status and networking skills to push the message to people who believed them and didn't look but once people look then trust is lost.

This is an interesting video about covid testing and PCR and interpreting the results (especially at high CTs) from Vincent Recaniello

I think there could be a much better balance than what is happening in the UK. I get the impression that the current UK strategy is to try to keep figures at a 'lowish' managable level and when, like now, they have got high then to clamp down a bit to reduce them. It feels like a result of...

I suspect people like Crawley are harmful to research (not just ME research) in that they get a publication record sufficent to get senior academic positions by very poor quality work. Others may see that and take that route rather than trying to do good quality research where there is probably...

It is a really poor statement from them. Firstly they describe it as a position paper when really it is a one page statement with no attempt to relate their beliefs to the scientific literature or to try to justify what they are saying. This comes across as making them look weak, lacking in...

I think there could be studies of the harm done by GET which would be very worthwhile if NICE continues to recommend it (or even doesn't come out against it). Currently there is very little in research in that direction - one of the things that those backing GET keep arguing is that its only...

Given things like pacing and PEM I've always thought the 50% doesn't represent a good concept. It doesn't seem to cover the notion of an imparemtent in the form of if I do X then I won't be able to do {x,y,z,....} for a time t (with bounds) but if I don't do i where i is from {x,y,z,.....} then...

I think one of the important things is that ideas of what imparements matter are driven from patients (and carers) rather than any academics. That way the things that really matter come across - also temporal issues around imparements need to be raised (for example, the inability to plan to see...

I think that is an interesting idea. I wonder if there could be an addition to the DecodeME project (with separate funding) that looked into these issues taking advantage of the cohort that is being developed (and even diagnostic information to get agregate levels and types of impairment). I...

The things that immediately come to mind are: - Via contacts with local support groups. I wonder if a network of people involved with local support groups could be formed such that getting information distributed (assuming a one or two people in each group are active) - Via Clinics/GP surgeries...

To give an example of what happens when isolation isn't enforced - Iceland seems to have a problem where 2 french tourists tested positive and failed to follow isolation proceedures and its reported to have lead to more than 100 infections...

If he was a business man he would be praised for his effective sales strategy rather than be called a malingerer.