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@Jonathan Edwards

I imagine those names will go down like a lead balloon with 'long-covid' patients.

Graeme Jones and Annie Pettersson at Nordic Clinic Stockholm has interviewed Jonas about ME/CFS and his unique research. You can view or listen to the full interview below. https://nordicclinic.se/interview-with-me-researcher-jonas-bergquist/ also on youtube eta: in english

https://www.nature.com/articles/s41598-020-77105-y

The key thing to note in the NICE guidelines evidence searches is that they initially defined the condition they were searching for evidence on (ie ME/CFS) and rated it accordingly. If Cochrane insist on redoing the exercise review they need to decide and make it clear which criteria they are...

why aren't they using 'encéphalomyélite myalgique' ?

I think the problem is most people understand 'recovered' to equal 'cured' and psychiatrists rarely cure people.

Doctor forced to give up her job after months of terrifying covid-19 symptoms calls for one-stop clinics A doctor who was forced to quit job after getting covid-19 warns patients left to recover at home need specialist help, and not pushed into ‘exercise’ programmes that can make them feel worse...

But we shouldn't have to. The difference between the MS guidelines and those for ME/CFS show that they are coming from two very different angles. MS as a recognised serious incurable neurological illness regardless of severity and ME as this kind of nebulous, 'is it an illness or isn't it'...

also works for Hazel O'Dowd https://www.nbt.nhs.uk/our-services/a-z-services/pain-clinic/pain-clinic-team

hmm https://www.nbt.nhs.uk/our-services/a-z-services/bristol-chronic-fatigue-syndromeme-service/cfsme-rehabilitation-checklist eta: https://www.nbt.nhs.uk/our-services/a-z-services/bristol-chronic-fatigue-syndromeme-service/chronic-fatigue-syndromeme-3

also it says supervised programme?

Guests: Mady Hornig, Fiona Lowenstein, and David Tuller https://www.microbe.tv/twiv/twiv-680/ Watched it/listened to it last night in a few sessions. This is just from memory. A lot of interesting stuff on the science/biology side for both Long Covid and ME from Mady mostly in the latter half...

Not a training course but worth keeping an eye on as is for GPs ME (myalgic encephalitis) https://gpnotebook.com/simplepage.cfm?id=-1952841719 diagnosis https://gpnotebook.com/simplepage.cfm?ID=-650837995

they can; MS, PACE 'We prefer the definitions of recovery we used' eta: also standard in all psych related stuff 'Recovery is a journey, not a destination'

That surely cannot be by Peter 'Denton' White?

Didn't NICE, or might have been DOH, acknowledge that ME is classified as a neurological illness? So why is 'Chronic fatigue syndrome' (note this will also have to change to ME/CFS) listed as a 'stand -alone' and not under Neurological conditions on the NICE website...

If anyone has the time/energy, I think it might worthwhile to go over the guidelines and make sure that this 3Ps model cannot be applied to them otherwise we could be looking at more of the same treatment, just worded slightly differently.

see also https://www.s4me.info/threads/open-medicine-foundation-now-in-canada.11075/#post-299275

re BACMEs use of 'cause' (deconditioning model). I found this slide from NHS Oxford on the 3 Ps which seems to illustrate BACMEs approach.