Prof Julia Newton specialises in autonomic dysfunction and has done research on ME and orthostatic intolerance, funded by both the MEA and MERUK. She works in association with Dr Gavin Spickett, who is a consultant immunologist and heads up the "North of Tyne CFS/ME Rehabilitation and Management Team" (listed on the Newcastle PCT website as the "Chronic Fatigue service" and found in the site directory under the pathway Mental Health/Psychology in Healthcare/Health Psychology Services for Adults/Chronic Fatigue).
I am trying to fathom what would happen to me if I asked for a referral! On the one hand, Prof Newton has done ME-charity funded research showing clear associations between fatigue and autonomic dysfunction in ME. She has written in a journal calling for autonomic/EEG testing as standard when patients are referred to CFS clinics.
On the other hand, she describes CFS as "commmon" and in 2% of the population (presumably Oxford criteria since the prevalence of true ME is supposed to be about 0.2% and rare). And although Dr Spickett is an immunologist who refers you to immunologists, this is what the Chronic Fatigue Services website says it offers:
"The chronic fatigue team provide multi-disciplinary team assessment to patients. This can lead to group work or one to one help with pacing, graded activity, adjustment issues and associated emotional difficulties such as anxiety and depression" even though "Your GP can make a referral to Dr Gavin Spickett consultant in immunology at Royal Victoria Infirmary Newcastle upon Tyne, who will allocate patients to consultants in infection and tropical medicine."
I'm very confused about whether they're just offering a bunch of occupational therapists giving basic GET/CBT to ill-defined "CFS" patients as their website suggests (standard practice across NHS "specialist" ME/CFS services) or whether they are, as suggested by their published material elsewhere, thoroughly testing patients to exclude wrong diagnoses and then giving them EEG/OI diagnostic tests. And I'm wondering what the point is of those immunologists.
This talk was given to EDMESH by Prof Newton a year ago. It suggests that you get OI testing and OI treatments and also mentions "individualised activity management" aimed at staying below the anaerobic threshold - this sounds more like Staci Stevens's Pacific Fatigue Lab stuff than NHS GET. She seems to be saying clearly that CFS patients have problems with lactic acid and inflammation.
Any experiences, anyone? Please PM me if you'd rather not post publicly.
I'd like to get my ME-related OI treated but I don't want to end up in the jaws of another joke NHS CBT/GET centre (I've already had that locally, to zero effect).
I am trying to fathom what would happen to me if I asked for a referral! On the one hand, Prof Newton has done ME-charity funded research showing clear associations between fatigue and autonomic dysfunction in ME. She has written in a journal calling for autonomic/EEG testing as standard when patients are referred to CFS clinics.
On the other hand, she describes CFS as "commmon" and in 2% of the population (presumably Oxford criteria since the prevalence of true ME is supposed to be about 0.2% and rare). And although Dr Spickett is an immunologist who refers you to immunologists, this is what the Chronic Fatigue Services website says it offers:
"The chronic fatigue team provide multi-disciplinary team assessment to patients. This can lead to group work or one to one help with pacing, graded activity, adjustment issues and associated emotional difficulties such as anxiety and depression" even though "Your GP can make a referral to Dr Gavin Spickett consultant in immunology at Royal Victoria Infirmary Newcastle upon Tyne, who will allocate patients to consultants in infection and tropical medicine."
I'm very confused about whether they're just offering a bunch of occupational therapists giving basic GET/CBT to ill-defined "CFS" patients as their website suggests (standard practice across NHS "specialist" ME/CFS services) or whether they are, as suggested by their published material elsewhere, thoroughly testing patients to exclude wrong diagnoses and then giving them EEG/OI diagnostic tests. And I'm wondering what the point is of those immunologists.
This talk was given to EDMESH by Prof Newton a year ago. It suggests that you get OI testing and OI treatments and also mentions "individualised activity management" aimed at staying below the anaerobic threshold - this sounds more like Staci Stevens's Pacific Fatigue Lab stuff than NHS GET. She seems to be saying clearly that CFS patients have problems with lactic acid and inflammation.
Any experiences, anyone? Please PM me if you'd rather not post publicly.
I'd like to get my ME-related OI treated but I don't want to end up in the jaws of another joke NHS CBT/GET centre (I've already had that locally, to zero effect).