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"• Aerobic exercise is an activity that increases your heart rate and makes you feel breathless. This is a good thing! Research has shown that a gradual increase in this type of activity can help people recover from CFS. Aerobic exercise includes swimming, cycling, fast walking, or jogging as...

Thanks -my question is why they didn't chase up/replicate what seems to be an important finding? Yea very severe patients are so ill it would appear that they won't survive long - Maureen Hanson showed a slide of Whitney and said this is how severe patients live for years - patients with AIDS...

To state the obvious - my knowledge is very limited. Would you expect to see changes in mitochondria i.e. visible on an electron microscope? Also, Ron seems to be interested in proteins which transport manganese into the cell & into the mitochondria - would you expect changes in mitochondria if...

Thanks laughing - just noticed the text [on the video] and yes it's 5 or ten patients!

Hi, around 14.00 - 14.15 minutes Ron mentions something which sounds like "bimer campations" --- OK I often misspell things (!) but anyone got a clue what he said/what he's referring to? Thanks

Possibly some evidence of changes in mitochondrial energy/fuel usage but even if this is true it surely looks like a downstream effect rather than primary cause. Chris Armstrong's work (2015) indicated a change in mitochondrial "fuel" usage - glucose high (less utilisation) and some amino acids...

Listened to the video - some garbled thoughts! 7.30 - 9.30 & 11.15 minutes bit about nitrogen (protein metabolism - urea - some evidence that protein is more important as an energy source in ME/CFS - Chris Armstrong 2015 onwards) Assume that they'll look at the enzymes that are used to...

I'm guessing that if manganese was relevant then the GWAS study should pick up a signal? Haven't watched the video!

I vaguely recall hearing that genes related to eating disorders had been identified. So, you've been dumped on by your genes and this mob turn up supposedly from the caring professions. If they can't do something useful then why don't they just go away? I'm minded of contributions from others...

Yea but we can target Government bodies [NIHR - maybe not right initials] for funding pointless research - as evidence by the NICE Guideline evidence review (page 319 or some such). EDIT - also, I think folks here managed to get an ethics board refusal (re lightning process) - university in...

Think the cost effectiveness consideration relates to treatment. NICE has an upper threshold so if a very small number of people benefit then it may be that a treatment is not recommended since the benefit fails the cost effectiveness test. Lets say NICE upper threshold is £40K/year and the...

Strikes me that they're saying: if you're in the audience and you're informed/knowledgeable then we both know this is shit --- but you're not the intended audience, so don't tell us that were talking shit; if you're in the audience and you haven't a clue well we can just tell you this nonsense...

Just Googled "Retrotransposon Insertion Polymorphism" and found this paper*. Interesting to see the link to immune dysregulation (Lupus and Chron's are mentioned). GWAS, and gene expression, both get a mention* so this could possibly link to the outcome of Chris Ponting's (GWAS) study and Alain...

Firstly - thank you -- great we had people like you on the Guideline Committee Yip pure shit --- noticed the latest trial by Norwegian group incorporated actimetry --- but then some folks design sound experiments and some folks consistently --- Yea for me the indirectness thing just muddies...

Pretty much what I was thinking. I agree that a new Minister, who doesn't have a personal interest/care, is pretty likely to come along relatively soon. However, if the civil servants have e.g. been warned about issues re funding dodgy research then that lesson/memory may persist. Even if the...

I've emailed my MP (Claire) to suggest including Long Covid: "Claire, further thought. Some of those involved in the flawed ME/CFS "research" have patented "treatments" based on these flawed studies - benefitting twice from their low quality research. They've now started targeting Long Covid...

Hi @Hutan interesting spot re elevated PXDN, and MXRA7, blood plasma levels. Worth contacting Hejbøl, cc Germain & Hanson, to see if they've considered using plasma levels of PXDN and MXRA7 as a biomarker for these basal lamina/extracellular matrix problems? Might make this a whole lot more...

Just wondering if I should have added "Long Covid" i.e. "will he now write to NIHR, and MRC, to highlight the need to ensure that all funded ME/CFS [, and Long Covid,] research must be high quality -". Thoughts?

Lets hope the question gets asked, and, more importantly, that Sajid Javid does write to the funding bodies to highlight our concerns - might help to etch it into their memories! Can't find a link but Jonathan summed it along the lines ---- now children ---- all together --- unblinded studies...

Finally got around to emailing my MP asking her to submit a [UK Westminster] Parliamentary Question - here's the email*. Hopefully my MP will assist, if not then I'll see if there's another MP who will. * "Hi Claire [Hanna], thank you for asking a Written Parliamentary Question (last June) on...