Search results

Thanks! My question was partly aimed at trying to identify what kind of studies would be useful to look at retrospectively. For example, would you want proteomics, metabolomics, particular immune stuff, microbiome data...?

If we had a bunch of patients who we knew with certainty were going to have ME/CFS triggered in a month's time and we could then follow them up, what sort of data would we want on them before, during and after the trigger? If we had infinite amounts of cash? And are there existing big studies...

And just crossed with this:

Seriously, I would chip in good money for this guy not just to get baseline data but to be regularly and frequently monitored to catch him when the switch flips. There are Rosetta Stone patients sometimes, such as people immune to HIV, that have allowed science to make great strides...

Couldn't resist setting one up! Here it is.

On another thread, @MelbME and I were discussing whether existing studies of Covid infection or severe physical trauma would allow researchers to pull out the small percentage of cases in whom this triggered ME/CFS, to study the biology of how it develops. This would presumably involve the same...

I can't remember much attention being paid on the forum to ME/CFS arising from physical trauma...

This is interesting because it might not just be an area with parallels - it might be one of the right areas to look. Although most (about 2/3?) cases of ME/CFS are thought to be triggered by viruses, severe physical trauma is one of the other triggers that gets mentioned (environmental toxins...

Worth starting a thread on, to attract the people on the forum who might be aware of/interested in that specific thing?

Wow, that's amazing. Maybe he'd fancy moving to Melbourne.

I wonder whether, unfortunately for the patients in question, Covid offers that opportunity, and whether the data might even already exist, depending on what sort of studying you mean. Covid seems to have been (and still is) a mass-ME/CFS event, with a substantial fraction of people who catch...

I get myoclonic jerks (my shoulders jerk forward) when I lie down and relax sometimes, particularly when my ME/CFS is bad. I once did a two-hour ambulance trip that was beyond my capacity and when I arrived in the hospital waiting room, lay down. Every time I tried to relax my body, I got a...

I hope I'm not repeating an issue that has been brought up before, but I was surprised to see the following as the only descriptions of OI in some of the basic info about ME/CFS given by the MEA, AfME and the NHS (my bolding): MEA: Orthostatic intolerance and autonomic dysfunction, including...

What is it, though? Do viruses such as EBV fire up a bit of the immune system that can take ages to shut down, but eventually do so?

Thanks, Hutan, but what I'm suggesting isn't any sort of association between S4ME and AfME. I'm suggesting that if a bunch of forum members wanted to work together to have input into improving AfME's materials, they could approach AfME and ask if they could be treated as an individual who would...

Thanks, @Ash. I quoted the relevant bits of Sonya's letters to Trish upthread, here, and I don't see anything that would rule out what I'm suggesting. Sonya was inviting individuals to take part but I think this idea of a group acting like an individual and not officially representing the forum...

Can you point me to where they have said that they don't want a group contribution coming from people on S4ME? I'd be a bit surprised if they had ruled out contributions from a group simply using S4ME as a chatroom.

Sonya didn't specify how their review process works, but an obvious way would be for a staff member to write the first draft of each document and email it to each PwME in their consultation group for individual, written feedback. As you say, any individual can approach AfME and ask to be part...

I thought it might usefully feed in but I'll hang fire and will PM you (a bit later).

Just coming belatedly to this thread. Stellar letter, @Trish! I've pulled out quotes relating to how S4ME might contribute to better AfME materials going forward. I'm going to summarise it in my next post and make a suggestion for a way forward.