New private service: https://www.ruh.nhs.uk/rnhrd/patients/services/fatigue_services/index.asp?menu_id=1&RNHRD=y
It looks like a service run by occupational therapists. I don't understand the section on a private service. Does this mean it's run separately from the main NHS service and people have to pay, or that it's NHS work outsourced to a private company. I'm very suspicious of a service that groups pwME with people with other fatiguing conditions and makes no mention of PEM.
I think this might be same service as the one that ran at the mineral water hospital in Bath. Maybe they have just migrated across to the RUH. I attended this group programme well over 10 years ago when I was originally diagnosed and it was terrible. Patronising and useless advice where we were treated like young children. One of the first activities we did was to pick up various cards with pictures of people looking overwhelmed in different ways (eg spinning lots of plates, or sleeping in) and explain how they made us feel. From the descriptions on their feedback form it doesn't seem like things have changed much. There wasn't any CBT or GET as far as I can remember and I don't recall ever seeing a doctor. I remember actually the OTs running the group sessions talked about Esther Crawley who ran the youth fatigue service (possibly in the same building?) and who was running a trial on the lightning process. My memory is fuzzy but I seem to recall even the OTs seemed unsure how they felt about that at the time. edit: @Trish Did you attend this service too? I have some vague memory of reading a post of yours talking about it
No, I have written about the Dorset service as I experienced it over 10 years ago. https://www.s4me.info/threads/uk-dorset-me-cfs-clinics.32157/ Edit: Replies moved to the Dorset thread
Why is a private service being advertised on NHS website. It’s different if they contract to a private supplier but the service is through the NHS.
Just spotted this, which is pediatric CFS from 2019 but I couldn't believe any presentation was claiming recovery stats of 60% recover in 6months and 85% in one year (a clinical psych). It is a presentation from the Bath clinic (scroll to end to see links to Crawley etc and materials from Bath clinic) to an Oxfordshire hospital school (hence the url) which is a bit horrifying given the point in time and some of the feedback from the same clinic (pediatrics?) on the feedback in the link in the next comment. PowerPoint Presentation (ohs.oxon.sch.uk)
I just found this on MEAction from 2019: Appendix-5-Your-experience-of-ME-services-report-by-MEAction-UK.pdf which has collected feedback about all/any clinics in some sort of survey so worth a look through and can use cntrl+f to search by clinic I guess I noted one interesting nugget in a comment for this clinic was: "The clinic is part funded at least by Maximilian Cancer and they also run very similar courses for people recovering from chemotherapy. I think this is totally inappropriate as these patients will have a very good chance if full recovery through pacing whereas with ME/CFS there are no guarantees" Has anyone checked whether this is still the case for this clinic re: funding? And are there other fatigue clinics doing this sort of thing funding-wise? hence the generic move to fatigue (although maybe because of this it sounds safer than the pediatric one did back then because I guess you have to be more pacing and gentle when it might be someone who had/has cancer or something other than 'CFS'?)
It strikes me as interesting thar Crawley, increasingly struggling to get subjects for her paediatric ME/CFS research has now started research on ‘newer’ CBT variants with children not cured by the Bath clinic. One wonders at the contradiction between her previous claims of high levels of recovery and her seemingly ready supply of children not helped by her previous interventions.
This is while the MAGENTA trail was still ongoing. It's also the figure quoted to me in the adult Bath clinic in 2011.
In Bath between 2011 and 2014 the CFS/ME Clinic that I attended changed it's name to the 'Fatigue Clinic' which Nickie Catchpool explained to me was because they now helped Cancer patients to cope with fatigue and pain. Here's your links Occupational Aspects of the Management of Chronic Fatigue Syndrome: a National Guideline (nhshealthatwork.co.uk) ETA: Just found a slide which shows a basic graph clearly stating activity increased by 10% - 15% per week. Well done, @bobbler the last link in my chain of evidence.
sort of brings things alive in a number of ways realising this. Or a lot of questions that maybe if more clinics are doing similar things is a generic discussion for elsewhere. 1. the funding difference between the conditions / why is it that these clinics are wanting to do this and move into these new larger areas? No idea if this is tail-wag dog on funding vs moves to the generic. And BPS being happy to shift its focus to 'helping to cope' and 'fatigue' claims vs bare psychosomatic? and of course how CFS might be seen that this is 'it' for the condition vs 'something to offer' or is it pitched as a 'cure' for those who have post-cancer fatigue? 2. remembering that cancer patients are obviously having medical treatment, where this is 'alongside' - yet for CFS they claim this is the treatment OR as per new guidelines 'there is no treatment but we can offer to cope..' like just the rehab them without treating them being very different to fixing the broken leg first. I don't know whether these are people who finished treatment or still undergoing it for cancer but imagining their progression and recovery claims then should be seen as complicated given they surely can't be separated from the other treatment and recovery from that and any illness it has perhaps treated.
found this leaflet on the website (April 2024) Specialist Treatment for Children & Young People with Fatigue https://www.ruh.nhs.uk/patients/ser...ediatric_cfs_me/leaflets.asp?menu_id=1']Royal United Hospitals Bath (ruh.nhs.uk) it's a patient information leaflet Moving from childrens to adult Chronic Fatigue services
If the Bath kid clinic is so very efficacious so throughly rehabilitative how is such a step necessary? Perhaps this is just a helpful pointer for the odd poor child who turns into a pumpkin two weeks into the rehab program?
I think there has been a focus throughout both medicine and education on transition stages for post 16/18 year olds - ME/CFS is particularly poorly served as it is an orphan condition with no specialist consultants to transfer care to from paediatrics- so there's a gap in the market ETA Bath's reach for paediatrics is nationwide -so influence is extensive
I'm a bit torn on this one. PwME should have access to consultants, but those doctors need training and experience first. Is it better to put ME/CFS inside a specialism now (and risk it being the wrong one when we unpick the pathology) so that they can gain experience of looking after patients? Or is it better to wait? There are definitely days when I could do with a consultant in adulting.
