But I would have thought presenting more, and more in-depth, case studies of patients being diagnosed as having - and not having - ME would have been a better way to cover the material.
Also, PEM needed to be better explained and contrasted much more clearly with the sort of post-exertional fatigue common in other illnesses.
Exactly.
Are there any other specifics you would like to see addressed in fine-tuning?
This activity is intended for primary care physicians, obstetricians, gynecologists, and neurologists.
Why just these specialties? It seems an odd list. Obstetricians and gynaecologists? In my part of the world, between I and my children, we were seen by infectious disease specialists, paediatricians, gastroenterologists, a rheumatologist, a psychologist, an endocrinologist and an ophthalmologist. [Edit - oh, and one neurologist - clearly my subconscious is trying to bury that horrible experience]. Not once did we see an obstetrician or gynaecologist. This list feels a little bit like throwing the illness in the 'women's problems' drawer.
No mention of the 2 day CPET. While not everyone will want to, or should, do it, I would have thought it should be mentioned somewhere.
I agree with the use of these in a clinical setting. They seem to get at the heart of the condition pretty well.
If the doctor isn't quite clear what PEM is, and the patient has no idea what PEM is, this could be a very confusing conversation. Perhaps there could be a suggestion that the doctor ask the patient to keep a diary of activities and symptoms for a period of time, so that both patient and doctor can see if there is a pattern of delayed exacerbation of symptoms. And perhaps the doctor needs to ask 'when do symptoms start or get worse?'.
And there is the complication that people severely affected may be in PEM all of the time.
Great that orthostatic intolerance testing is strongly advocated.
I'm not sure about the first point. There's a typo in the second point, and I don't think it's the best point to make there. Better to say that a diagnosis helps patients find resources and supportive social networks that can help with coping.
This was in a slide talking about the one case study. I'm not clear about the diagnostic significance of EBV titres. Is that controversial? If it's not a widely held view, perhaps it's best left out?
I think I'd like to see more about management as that's where doctors can make the most difference. For children, it's often more than adjusting schedules; it may be distance education or postponing formal education. For adults, it's assistance to negotiate with employers and to get benefits and home help. It's putting people with ME/CFS and their carers in touch with support groups. It might be finding permanent residential care or respite care. It might be finding a counsellor to help people cope with the losses. Basically all of the support that a doctor would give anyone diagnosed with a debilitating disease that is likely to require long-term adaptation.
Perhaps there needs to be more information for doctors to understand the impact of the disease? I don't recall anything about disease outlook other than there can be spontaneous remissions.
Overall, it's not bad.
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