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@mlapenna, is there some reason why the list of studies isn't visible to those who aren't members? I seem to be seeing a different menu to @adambeyoncelowe.

I wonder if it would be good to have something telling patients how to tell whether a study is a good one and therefore worth risking their health in. Although that might be beyond a lot of patients. I wonder if a short review of each study in design terms from someone with expertise in trial...

Thanks! What did you click on to access that list?

Hi, @mlapenna. This is a good idea. I just looked at the site, though, and can't see a list of studies. I'm always reluctant to register for things online - is it possible to see the list without signing up? That might be a barrier for quite a few people.

Merged thread Solve ME/CFS Initiative is calling on US people to call on their representatives to demand that Congress create a federal ME/CFS Advisory Committee, in the wake of the shutting down of CFSAC yesterday. Video message here explaining: Instructions here for US people to contact...

Happens to me all the time when I write to my MP here in the UK and they forward my point to the relevant minister. The minister (or rather, their work-experience assistant) sends me a form response listing what they're already doing, which was the very thing I was complaining about. I agree...

I thought that the experimenters measured the gas exchange ratios to confirm peak effort?

Profound vested self-interest on my part! I think we all agree that governments need to invest but our experience as patients - many of us over decades - is that governments don't invest in this. I hope that things are approaching a turning point but if the CMRC's application fails, I hope...

I may be wrong but I thought that the MEA didn't so much raise money specifically for a rtx study but ringfenced £60k of their existing funds if a study went ahead. I assume that money has been reabsorbed into the Ramsay Research Fund. IiME, of course, set up a separate fund and raised money for...

Thank you, @dave30th - an excellent and clear summary of the situation. Have you alerted anyone in Cochrane to it?

The reference is supported with citations in that document.

I'm struggling a bit with calculating a protein target. If it's 1g protein for each kg body weight, I'd get 60g/day. If it's 1g protein for each kg lean weight, I'd get 40g. But most menu plans seem to have about 80g+. What is everyone else on?

Thanks! Sorry I didn't understand you both the first time. Sometimes things just dance around in my head (and often just dance straight out again). :(:oops:

I'm looking at a packet of ToFoo tofu (made in the UK) and on the back it says: Carbohydrate, 1.1g, of which sugars 0.7g and fibre 0.5g. So sugars + fibre is greater than total carbs. I thought that was maybe a rounding error but on the Ocado website (UK grocery store) it gives info for bell...

So are the net carbs on a UK packet the 'of which sugars' bit?

I thought that initially, but then I read someone saying that you could increase the amount of non-fibre carbs you ate by adding fibre. Maybe they were just confused! I can't remember where I read that.

Just wondering about the whole 'net carbs' (total carbs minus fibre) thing. What is it about fibre that offsets carbs, in terms of the biochemistry? Why does fibre stop the body from using the remaining carbs for fuel?

Welcome to the forum, @Chris Ponting! Thanks so much for all the hard work you're doing for us patients. Is there any we can do to help move your work forward? Should we be trying to fundraise for you? Can patients and supporters donate to your lab? Would it be of any use to have 23andme etc...

It's hard to avoid that conclusion, @Action for M.E. It would make more sense if you were explaining to patients to expect there to be hard limits on how much activity they can do; not that they need to establish some possibly mythical baseline and then that they need to work up from that.

But why would an increase in activity levels be attempted, without treatment of the underlying problem? Why would increasing activity levels be the clinic's focus? Why would you expect it to be possible?