Slides now up for 3 of 4 talks (Unger (CDC), Chu & Nacul) at American Public Health Association Special Session in Epidemiology

https://twitter.com/user/status/928664564299976704

 

It's hard to judge from just slides, but the Luis Nucal presentation seemed to be promoting some form of OT led 'management' for patients. At the moment, I think that it would be better to put that money into further research, rather than almost worthless 'care'.

https://apha.confex.com/apha/2017/meetingapp.cgi/Paper/395150

 

Yes, it did sound like he was pushing for improvements (hard to say from just the slides), but I'm wary of any assumption that we should be routinely paying OTs to do anything for CFS patients.

 

Naïve question, probably. Why do you think that? Is it based on your own experience or on something else you know about.

One the face of it, I would have expected an OT to be a positive experience, provided they focus on assistance aids rather than assuming that the pwME will inevitably become more mobile from exercise.

From my mother's (elderly not ME) experience, I've found them to be a bit of both. St Columba's Hospice are in the first camp and the NHS the second, so I've probably answered my question for you!

 

I had an OT who made all the difference to me. For one thing she pushed for me to get a wheelchair which I had never considered and which then transformed my life. She also helped me get an electric bath seat, toilet stand, stand to help me out of bed, transfer sheet, handles round the house, all sorts of things which made life easier.

The BPS people have screwed everything up with their theories but these support services make a lot of difference to things like Parkinson's and MS so we should be getting the same. They often work alongside consultant services and specialist nurses. If they are already in place as the biomedical evidence comes in, and it is now possible change will come, we will be in the position we should have been all along; treated like any other neurological, disabling disease.

 

Occupational therapy is rooted in and focused upon helping people to undertake an occupation. It can have a lot of behavioral focus as well, which is no doubt well-intentioned in many cases, but can also be used abusively in a BPS framework.

Parts of it are useful and can be essential in supporting patients. But it can certainly go too far, and it doesn't make sense for OT's to lead any ME/CFS service. A service should be led by a specialist doctor, with OT's providing support in creating or seeking accommodations for illness and disability when indicated.

 

Their can certainly be some really good and compassionate OTs out there, who I expect would be unlikely to harm anyone, while being able to help many. But from what I've read of OTs specialising in ME/CFS, there are a lot of reasons to be cautious. Also, I've not found any specialist OT knowledge of ME/CFS that seems particularly valuable. I'm always wary of assuming some group should be paid for their expertise when there isn't any good evidence that they have valuable expertise, and a lot of the info on ME/CFS I've read from OT sources has been worrying.

This could be an example of why my approach to medicine and support for ME/CFS can be misguided. Its good to be reminded how different all our experiences are, and how there are people working within the NHS who do not let the junk-science and prejudice around ME/CFS prevent them from providing useful support for patients.

I've never had any advice from a medical professional I consider to have been useful, but lots of other people are in very different circumstances to myself. If we could bring about real change to how ME/CFS is thought of/discussed/taught within the NHS then I expect routine OT support could be a useful thing for many people with ME/CFS.