United Kingdom: ME Association news

V.R.T. said:
What efforts should we be making to tbat end?
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It depends how it unfolds, I guess, but one of the things we could think about is anticipating replication trials carried out by teams who might assume they can lift methodologies over from other diseases. But of course inclusion of severe patients is a lot more complicated than usual, and mild/moderate ME/CFS is variable enough that pre-trial monitoring of participants and long term follow-up is essential, otherwise you can't show whether anything has changed.
 
Felis Catus said:
When I saw them, they couldn't prescribe anything. I don't know how it's now but they used to send a letter to the GP with suggestions. My NHS GP is not keen on off-label prescriptions, so I guess I could've spent more money to see a private GP and then some more to pay for medications.
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Ah, I never got that far into the process. They promised things to my family and got hopes up, then I spoke to them and there were loads of red flags like them refusing to make any accommodations for my needs so I stepped away. I can see it being a money pit for desperate patients.
 
Kitty said:
But of course inclusion of severe patients is a lot more complicated than usual, and mild/moderate ME/CFS is variable enough that pre-trial monitoring of participants and long term follow-up is essential, otherwise you can't show whether anything has changed
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Agree this is another concern. We needed good services with good support to do trials safely and ethically. An app to flag a problem is not good enough when your support needs go through the roof from side effects of a medication and your quality of life is significantly worsened.
 
Kitty said:
It depends how it unfolds, I guess
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I think I might be arguing for saving our energy as well.

If there is any spare capacity, it might be best invested in looking at how to put together our website. We can say what the charities might not be able to: that we know almost nothing about ME/CFS and there is no treatment or useful therapy, but recently ill people may encounter practitioners pretending otherwise. Caveat emptor.

Also, to researchers: we're an experienced and very capable patient resource. You're welcome to read and join in our discussions, but here's the executive summary in case you don't have time.
 
bobbler said:
There are doctors like Dr Luis Nacul and the Suffolk and North East Essex Service who are caring for people with severe ME/CFS in accordance with recommendations in the NICE guideline

Dr Nacul organised a half day training session on ME/CFS last week for trainee GPs - where I gave a presentation. We had over 80 trainees present and the feedback was very positive!
It can be done!
Dr CS MEA"
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Can we get a copy of Dr Nacul's training session, or at least the slides?
 
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