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It is very hard to understand what led to this document being published. Sonya's been around the block a few times now, her understanding of ME/CFS seems to have grown over the years and she is reliably coming across well in interviews. So, was she just not aware of the detail of the document...

Great letter @Trish. It's bloody annoying when we have to use energy trying to fix mistakes that patient charities make. There are more than enough things to do in advocacy without our charities actively contributing to the misinformation and stigma. I really hope Action for ME listens and...

I don't understand the abstract. It was sounding like a useful system for assessing fatigue from various sensors. Something like that could be useful for a study in ME/CFS, e.g. to quantify what happens after an extended period of walking when it seems like it takes a lot more conscious effort...

From eAppendix 3: This paper gives us detailed Tables 1 and 2 (telling us how many tests were the same or different at the first and the follow up visits. But, that's almost meaningless. What we really need is the actual data. For instance I want to see the actual copeptin data...

Copeptin? the following is mostly from Wikipedia I've gone on about how I routinely get a high shock index and how, for me, a higher shock index correlates with symptom load. I don't know why it isn't measured and reported in ME/CFS and Long Covid.

I approached this paper with trepidation, wondering what fresh hell Walitt was visiting upon us. Perhaps he didn't get the right to decide the wording this time. The study only had 7 participants, and so far it doesn't look as though they found one thing that might explain the long Covid...

Ah, the famous In-fernal Cycle, with all those perpetuating spores...

You might think that perhaps the authors live in some part of the world that is under-resourced, where a "multi-component long COVID treatment program based on central sensitization" hasn't been tried before and where they have not had the benefit of exposure to informed ME/CFS and Long Covid...

Well, there's this paper that the forum initially missed: Post-Covid-19 Conditions in Children, 2023 by Hahn et al. with its message of 'Long Covid; nothing important to see here, move along' Fortunately, there was a retraction notice later on, so that we caught up with it. :) RETRACTED...

It really is. And count the, well, what do we call them? Lies? Evidence of deluded thinking? Misrepresentations? 1. "Innovative" - nope, just the same old stuff 2. "Central Sensitization is a primary mechanism for the development of Long COVID symptoms." - no, there is no evidence that allows...

And we've asked them in multiple ways - letters, formal complaints, communication via back channels, face to face conversations, and to the Board generally and individual members, to the Chief Editor, to Hilda, to specific Cochrane office holders including people we know personally. All we get...

On the sIL-2R finding: They tested a lot of things (65), IL-2R on the left does look interesting. They investigated the impact of SIL2R and IL-2 (separately) on the oxygen consumption rate of a type of muscle cell in the Seahorse machine. Figure 4 certainly is interesting. That's a big...

On the results: Activity At this early stage of the illness, muscle size, fibre composition, and muscle strength were still similar to the healthy controls. Three participants (27%) reported no change in activity after infection, of which two had been highly active, and one was intermediately...

On the methods: People were eligible to participate as soon as 4 weeks after the Covid-19 infection, and they just had to report ongoing fatigue. The average time after the positive test for the acute illness was only 59 days. And the healthy controls were mostly historic pre-pandemic samples...

Thanks MIJ and SNT This is a paper from mostly a University of Kentucky team, with varied backgrounds but a substantial focus on muscle biology. NIH funding They appear to have started with the idea that there is something in the blood of people with PASC that causes mitochondrial dysfunction...

Which again goes to the problem of 'is that exercise test enough to cause PEM or general deterioration, which would be the reasons why activity would reduce?'. The people with (ME)/CFS who volunteer for these studies are not put off by the prospect of 8 minutes or so of cycling, because they...

That's a manipulative survey. Shame on them, when they know that the patient group they serve has been harmed by manipulative surveys.

Article on the research In particular, I note this "The research team has a study underway that could shed light on the persistence of these symptoms in individuals experiencing long COVID, including the long-term impacts on neurocognitive behavior and memory loss."

Link - open access In mice Venkatramana D. Krishna1, Allison Chang2, Holly Korthas3, Susanna R. Var4, Davis M. Seelig5, Walter C. Low2,4*, Ling Li2,3* and Maxim C. -J. Cheeran1* Minnesota team Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2), the etiological agent of COVID-19, is...