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Moved post I emailed the LongCovidSOS group*, after noticing one of their members on the Independent Sage weekly YouTube video last week. Maybe there are people here who have contacts in the Long covid community? *Email to LongCovidSOS group [info@longcovidSOS.org] "Really just contacting you...

Good to hear it's working but you wouldn't believe it i.e. based on the media coverage here.

Decide to look at the number of cases in Australia, after all the media coverage - no disrespect, but they made me a laugh - 200 cases a day ---50K in the UK.

Yea because the diagnostic tests are crap* and people haven't picked up a point that @Jonathan Edwards made i.e. if the proposed causal autoantibodies are lowered by rituximab then why didn't people recover when treated with rituximab? OK there could be a few autoimmune cases of ME/CFS i.e...

Probably one way to "understand" post treatment Lyme disease is to look at the introduction to this paper: " Abstract Background: Neurologic Post Treatment Lyme disease (nPTLS) and Chronic Fatigue (CFS) are syndromes of unknown etiology. They share features of fatigue and cognitive dysfunction...

“During this project, we will be developing a Core Outcome Set (COS) for long COVID. This is an important step in deciding best how to measure improvement in this disorder and optimise the ability to combine and compare data across research studies.” – Dr Timothy Nicholson, King's IoPPN...

Very interesting insight i.e. "NIHR was specifically set up to lower the standards supposedly required by MRC- to let politically useful projects through and find ways of justifying cost cutting". As someone who has to respond to "challenges" to Departmental policy (not health) recently I've...

I decided to email* the MPs [who are still in Parliament] and who participated in the debate on CFS**. I may have overstepped the mark re "levelling up" ---- I also copied to the secretary of states [Ministers] who fund the "problematic" research and the public accounts committee who scrutinise...

There are probably folks here who were involved in the lobbying surrounding the UK (Westminster) Parliamentary debate on ME [Thursday 24 January 2019- official record "Hansard"*] - I'm sure there are fine words in there - no mention of funding flawed research and then defending it i.e. even...

I've noticed that these MPs recently asked Parliamentary Question on ME/CFS so I've emailed them to see if they'd ask a further question. [Claire Hanna, Rachael Maskell, Emma Hardy, Caroline Lucas]. "Hi, [family member] has disabling fatigue, so I do some lobbying re ME/CFS. Claire, asked a...

Hi I've just emailed my MP* [Claire Hanna - Siobhán is her assistant]. If I can't get Claire to ask this question then can anyone else think of an MP who might help? "Claire/Siobhán, I should have provided this in my reply yesterday* So maybe a question highlighting your (Claire's) previous...

Thanks @Trish Need to make the effort to look at this. EDIT - yes, page 317 has a neat summary of the problems: "The majority of the evidence was of low and very low quality. The main reasons for 24 downgrading were risk of bias, indirectness and imprecision. There was a lack of blinding in 25...

@Trish you seem to keep up with the NICE Guidance review - do you have a source for the statement that NICE considered PACE etc. to be "low quality" evidence i.e. due to these studies being unblinded/inadequate blinding and using subjective outcome indicators? On the plus side @Snow Leopard...

If the Indian variant has a reproductive rate of 6, in unvaccinated people, and the vaccine isn't 100% effective at preventing transmission, then it looks like vaccination alone isn't going to eliminate the virus in the UK. See some countries are vaccinating people aged 12+, that might help to...

Yea frankly cheeky to say "peer reviewed" - "low quality" is what NICE considered it to be So what they should be saying --- acknowledge NICE findings ---- steps are being taken --- So maybe the next question would be along those lines - does secretary of state accept NICE findings that...

Merged thread Here's the question* my MP Claire Hanna asked and the response: *"To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure that clinical studies for (a) ME, chronic fatigue syndrome and (b) long-covid are conducted using appropriate outcome...

Reminds me of Derya Unutmaz work on MAIT cells in the gut lining - not sure what became of that Also, James Baraniuk patented an idea that leaky junctions in the blood brain barrier were relevant. @Andy posted a link to a study which looked at LPS recently (last week?) EDIT - there's been a...

There's an excellent post by @Jonathan Edwards here* I'm not optimistic about this holding up (although Jonathan's comments might be entertaining - I have visions of fur flying).I'd be happy to be proved wrong though! I'm interested in @strategist comments - I wonder if the European Union...

Yes, Australia and New Zealand certainly appear to be able to eliminate SARS-CoV-2 but I'm in the UK - I can't see it being eliminated here - so it's vaccination and continue to reduce contacts, watch out for variants which can escape the vaccine ----

The NICE review, of it's guidance re ME/CFS, recently categorised the evidence from unblinded trials, with no objective outcome indicators*. as "low" - grateful if someone could provide a reference. In a sense that is a line in the sand i.e. if NIHR fund a ME/CFS trial which is unblinded, and...