Search results

Great interview by the family. They convey things well in a very moving way and it’s amazing they are still advocating post all what’s happened and the fact that ME as a battle is no longer ( sadly) theirs. I don’t really agree with how dr Shepherd frames prognosis. For him there’s “the...

Wesley and Hawkins, wessely and jo brand, wessely and Stephen fry, wessely and prince harry, wessely Regis professor, working for government and military on mental health, ex president of psychiatrists and every title going. He’s built an impressive don’t touch wall hasn’t he for a man with...

AFAIC the jury is out onstimulants for concentration and memory, I've seen mixed remviews in the mild - still at school work - and certainly in the severe where these problems are more extreme, I don't think they're the answer at all as they prevent rest, no stimulant allows for ten minutes...

I think Jason was very principled in his actions initially when everyone feared the IOM was going to be a massive stitch up. Some maintain it still was, I think they were actually very helpful. I personally found Jason anti SEID as a position , more so than reasonable in some of his essays or...

In this discussion of criteria perhaps we need to be mindful of the now dominant in the UK NICE criteria which requires as minimum just fatigue, post exertion fatigue and one other symptom. To me that would be an umbrella selected even broader than Jason's seemingly flawed SEID study did.

My understanding of the Jason SEID study was he was using a very weak definition of PEM as you quote, whereas SEID criteria IOM I think go beyond fatigue after activity and are based on the understanding that a dr is using PEM to diagnose as we understand it, not just excessive fatigue which can...

In a cash strapped era CFS services are seen as an area they can get away with skimping on. It's been like this always. Even dr bansals service, regarded as one of the best, was saying it couldn't provide severe care due to lack of funds. It's a sham but as a patient population we aren't to date...

Isn't a part of the problem that we have few Drs/researchers involved in our field for news to travel and networking to occur and all those who don't attend the CMRC conference might well be hearing nothing, falsehood or negatives about our community. Where does a neuroscientist or immunologist...

Wow, that was a short reply. I agree with Sasha, the answer to you need to put in a lot more money isn't "we put in a little money previously". They had other centres of excellence they could have funded , that's why I don't buy the idea the issue in the states is researchers not applying. They...

I was reading about dementia research, which is really taking off for various reasons. I saw that there's been a target set for some form of disease modifying drug to be found by 2025 I think, I think that's a global target and david Cameron I think was behind world big players all rising to...

Should we be writing to scientists directly to inform them of ME/CFS as a worthy, interesting area they might like to consider. Isn't a problem the illness for various reasons just isn't on people's radar, is misunderstood and not respected. We could target certain people and specialisms eg the...

I think it is good AFME are seeking patient feedback. The issue I have as expressed here is the fact that they often don't do a great job at informing in much detail prior to this and seem reluctant to take controversial positions themselves. #MEAction are seeking feedback too. I want a...

It's less about cause than about establishing our abnormal PEM weakness on exertion, through 2 day testing. The research contrasting us with MS has been interesting, larger studies establishing the abnormal response which IOM considered very important hence SEID and then, for uk benefits...

I'm not remotely capable of doing this, but if it's so widely available and not hugely expensive it's sad no one in the uk has had the interest or been persuaded to undertake a study. At £300/pp , 50 tests would cost £15 000, then the scientific analysis paper writing costs. Could those who're...

Interesting idea, the others could Stay the same.

The prognosis section suggests most people are just rising up to the surface - to remain mild - but not fully making recovery. Is this borne out by any evidence? Mild is perhaps a term that needs ditching when grade one level ME often means no exerting physical activity, no late nights, vastly...

But AFMEs stance carries weight, it justified PACE, it can justify a weak modification of the status quo.

It is a shame people can't just try melatonin rather than research funds having to prove it but aren't MEA funding a study? I think it's a shame CMRC conference haven't invited or procured the workwell type scientists. Whether that's political but people don't get interested in what they don't...

I'd like the American CPET exercise testing done on a sizeable level to get that abnormality established as fact so it's recognised, especially in uk and countries heavily pro GET. Comparing us with MS , heart disease and depression and also with CF without PEM might help to make the picture...

Yes you're right