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Unfortunately (or fortunately, depending on how you look at it) this story is not true, and based on misinformation. Annika Wells has made public that she has an autoimmune condition and that she won’t name her condition publicly for privacy reasons...

Thanks, Trish. It’s unfortunate that the episode is so long (both for me recording it, and for everyone listening).

Thanks, Ravn. I’m glad you liked it. The interview was recorded a few weeks ago, so I’ve recovered now. :) I included the PEM voice addendum because I thought it would be useful for non-MEeps to hear the real impact of exertion on us. Lots of patients told me it made them cry. I think because...

Recently I was interviewed for Emerge’s new podcast series. I was asked about my life with ME/CFS, what I’ve learned, and how I cope. I did my best to represent the lived experience of ME/CFS, and the challenges we face. The interview took its toll, as was expected. At the time, I posted on FB...

The first round of the Medical Research Future Fund grants for Long COVID were opened today. This is $14m of the allocated $50m for Long COVID. The emphasis is definitely not on biomedical research. Depending on what projects are funded (applications close Nov 1), it could be that none of the...

Not to mention the fact that they still refuse to acknowledge any possible risk of harm.

The review of the NICE guidelines got some media attention here, in an online medical rag. It’s predictably bad. (Apologies if this has already been posted elsewhere!) https://www.medicalrepublic.com.au/aussie-gp-slammed-for-critique-of-chronic-fatigue-syndrome-guidelines/96284

Given there’s a typo on Daniel Forrest’s listing, it’s not possible to tell if it’s meant to read “affected by” or “previously affected by”. It’s possible that none of the committee currently experience symptoms. It’s a huge concern.

Does anyone know what this means given that applications for the CRCs RFA aren’t open until next month? How did Hanson get this funding? What does that mean for the other CRCs?

I haven’t been around much lately, but just wanted to say that Emerge wrote to this group, highlighting the issues with the study. We haven’t heard back

Apologies if this has already been posted! I couldn’t find it. This is a recently published textbook on Long COVID. It is described as an “authoritative medical reference on the various ways in which Long-COVID presents and an in-depth discussion of its mechanisms and potential therapeutic...

So much about this is frustrating. We knew it was coming, but still frustrating. But what I’m finding infuriating is how much the PACE trial is included in this analysis. It’s everywhere throughout the GET section. In some subsections (pain and 6MWT) PACE is the only source of evidence...

Thanks!

Yes, we really do!

Hi everyone, I’m interested in any research or surveys which track the impact of a COVID infection on ME/CFS symptoms and/or functioning. I’ve found this Dutch survey, but the results are focussed on the impact of the pandemic more broadly, rather than the impact of a COVID infection. Does...

LDN helped my cognitive functioning and sleep and reduced my pain and parasthesia. It’s been good for those symptoms but I’m still mostly bedbound, so hasn’t helped physical functioning much.

For anyone interested, someone sent me an article from an old Emerge journal. Emerge’s journal is also called Emerge (yes, confusing! The journal was named back when the org was called ME/CFS Victoria). The 2013 journal included excerpts from a 1994 editorial from the journal that explains why...

The use of the butterfly definitely predates the Whittemore Peterson Institute.

I started out on this quest sure this was going to be something so obvious that I had just failed to notice over the years. Glad I’m not the only one who has struggled to find the answer!

Interesting! I didn’t know that. Interesting that even in that discussion, it wasn’t being considered for an historical reason. I remember that child’s drawing of the butterfly tied to the stone too. So powerful.