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I know I sound like a stalker but if anyone is interested: the original post about becoming a patron has been deleted both from the MEA website and Facebook. This is what you can read in the comment section of today's FB post: ME Association limited who can comment on this post. (I'm a follower...

ME Association Trustee’s Statement re: the appointment of Professor Findley as Patron of the charity "Following the appointment of Professor Findley as a new patron of the charity on 06 October, and while we have received a good number of messages supporting the decision from both charity...

Medical News Today: WHO issues clinical case definition of long COVID I believe the WHO should also create a case definition for stillnotgettingitis, a terrible chronic psychosocial disease so many unfortunate doctors suffer from. From the article: Dr. Al-Aly, the chief of Research and...

I think the proponents of craniocervical instability (as a reason for ME/CFS symptoms) say that infections can break down collagen (I think there is a study about this somewhere). That's another "connection". However, @Jonathan Edwards said earlier that there is no reason why that breakdown...

When I had that major knee surgery at the age of 20, I told the nurse about the pain I felt afterwards (literally just days afterwards). Her reply: you don't know what real pain is. So at least her logic seemed to be that it cannot hurt too much if you aren't old enough to have experienced...

'These people aren't crazy': How long COVID could help sufferers of other little understood syndromes From an Australian news source, focusing on Ross River virus and its long-term effects. Personal stories from two patients (one diagnosed with ME/CFS) and a virologist from Griffin University...

A medical mystery, the neurology of long COVID comes into focus An article about the theories surrounding long covid, with occupational medicine specialist Dr. Greg Vanichkachorn, medical director of the COVID-19 Rehabilitation Activity Program at Mayo Clinic. Excerpts: One emerging area of...

I think it is generally quite good, you should read it. :) Hattrick made some interesting claims though, for example that Virginia Woolf etc probably suffered from ME/CFS too and I'm not sure if this really is a serious hypothesis. Or at least this is new to me but it also seems to be part of...

Alice Hattrick is an author who lives with ME/CFS and has recently published the book "Ill Feelings". Alice Hattrick was aged eight when their mother collapsed with mycoplasma pneumonia. The author – who prefers the gender-neutral pronoun “they” – found her on the kitchen floor at their home in...

The New Zealand Science Media centre asked some experts about the new case definition: Long Covid Gains Official Recognition – Expert Reaction More specifically: - Dr Anna Brooks, Cellular Immunologist and Senior Research Fellow, Maurice Wilkins Centre, University of Auckland, who alse mentions...

Really long interview with Éva Rákóczi, head of the infectology-rheumatology department of the long covid clinic at the University of Debrecen (this was the first long covid clinic in Hungary). This was published on ElitMed, in the Hungarian-language Lege Artis Medicinae journal. The...

I saw that but couldn't find this there. There are symptoms in that guideline tweet that are not mentioned in the case definition publication at all (not even as "other symptoms" like PEM): orthostatic intolerance, POTS (only "tachycardia" is mentioned), but also things like dysphagia. So I was...

So from what I understand, a 70% consensus was necessary for a symptom to get included in the case definition. For PEM it was 67%. Damn, very close! So right now it is just one of the other symptoms. However, the authors say the case definition is probably temporary and may change in the future.

Is there a link available to that WHO Post-covid 19 condition interim guideline mentioned in that tweet? I tried to look it up and couldn't find it. Is it something that has yet to be published and that was a quick peek in advance?

Research in connection with post-acute sequelae of covid (they are just recruiting): Google translate: Have you been through Covidon? Help assess how the disease affects brain aging! "The ELKH Natural Science Research Center and the Research Institute for Experimental Medicine are waiting for...

Just as a sidenote: Raelan Agle is also some sort of ME/CFS life coach (which is based on her own recovery). If you take a look at her YouTube channel (https://www.youtube.com/c/RaelanAgle/videos), it is full of recovery stories (and mind-body connection etc). I remember at some point she even...

Medpage Today: Collins to Step Down as NIH Director at Year's End We get mentioned: Members of the myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) community panned the NIH and the research community in general for not taking the disease seriously enough, but Collins disagreed...

I'm not sure this is the right thread because this is not necessarily an "attempt" but a patient's story. It first appeared yesterday on a local news site, so I didn't want to share it (and because it is still someone's personal story) but now it has been posted on the website of a university...

Sorry if this has already been mentioned but I took a look at Dr Gilete's website because someone recommended it in my group and the part in bold is now changed, the ME/CFS part has been removed: "He is also pioneer in the treatment of those cases who fulfill criteria for CCI and/or AAI." Also...

BBC Science Focus Magazine: What is brain fog? A neuroscientist reveals what causes it and how to get rid of it ME/CFS is briefly mentioned, as well as long covid, brain fog after chemotherapy and menopause. The author starts with talking about some potential biomedical reasons, then...