Discussion in 'Latest ME/CFS Research' started by Dolphin, Aug 31, 2015.
To put this in some context: one of the three authors is with the Norwegian ME Association.
They seem to be influenced a bit by Renee Taylor and Lenny Jason in the US (see references 10-12)
I would have preferred a stronger statement about pacing:
Here's what they came up with (for going forward)
No evidence of blaming patients or invoking CBT school-type views.
Exercise isn't discussed really in the text though it does get mentioned that there was and there will be in future a session on "physical exercise".
I thought that was good:
Though they're just reporting what the patients came up with.
The original format was that the patients/participants themselves would each (or with one or two others) give a presentation on a topic. However, they are moving away from this:
The problem with this now is that one can end up with CBT school-type presentations.
This looks a lot better than the usual CBT-GET only approach, in terms of listening to patients input, focusing on pacing, etc. But this kind of course would only be possible for mild me patients: getting there, sitting for a couple of hours, concentrating, talking. Unless they also offer it via online streaming or sth.
The part about the info presentations could be a bit tricky - on PR what I've learned most of all is that everybody is different, things work differently for different subsets. So the danger is that they'd put foward one single view for all participants to follow (because they trust the organizers as they are health professionals) and it wouldn't work for everyone or even make some patients worse off.
I like the part where they say action-planning could also mean doing LESS of an activity, or doing it differently. Sounds more like pace-planning, which could be interesting, certainly for new pwme.
People with mild ME are more likely to be working. This is not something that I would even contemplate doing on top of a job. I might have been interested when moderate - except that I can't stand this kind of group activity.
You're so right, I hadn't thought of that. Even if you're mild, you'd be too exhausted to do this on top of a workday. It's just that you get so little out of it. Most of the things they offer you can easily find online.
Sessions were 2.5 hours each. So quite long.
It's a step in the right direction at least. Yes, sessions of 2.5 hours are way too long. Bi-weekly - does that mean twice a week? If so, that's too frequent.
If it was done properly with no CBT/GET/ correcting false illness beliefs nonsense, I could see it being useful particularly for teenagers with ME/CFS. It could be quite validating, especially with the session for relatives to help them understand what the illness involves too.
Even for adults with ME/CFS, it could be useful. It takes a while when you first become ill to work out what is going on. For example, to pick up the information about orthostatic intolerance. GP's don't have the knowledge to help. Yes, I imagine it could be adapted to skype-type sessions for the house-bound.
The usefulness of the sessions depends a lot on the quality of the facilitators.
I think that is the key to it being either helpful or detrimental to patients. My experience is that the chances of encountering a health professional who is in the know are very slim. So I wonder how this is going to work out...
I wonder why no one has come up with the idea of doing this kind of course via an online platform. It could be private, so that only participants can enter. They could still monitor it, if they feel that is important. People could get information, do relaxation exercises, and be in contact with fellow patients without having to put in the energy of getting there and sitting on a chair for 2.5 hours. If their approach works, I expect patients to be very cooperative online. Physically attending sessions doesn't mean you're going to get more out of them, especially not so when you're this ill.
Yes, that's an ambiguous term. I think they wean every two weeks though not sure it's clear in the text.
There are some group online courses offered at: http://www.cfidsselfhelp.org/online-courses
Those courses look good, but the communication is by email and the groups could consist of people from all around the world. I think there is some benefit in local courses with face-to-face contact, even if done using online video.
Yes, there are support groups that meet for coffee that are run by ME/CFS organisations. But for teenagers especially, it's probably good to have something with more structure initially. The courses proposed in the paper @Dolphin posted would do that and allow the participants to identify some fellow participants that they would like to keep in touch with after the course.
You can also try a Google Site Search
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