Unrest Continuing Medical Education Program (CME/CE)

I had a look at this today, to evaluate it for use in patient guidance:

0.38 Says that ME/CFS affects a list of body systems, including the brain and gastrointestinal systems. I imagine having a cold affects lots of body systems too, even eating dinner affects lots of body systems. But 'affecting lots of body systems' is not really the thing to lead with, especially when we aren't completely sure that the effect is significant. The statement doesn't really inform people and can come across as naively trying to make the disease sound 'complex' and exaggerate its severity.

0.53 I think this may be the source, or at least a source, of what I think is the misleading idea that HHV6 is a trigger of ME/CFS. Given that most people get HHV6 when they are a child, it doesn't seem likely that an HHV6 infection is a trigger of ME/CFS. It's possible that it reactivates around the time of ME/CFS onset, due to the person being immunocompromised, in the same way that HSV also often reactivates. Maybe it's even that cause of ME/CFS. But, I don't think it's accurate to say that we know it is a trigger in the same way that EBV or SARS-CoV-2 are.

2.03 Definition of PEM, allows immediate exacerbation of symptoms which I think contributes to a confusion between PEM and fatiguability
2.08 Requires that the core symptoms have to be moderate to severe and present at least 50% of the time. I think that's in one of the criteria, but it doesn't really make sense.

A substantial reduction in activity - that really has to be present all of the time, as it's an average of activity.
Fatigue - if activity levels are reduced enough, there might not be a feeling of fatigue 50% or more of the time
PEM - for many people, they won't have PEM more than 50% of the time. For many people, they can reduce their activity levels to avoid that.
Unrefreshing sleep - I guess that could be present at least 50% of the time
Cognitive impairment - as for fatigue, if activity levels are reduced enough, there might not be cognitive impairment 50% or more of the time
Orthostatic intolerance - as for cognitive impairment​

3.56 Orthostatic intolerance - is defined as the inability to regulate heart rate and/or blood pressure while upright, and the video says it is confirmed with a tilt table test. I think we prefer to say that OI is the experiencing of symptoms when upright. OI can still be present when no abnormalities with heart rate or blood pressure are measured. The video makes it sound too cut and dried - you do the TTT or the Nasa lean test, and if the patient's heart rate increases by the required amount, or their blood pressure drops by the required amount, then they have OI (and therefore if those changes don't happen, then they don't). But, we know that the response to being upright can vary from day to day and during the day. If someone regularly experiences symptoms as a result of staying upright, then they have OI.

6.20 Co-morbidities and stuff about auto-antibodies - I think this content pushes at the boundaries and goes beyond what we can claim with confidence

7.40 The content explaining the wide range of severities is good

8.15 - gives the recovery rate of 5% for adults, without explaining that lots of people recover in the first two years. Also, does not explain that we don't have good data about recovery rates, so the 5% is just a guess. Instead that figure is presented with confidence.

9.30 - it's clearly against GET - very good

10.00 - a slide is headed 'NSAIDS Recommendations' and then lists 'celecoxib, low dose naltrexone, tramadol'. But the last two aren't NSAIDS, which means the video will lose credibility with people who know this. And it endorses the use of low dose naltrexone for pain, I'm not sure if that is correct.

10.10 - it mentions sleep hygiene and that if sleep improves, other symptoms may improve - but it doesn't give a warning about how sleep hygiene, sleep restriction and an unreasonably strict approach to correction of inverted sleep patterns and napping may just make everyone in the family miserable. It doesn't say that we don't know if restricting hours of sleep is safe in ME/CFS.

11.00 some good content about how doctors can support people with ME/CFS.


Look, I know I'm being picky here and pretty much every video about ME/CFS of any length will have something that can reasonably be questioned. We need videos and it's a usually a situation of 'close enough is good enough'. But I think there are too many issues with this one to use it for educating health professionals and patients. I also think the relationship with the Unrest movie is a drawback, as I don't think the movie was helpful in getting skeptical health professionals and family member on board. I think the same applies to a lot of the clips of the person who was the main focus of that movie that are used in this video - they distract from the messages.

So, I don't think this is a great resource to use for education.

 

2.03 Definition of PEM, allows immediate exacerbation of symptoms which I think contributes to a confusion between PEM and fatiguability​

This a serious problem.