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There are ways to artificially inflate membership figures; not deleting the multitudes of spam applicants that flood in every week for example. Not saying that's what other forums do, just that reports of total members, or of active members at a particular time in a forum's history when many...

That's better, @Andy, thank you. Could the first paragraph that says it is a British forum please be replaced with something like this (taken from the content of the forum welcome page) Science for ME is an independent, patient-led, international forum for people with ME/CFS and similar...

Umm "as there has not yet been a formal decision to merger the charities there has not been specific consultation with ... members". But surely once there has been a formal decision to merge(r), it's too late to consult with members in any meaningful way? It's not my country of course, but...

I agree @InitialConditions. I've expressed a similar concern about Emerge in Australia getting into the business of providing clinical care. Indeed I expressed a similar view when my very under-resourced regional patient support group wanted to try to do that too. It seems to be a very...

There are more posts and a video about Casey Stoner here: Australia: Emerge

All Covid-19 cases were mild to moderate. The authors report that NfL values are known to increase with age.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7345451/ Markus Ameres, Susanne Brandstetter, Antoaneta A. Toncheva, Michael Kabesch, David Leppert, Jens Kuhle, Sven Wellmann Germany and Switzerland (doesn't have an abstract) Even though the coronavirus disease 2019 (COVID-19) affects primarily...

47. Ameres M., Brandstetter S., Toncheva A.A., Kabesch M., Leppert D., Kuhle J., Wellmann S. Association of neuronal injury blood marker neurofilament light chain with mild-to-moderate COVID-19. J. Neurol. 2020 doi: 10.1007/s00415-020-10050-y. [PMC free article] We don't have a thread for the...

This is an interesting paper, not least because having a method to evaluate neuronal damage in neurological conditions like MS and Alzheimers is a game changer. For example: NfL was measured in a recent Italian study of Long Covid, but was only identified in 1 out of the 10 cases. It does...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7700209/#B47-biomedicines-08-00523 Abstract Blood neurofilament light chain (NfL) is a marker of neuro-axonal injury showing promising associations with outcomes of interest in several neurological conditions. Although initially discovered and...

This 2020 paper: Blood Neurofilament Light Chain: The Neurologist’s Troponin? Thebault et al suggests that the techniques to pick up the low levels of NfL in blood (as opposed to CSF) have just been developed. So, it is possible that there was some nerve damage at the onset of ME/CFS...

Authors: Elisa Mantovani, Sara Mariotto, Daniele Gabbiani, Gianluigi Dorelli, Silvia Bozzetti, Angela Federico, Serena Zanzoni, Domenico Girelli, Ernesto Crisafulli, Sergio Ferrari & Stefano Tamburin All from the University of Verona, Italy - most with a neurological or medical background. I...

As annoying as the BMJ's mis-representation of facts is, it seems to me that the BPS gang have been rather short-sighted in taking on NICE. I can imagine that those independent people appointed to the guideline committee won't be thrilled to have it suggested that (assuming things are as we...

From the Clinical Trials register - the supplement is branded, and there was an objective outcome (HRV) which was not mentioned in the study, and the promised autonomic function results were also not reported. It looks as though this team has another trial underway, also aiming to provide a...

From the article that Rvallee linked: And from the article about the HAVANA act: I imagine Gulf War illness sufferers might have something to say about that.

This thread has some discussion that seems relevant to this topic: Hypothesis: Mechanisms That Prevent Recovery in Prolonged ICU Patients Also Underlie ME/CFS: 2021, Stanculescu, Larsson and Bergquist

Thanks for your input @CBS. I take your point that identifying a significant level of misdiagnosed endocrine patients among people with ME/CFS labels is a worthwhile goal, and I personally am ok with the use of animals to help with that when necessary. But, there may be some alternatives that...

I am disappointed that he isn't going to appeal; from the little I know, the decision seems very unfair. Dr Shepherd's decision about appealing may not also mean that he does not want organisations to protest the decision. But I can see that it could be a distraction at the time when we may...

I'm not impressed with the uncritical acceptance of published findings in the literature review. But I do think this paper is interesting. To me it looks more like they may have uncovered some misdiagnoses in this ME/CFS cohort, or, at least, some co-morbidities that might be contributing to...

Posts relating to the ivermectin treatment of Covid-19 have been moved to The biology of coronavirus - Covid-19 - including research and treatments A post of a Piers Morgan tweet has been moved to Well known people with Covid-19 and Long Covid A post about a Danish study of Long Covid has...