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Could we do a letter addressed to the website's content manager supported by Ron Tompkins or someone else from the Harvard ME/CFS centre?

I wake up with a dry mouth when I'm "crashing". Not so dry on better days. I always drink as soon as I get up and a small amount of water before going to sleep.

Hi @Andy Good work today. After tuning into the webinar today, I have one suggestion: A prominent timeline or progress chart on the website would really help. Something that clearly shows what stage we are at. People are asking about the questionnaire, whether they've missed the application...

I'm not sure if it's new. Someone on Facebook must have found and read the page, and posted about it on one of the groups.

How strange. This wasn't coming up before, but now it is...

https://www.health.harvard.edu/a_to_z/chronic-fatigue-syndrome-a-to-z This could really do with being challenged. Harvard has had some good material on ME/CFS over the past couple of years, especially with the launch of the Harvard ME/CFS Collaboration. I wonder if it's worth trying to get...

I know we are going off topic a bit here, but you summarised my thoughts and experience. I feel as though PEM is often described as something that is well understood and characterised, when it isn't. I seem to have a semi-regular fluctuation of symptoms that is not fully-described by my activity...

Agree. These interventions are fine, but not when they come in lieu of a proper acknowledgement of and solutions for the problems you mention.

Exactly. I hope we can all agree that even if the interventions here are preventative, framing Covid-19 as a lifestyle illness is anti-scientific and actually quite insulting. It seems others on Twitter have picked up on this.

You could be right, but that's not explicit in any of the material.

This looks quite problematic. Already framing Covid-19 as a lifestyle disease, with GPs being prepared to prescribe physical activity, mindfulness, and yoga. https://rcgpportal.force.com/s/lt-event?id=a1U1i000001nsCLEAY&site=a0d0Y00000AeOP6QAN A one-day interactive online conference on...

I have tweeted the article author. It's not a big deal but it would be nice if it was edited. It's likely that someone else other than the author wrote the sub-heading.

And Francis Creed is currently undertaking a meta-analysis with Peter White. Can't they just enjoy their retirements? https://s4me.info/threads/in-progress-a-systematic-review-meta-analysis-of-the-incidence-of-and-risk-markers-for-cfs-and-me-in-population-studies-2020-white.15362

Is this new upload to Vimeo the same film mentioned in the early messages in this thread, from 2018? Has anyone watched it?

is it still functional if gene polymorphisms are implicated and there are changes in neurocircuitry!?

I'm wondering if anyone could direct me to previous discussions about what a "null result" might mean for the study. I cannot find what I'm looking for through the forum search. I remember such discussion, possibly last year.

No, I don't think one is sent. Would have been a good idea. However, making that change now might cause more confusion.

Yes, we don't want to confuse people!

I have to say the website looks very smart. Is the MEbiomed website coming down now, or staying up?

If we can supply the Guardian with the press release text, we should be able to supply them with an appropriate photo to use!