Updated: What is ME? Video

That is a pretty good video. But it does have problems - it states things about the pathology of ME and the treatment of ME that have not been proven, with some of the things that are said almost certainly being wrong. It could lead newly diagnosed patients to go down time and energy wasting paths, such as seeking out low dose naltrexone as a treatment when there is no good evidence that it works - even the anecdotal evidence for it is poor. Things like 'low level of natural killer cell function' is said with a certainty that the evidence does not warrant.

If the ME Action video is used, (and there is lots of good material in it) then I'd hope it would be prefaced with some words explaining that not everything that is said about the pathology and treatments is correct.

 

I've just re-watched Adam's video and it holds up well I think. I think it does work as something to show newly diagnosed people. We do need such people to understand that it's a serious illness and that there is no cure or even proven treatments. There is a segment explaining that maybe 25% of people can look quite normal and can work, but have to rest at home - so the spectrum of illness severities is covered, and many of the pictures of people are of people with a moderate or even mild level of symptoms.

Of the two videos, I prefer Adam's for the purpose of quickly introducing key ideas to newly diagnosed people. I like that it says up front 'there are no FDA approved treatments; there is no cure'. People need to understand this reality, so that they are motivated to demand quality research, rather than think, 'oh, I'll ask my doctor for that low dose naltrexone, maybe that will make things better'. We need people with ME/CFS to take the disease seriously and to demand that others do too. I also like that it makes clear how ill-informed many doctors are about the illness. For people who have believed in the usefulness of the medical system until they get ME/CFS, coming to the realisation that medicine has great gaping holes of knowledge is important.

Adam, maybe, as an interim step, it's possible to just put a text note on the section of the video that talks about the NICE Guideline, to say that it has been updated and no longer recommends GET as a treatment, and to give a link to the new guideline?