Search results

Just to be clear, again, the words in that post aren't my words. They are Jeannette Burmeister's. I imagine that some people find maligning and gaslighting patients both fulfilling and rewarding; the likes of Walitt don't make me wonder much about that.

Is this the update you mean @Dolphin?

That study was hopelessly flawed in its cohort matching. The HV had a big percentage of people over 50; the ME/CFS cohort had a big percentage of people between 18 and 30. And even with that age skew, there was no difference in Beighton scores. The following diagram is from a nice 2017...

There's some other good content on her website too. People might like to check out the 'Watertight Diet' under the "More" tab on the right of the home page.

Yes, I liked it too, plenty to think about. And, on the other side, there's commentary about how patients often contribute to creating celebrity scientists or celebrity clinicians. And how that often doesn't end well.

I'm not saying I believe all or even any of the postulated hypotheses. But, there may be possible issues with collagen or associated tissues that are different to the 'gross collagen abnormalities' that you are thinking of. There could be something only slightly related to collagen's...

The preceding posts have been moved or copied from the Paul Garner thread

Five pages of posts have been split into a new thread: 'Curable' mind-brain training app and ME/CFS, including the role of Fiona Symington

Just as an aside - I wonder if we have a thread the KCL Covid Symptom Study Biobank? They are in the business of selling participants' anonymised data: I have substantial concerns about how effectively participant data would be anonymised. The Biobank wants to link samples and data from the...

As I'm sure you know, there are some hypotheses that have been put forward: Some of the proteins found to have altered levels in ME/CFS have some relationship with collagen - but we don't have good replication of the findings, and then there is the issue as to whether the protein actually does...

couldn't help thinking of poor rubbish disposal processes in another intramural entity... Is there anything in particular that led you to this paper @SNT Gatchaman, or is it more just an area of general interest where understanding of processes seems to be improving? It reminds me that we...

Just to be clear, that quote of "Hutan" above is actually a quote of Jeannette Burmeister's X thread. I don't hate SEID (I had to google to double check the name - Systemic Exertion Intolerance Disease), and the diagnostic criteria with that name is actually my favourite. But, Jeannette is...

I managed to send something in yesterday, a list of studies I'd like to see and a list of research characteristics that I don't want to see (the Walitt et al paper featured heavily as an illustration of various research characteristics that I don't want to see). It was inadequate, other stuff...

Professor Dinesh Bhugra is on the Board of SANE. He is from the Institute of Psychiatry KCL, as is Wessely. Bhugra is past president of the Royal College of Psychiatrists (2008-2011), as is Wessely (2014 to 2017). etc

It's a very good article but there are some errors. It falls into the 'research proves a whole range of biological abnormalities' trap. Also, very sadly, New Zealand has not revised our guidelines. The link there is to paper by ANZMES. Good to see Andrew Lloyd's conflicts of interests set out.

From a Members Only thread about how Alem is doing:

That all makes sense - so still probably an artefact of the in vitro sample preparation, with the different prevalence in sick and healthy people due to the presence of molecules associated with infection or inflammation. If that wasn't the case, the microclots would presumably be able to be...

The announcement of a dedicated ward for young people with severe ME/CFS and similar diseases, from the ME/CFS Research Foundation, seems important for the care of people with ME/CFS in Germany and perhaps beyond: Germany: ME/CFS Research Foundation

That link is to quite a long and detailed article - excerpt below. It sounds as though a great deal of innovative work is being done. And it could have a tremendous impact. I hope the projects are in good hands - it appears from this that they are.

A Liverpool Hospital team: So sounds as though they used software to identify the micro clots, which removes bias. The association with sepsis looks pretty weak, it's only just significant (p=0.44). But the complete absence of micro clots in healthy controls versus being present in 42% of...