NICE GUIDELINE ON ME/CFS WILL BE UPDATED! (Sep 20th 2017)

[may_days]

(No hurry for answers)

That's a bit disappointing though. What if Rituximab (for example) or something else new shows promising results? Can they add to the guidance?

Sorry you've been crashing @Binkie4

 

[Sbag]

Where did 2020 come from? I don't recall seeing this in the NICE statements and can't find it on their site, but I have probably overlooked something so please let me know

 

[Jonathan Edwards]

My own experience with NICE is that they tend to take evidence on options pretty much up to the time of decision. I would expect the long time scale to indicate how long it takes to get a group of people to set up the re-assessment process and then do the re-assessment. If they produce an answer in 2020 I would expect data at least up to 2019 to be admissible.

My feeling is that the current situation is quite a good one. It has been admitted that the current guidelines are problematic. There is time for new data to feed through to assessment. There is also time for changing personnel involved. An immediate change would be welcome but it seems unlikely that current advisors will propose that.

 

[Barry53]

My own experience with NICE is that they tend to take evidence on options pretty much up to the time of decision. I would expect the long time scale to indicate how long it takes to get a group of people to set up the re-assessment process and then do the re-assessment. If they produce an answer in 2020 I would expect data at least up to 2019 to be admissible.

My feeling is that the current situation is quite a good one. It has been admitted that the current guidelines are problematic. There is time for new data to feed through to assessment. There is also time for changing personnel involved. An immediate change would be welcome but it seems unlikely that current advisors will propose that.

Do you think the very announcement of NICE promising this re-assessment, might help stimulate better investment in biomedical research into ME? More quality research into ME over the next two or three years would seem more important than ever now. Though I suppose clinical trials themselves must take a long time to bring to fruition.

 

[Jonathan Edwards]

Do you think the very announcement of NICE promising this re-assessment, might help stimulate better investment in biomedical research into ME? More quality research into ME over the next two or three years would seem more important than ever now. Though I suppose clinical trials themselves must take a long time to bring to fruition.

I doubt NICE has any impact on the research side, but the general publicity might help.

 

[slysaint]

2020;
FITNET ?
NB:
I've just had another look at this:
"
Who can get involved in the FITNET-NHS study?
Bath Specialist Paediatric CFS/ME Service will deliver both treatment arms. Patients are eligible if they have CFS/ME, have been seen by a paediatrician locally (this is NICE guidance), have had their screening blood tests done
(NICE guidance) and do not have access to a local specialist CFS/ME service."

"Activity Management: Children and young adults will receive information on managing activities and sleep from CFS/ME specialist occupational therapists over three video calls. Therapists will provide a detailed assessment of each participant’s daily activities and will give advice and support on how to increase this level safely over time. The specialist occupational therapist will hand over care to the local GP or paediatrician but will provide support to them with up to three phone calls.

• FITNET-NHS: Children and young adults (and their parents) will be given information and then work through 19 interactive modules (psycho-education and CBT). Children will be asked to do homework (answer questions and complete diaries). CBT-trained therapists will make appointments with children and their parents to review homework and support behaviour change."

Any changes to NICE guidelines would presumably greatly impact this 'study'........

 

[Grigor]

Sorry I didn't read through the whole thread so maybe it's been discussed but what data from which hospital are they referring to in this article. Is that data from Crawley? Or we don't know?

http://www.meassociation.org.uk/201...ate-its-guideline-on-mecfs-20-september-2017/

• A hospital department supplied data that patient reported outcome measures completed by patients receiving >18 sessions of CBT and/or GET improved 60% on the SF-36 (a patient-reported general health outcomes scale).