Search results

Not about ME at all but some of the issues discussed could be interesting since IL-6 pops up in some ME studies. Looks at effects of exercise (eek!) and of an IL-6 receptor blocking drug (with and without exercise) and how IL-6 signalling influences various metabolic and other processes like...

Don't worry @Hutan. No crying happened. In fact I couldn't help laughing at the the suggestion to consult my doctor. Please doctor, my reaction times are slow, do you have a pill for that? And how often do you get a test result that says something is wrong with you?! I did the test when at the...

Actually, if I was less severe and if I happened to live near Massey I would register for the study out of curiosity, to get more detailed information. Having knowledgeable patients engage could even help improve study design, if not for this study (protocols may already be fixed) then for...

I'm speculating due to insufficient information but it looks like they're intending to do test 1 up to threshold to establish where the threshold is. Then later do a 2-day test below threshold to see if patients can replicate their VO2max or whatever on day 2. There are lots of confounding...

The devil will be in the detail, for example it's not really clear what a “graded exercise test” is. Do they mean a gradually increased intensity during a CPET, or a programme of GET followed by a CPET? However, at face value this does sound to be in line with the ideas of the Workwell people...

@Hutan posted this online tool to assess reaction time in another thread: http://www.sleepdisordersflorida.com/pvt1.html#responseOut Just tried it and don't know whether to laugh or to cry at the result. I tried very hard and achieved an average response time of 694 msec. This resulted in the...

Another thing that happens in MS is that many patients initially have the relapsing-remitting form of MS. This often changes into the secondary-progressive form after about 15-20 years. Another kind of two peaks pattern. This would support the idea of increased susceptibility to certain...

Finally finished watching this. Expanding a little on @Trish's summary. Parts of the video are very interesting. Annoying though: camera is angled so the slides are cut off so only the left edge is visible. Was anyone from here at the talk and took photos by any chance? The first 40mins or so...

At the risk of repeating what others have already said in this long thread: This is a persistent fatigue study, not an ME or CFS one. Oxford, 'tiredness' instead of PEM etc. As a persistent fatigue study it may well have some value and for a persistent fatigue study using Oxford criteria makes...

Yes, JY clearly stated that the neuroinflammation he found wasn't the 'start' of ME, he doesn't know what causes said neuroinflammation in the first place. There's another take on neuroinflammation discussed in this thread...

After trying to skim read this article I was forced to diagnose myself with an acute allergy to the word 'stress'. This really ought to be added to the list of possible ME symptoms. Like for ME, there's currently no cure for this allergy but symptom reduction may be achieved by placing heavy...

Bummer. Sneaky!

After a quick scan of their website (https://solvecfs.org/eligibility/) I wasn't clear about whether the You + M.E. registry was a US or an International initiative so sent them an email enquiry. Here's their reply: International. Pre-register here if interested...

Good point @Michiel Tack. A clear definition of pacing is important. I've encountered too many descriptions of “pacing” that on closer analysis turned out to be forms of GET. Very confusing and misleading. One issue I have with this paper – though overall it's not bad - is that it gives the...

Aaarrrgh!!! Sadly nobody here will be the slightest bit surprised that there are doctors who insist on treating physiological symptoms as psychological and who consequently refuse biomedical investigation and treatment. The reported cases are particularly appalling examples; sadly even that no...

Before thanking anyone else I'd like to thank a certain very determined dog here, and very loudly, too: THANK YOU @Webdog !!!

A few thoughts and questions on the presentation: Question: Does anyone know if there is, or will be, a paper published about these findings? They found quite a number of mutations that were more frequent in patients than controls. However, numbers were low and I wouldn't be surprised if some...

The video mentioned in this other thread by @BeautifulDay may be of interest to anybody interested in genetics and mitochondrial dna...

Recording appears to be on Facebook now. Haven't watched it yet but video started playing ok after a few seconds of a confusing message saying live stream will start soon (confusing because live stream long past).

From the MEISS December newsletter (bolding mine). Not exactly sure what it means but it appears to be saying that currently ME patients are not eligible for home help? Unwieldy site but might be worth adding a few ME-disability-specific suggestions, just to get ME on to their radar as a...