Yea I immediately thought of Bhupesh Prusty's work. I'm not suggesting that you assume that mitochondrial fragmentation is in fact a biomarker for ME. Bhupesh has been looking for a biomarker for mitochondrial fragmentation --- tome this paper is looking at the same problem from a different angle.
Bupesh Prusty's work comes to mind when you mention dUTPases - but I've no idea if that is relevant to this conversation
https://pubmed.ncbi.nlm.nih.gov/32327453/
Excuse me coming back to this @Snow Leopard I'm thinking of the interests of the ME/CFS community here! Do you think:
"---vascular and endothelial function, particularly peripheral muscular (and brain) capillaries ---" would be useful for ME/CFS?
Bear in mind @Andy that there's a review of questionnaires versus activity monitors (it's available somewhere on this site) and it found questionnaires overestimated activity; the activity monitors used were pretty sophisticated [time spent upright etc.]. This publication might be interesting...
There should be some mechanism for the patient community to input into the policy re funding research. E.g. in this case to highlight the previous (negative) experience and how things should be done now.
Your suggestion re "vascular and endothelial function, particularly peripheral muscular...
I work at a junior level in policy (unrelated to health) and it's a bit like brain storming --- creative ideas i.e. for responses. I'd hazard a guess that the (healthy) person who wrote this was just churning out some fancy words --- the reality is a matter for others, who are unwell, to live...
Unfortunately your concerns are entirely justified and eloquently summed up by @Jonathan Edwards "The vultures are circling - and babbling as they fly."*
Jonathan has also highlighted "the problem with understanding the illness is mostly that it is too difficult to know where to start. People...
I think you've hit the nail on the head i.e. "they're simply feeling guilty".
I have a feeling ME/CFS may benefit from good quality research into Long covid - OK that's probably wildly optimistic!
@Snow Leopard reply is much better but the short answer to me is no - e.g. they are talking of giving Pfizer/AstraZenica (almost) interchangeably in the UK. Also, my impression is that vaccination may be annual (new variants) so it may be a case of a new vaccine every year.
I live in the UK, and have a vulnerable family member, so yes keen to get them vaccinated (and me too). One of the issues would e.g. be ending up in hospital (for something other than covid) and picking up covid when you're there. OK you can limit your contacts to a greater/lesser extent but...
Thanks for the laugh --- skim reading (not in a patient mood) and the words that leapt out were:
"the oils"
The words in my head were Long John Silver-esk ---"the oils"
@lunarainbows probably has the professional background to answer this; I'm don't have a medical background.
I assume that if you're in the public sector [National Health Service] then you'd be at risk of being disciplined by your employer and indeed your (medical) professional body - failing to...
I was going to write that I can't see what the problem is with this guy's research - presumably that's the point i.e. there isn't a problem with his research.
Remember that 5G has been controversial in the UK - for a small number of people it is considered a danger.
If I actually wanted to "protect" my Government Minister then I'd highlight that supporting the CBT, GET, positive thinking --- approach poses a risk. Why, because you could end up being labelled the nasty politician/party. Take forcing someone to do GET i.e. under a threat of removing their...
To be honest I was relying on memory, i.e. when I wrote the post you replied to; also, more generally, I don't followed this issue closely.
I agree you'd need to monitor each participants "baseline" so that you didn't attribute normal fluctuation to the intervention. Also, you'd need to monitor...
Further thoughts on this.
These folks talk about numerous studies all finding an improvement with CBT, GET, positive thinking ---. However, the evaluation of these studies did not rely on objective evaluation criteria (activity monitors --- possibly even mobile phone data to assess mobility...
If I were doing a policy paper on this, one of the areas would be - "Financial" (economic benefit) or some such. So if this worked people who are currently not working (and in receipt of benefits/disability benefit) would be well enough to return to work - savings on social security benefits. So...
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