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Noticed Alzheimer's gets a mention - it's woefully underfunded but if sleep/wake cycle [orexin] is relevant to Alzheimer's then it should get some funding - should help to move the research on.

Interesting, as well as Younger's research, I assume that the GWAS study should give clues i.e. if this is relevant to ME/CFS - correct? EDIT: @Jonathan Edwards would you expect to find something on an actigraphy/actimetry study if this was relevant?

Slight digress - discussion re AAPG's - including secretariat ship on the Paddy O Connell show - radio 4 [https://www.bbc.co.uk/sounds/play/m000ydnv - 50 minutes from start ish] referencing this article https://www.mirror.co.uk/news/politics/tory-mp-handed-paid-roles-24659796] You may recall...

Just emailed a FOI request to Department of Work and Pensions [DWP] re Nick Ross: "Nick Ross, on his website [https://www.nickross.com/clients/] states that DWP is one of his clients. I wish to know: when you began paying him, what period(s) he has worked for you, and what he was contracted to...

Wouldn't it be better to simply put an actimeter on the patient, check whether they've been able to return to work ---- something objective to measure improvement?

That shows up what a scam it is - one Doctor can prescribe X and it works and another Doctor can prescribe Y [for the same disease] and it works - if you're going down that route then why not give the patients the money [as suggested by @Snow Leopard ] and let them use it to improve their...

Got a response to my request to MPs, who participated in the debate on CFS in 2019, to challenge the Governments continued support for "low and very low" quality research: "I am just mulling how to frame a question which gets a better answer*. It is scandalous to waste public money on poor...

Interesting, in the response to AQW UIN 33370 the Minister for DWP stated that: "The National Institute for Health Research (NIHR) and UK Research and Innovation (UKRI) have invested in research into myalgic encephalomyelitis, chronic fatigue syndrome and ‘long’ COVID-19. All research...

I'm guessing that someone could ask a freedom of information request e.g. asking DWP whether they paid Mr Ross and if so what was he contracted to do --- probably a better way to ask that!

Sounds like what the PACE etc. mob do in the UK - just get funded to do research which provides no useful data.

Was going to say cynic - but wise/observant would probably be more appropriate.

Decided to try emailing the members of the APPG for "Myalgic Encephalomyelitis (ME)" i.e. to see if they'd try to challenge the Ministers who fund NIHR and UKRI. "Hi, I'm emailing you as you sit on the APPG for "Myalgic Encephalomyelitis (ME)". Basically, the issue of the "low, and very low"...

Contacted UK ME Action [https://www.meaction.net/countries/uk/]. Hi, ---- I recently emailed MPs, who'd participated in the Parliamentary debate on CFS in 2019, re the response to a Parliamentary Question* which stated that "--- All research commissioned by the NIHR and UKRI is subject to...

Interesting I had vaguely wondered if the APPG for ME had been resurrected - has it? The last APPG for ME seemed to have a pretty torrid time - PACE, Action for ME acting as secretariat ---- EDIT - found the APPG for "Myalgic Encephalomyelitis (ME)" here...

This seems to make lobbying more difficult e.g. you'd need to have someone in these constituencies who is prepared to make a complaint to their MP - a proxy if you like. Any suggestions on how to identify someone who'd be prepared to make a complaint in these constituencies? I could try ME...

Hi just had an email from Darren Jones [MP for Bristol North West] "Please can I ask you to supply your full address and postcode? There is strict Parliamentary Protocol that dictates MPs can only log and progress case work requests on behalf of constituents. I will therefore need this...

I haven't read the study being discussed - here's my "usual" rant! There's a thread on a study which compared actimetry with self reported questionnaires. Questionnaires overestimate activity/improvement if you like. Real world scenario: You work in policy and you are part of a team overseeing...

Yea recall a UK charity which used to run stories "Miss X [glamourous picture provide] completed her degree despite having having ME--" so, those of us with children unable to complete their degree due to ill health, disabling fatigue --- well unlike the featured Miss X they obviously weren't...

Might explain why she didn't reply to my emails. I kind of had a feeling she mightn't wish to start challenging researchers [for doing low quality research] - being in the academic field herself but I guessed it was worth a try. Thanks for the heads up.

Hi, I think we should try to build links to the Long covid community. Long covid may help to decontaminate poorly understood diseases like ME/CFS - thereby helping us! I've emailed "Dr Nisreen Alwan, Associate Professor in Public Health," [Southampton University] twice but haven't had a reply...