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We have already had a lengthy conversation with Leisk a few years ago. There was no foundation to his protocol other than his imagination and his intention to set up a business selling the supplements as far as I can see. He is a fitness trainer with no medical or scientific training. This is...

@sarahtyson can you give us an update? If you don't want to do it here, perhaps ask the MEA to do an update on their website.

I've lost track of what's happening in this project. As far as I remember, there have been 3 questionnaires so far, one on symptoms, one that was supposed to be on PEM but mixed it up with all symptoms after activity, and one on function. I think there are supposed to be 2 more. Has anyone heard...

What on earth does he mean? I assume he's referring to the arbitrary point at which many doctors and guidelines switch from calling the problem post viral to ME/CFS. He makes it sound like ME/CFS only lasts 6 months, or perhaps it doesn't start until 6 months after infection. Either way, I think...

I think a useful partial parallel might be diabetes where it is necessary to 'pace' intake of carbs and insulin. However well the diet and insulin are controlled, it doesn't cure diabetes, but does help to avoid 'crashes'. They are management strategies for avoiding worsening, not cures.

I have no idea, but his focus is going to be on sorting out the doctors' strikes and getting waiting lists down. I hope the ME and Long Covid situations won't be completely squeezed out but they aren't likely to be on his radar for some time yet.

GF bread is awful. I don't try to replicate bread, when I want a 'sandwich', ie something to spread things on and eat for a snack or meal, I use rice cakes, corn cakes, lentil cakes. I think the simplest way to handle a GF diet is not to try to find direct replacements for the things you can't...

Good to hear from you, @Daisybell. I hope you can participate in the trial.

I haven't been following this thread much. I think a key point, surely, is that this test is designed for use with physically healthy people to test for anhedonia. Using it for people who are likely to be physically and cognitively fatigued and feeling very unwell at the start and become more...

I don't think Polybio is a lab. I think it's an organisation that raises funds and allocates them to whatever research they think worth doing, a bit like OMF.

I think I understand where you're coming from, @butter. We all want lots of excellent research that will make real progress with understanding ME/CFS and lead to treatments as soon as possible. I feel the desperation and despair. I just wonder if you are aiming your criticism at the wrong...

This discussion makes me think of the billion dollars the NIH was given by the US government to research Long Covid, which as I understand it is largely used up with precious little to show for it. Of course we can all agree that money is necessary, but larger amounts of money don't necessarily...

The authors are all at Brigham hospital, Boston. Out of curiosity I looked at what references they used for ME/CFS: