Regarding that Newcastle Hospital article
Interesting that there is such as recognition of fatigue as being such a troublesome symptom.
Julia Newton is part of the Newcastle-upon-Tyne NHS, she ran (runs?) the fatigue Clinic there and seems to be seen as an expert on fatigue in that region. On...
High-dose coenzyme Q10 therapy versus placebo in patients with post COVID-19 condition: randomized, phase 2, crossover trial 2022 Hansen et al
This is a good recent double blinded study of CoQ10 (500mg/day) for Long Covid - they didn't find any benefit, and, remarkably, clearly said so.
From...
Cells from a muscle biopsy: 19 GWI; 17 controls
14 matched pairs for a subset analysis
There was some missing data - actual numbers contributing to reported means isn't reported.
There were 19 different assessments made of mitochondrial function (results in Supplementary Table 1); hsCRP was...
I have only read the abstract.
It's not looking very positive. There was no benefit on the primary outcome (General Self-rated Health), for either 100mg/day or 300mg/day.
They did some post hoc subsetting, reporting that 100mg/day was associated with a significant benefit, in males. I don't...
https://direct.mit.edu/neco/article-abstract/26/11/2594/7999/Coenzyme-Q10-Benefits-Symptoms-in-Gulf-War?redirectedFrom=fulltext
paywall I think
Abstract
We sought to assess whether coenzyme Q10 (CoQ10) benefits the chronic multisymptom problems that affect one-quarter to one-third of 1990–1...
Acetylcholinesterase inhibitors might be the common factor in illnesses like GWI, including in ME/CFS and chronic ciguatera.
Ref #9
Golomb, B. A. et al. Coenzyme Q10 benefits symptoms in Gulf War veterans: Results of a randomized double-blind study. Neural Comput.26, 2594–2651...
Wearable technologies that monitor Parkinson’s symptoms recommended for use by NHS in England
NICE recommendations
I think we need to prioritise research on the use of wearables in ME/CFS clinical care. I note that Parkinsons UK funded the initial studies on the feasibility of wearables...
Thanks for the discussion @Michelle, it has helped develop my opinion.
I agree.
I've just posted on another thread an announcement from Parkinsons UK about a decision by NICE earlier this year to approve 5 remote monitoring devices (smart watches, ankle monitors etc) for clinical use for...
Wearable technologies that monitor Parkinson’s symptoms recommended for use by NHS in England
Feb 2023
https://www.parkinsons.org.uk/news/wearable-technologies-monitor-parkinsons-symptoms-recommended-use-nhs-england
"NICE have conditionally recommended 5 remote monitoring devices for...
The cost of a basic consumer fitness tracker is pretty minimal (less than the cost to the government of an hour of individual CBT, I expect), and they often can run for two weeks without charging. They are much less hassle than trying to write down how much activity is done.
I think they could...
Dr Schloeffel is ...alternative. The link in the quote below takes you to a discussion when his appointment as Emerge's Medical Director was announced.
I'm still despairing about this. At a time when we need a stringently scientific medical person representing Emerge to take on the BPS crowd...
I guess this is the difference between our viewpoints. I see wearables as currently adequate technologies that can be incorporated into research and clinical monitoring right now. They may not be perfect, but they are better than subjective questionnaires where people are asked to summarise...
Indeed, the point is that step counts may not differ between healthy controls and people with ME/CFS at the milder end of the scale. What differs is what else can be done in the day, including sitting upright, talking with others, cognitive work, standing; and the capacity to increase physical...
Thanks for your post. I think though that this study illustrates clearly that there is technology available that does a good job of distinguishing people with ME/CFS from healthy controls and that it is not at all problematic in the research or clinical setting. Yes, we need more research to...
Just on this a bit further because I'm so astounded that this has happened. $50 million in funding for Long Covid research and it appears that BPS proponents like Lloyd and the RACGP have unfettered control of its allocation. It's a disaster waiting to happen.
Can an organisation start a...
It's about how the activity levels are measured. Lots of healthy people with sedentary jobs might only walk 4000 to 5000 steps a day. A person with ME/CFS mild enough to participate in a trial that requires going in to a clinic might also do this many steps, in order to meet the bare minimum...
The composition of that panel is utterly horrifying.
There is supposed to be at least one consumer representative. As far as I can see, there is only one out of the nine:
She therefore presumably has no specific experience of post-viral conditions. From my experience on a funding panel...
Evidence of exactly what you say is the strong support given by four Colleges of Medicine for the Lightning Process in their submissions to NICE during the guideline development process. Brian wrote a very nice blog about it
Self-styled medical leaders defend neurolinguistic processing as legit...
Terrific response @ME/CFS Skeptic.
Further on pacing
Most people with ME/CFS do eventually adopt some sort of energy management or pacing over the first few years that they are ill, because the consequences of 'exceeding the energy limit' are so disabling. Therefore, most of the people...
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