Not very with it today, but it is worry that they still call themselves a CFS clinic when the new NICE ME/CFS guidelines have been formally published for some eighteen months (29 October 2021) and were available in draft form well before then.
The CFS Clinic and Service pages read better than the CFS title might lead you to expect. The Hospital webpage says this of Professor Vinod Patel And Warwick University says this of him
And these are based on what evidence (specific to ME)? Especially that hoary old chestnut, the "boom and bust" cycle?
It looks like a complete website update has happened: Chronic Fatigue Syndrome :: George Eliot Hospital (geh.nhs.uk) renamed to Chronic Fatigue Syndrome Still the same consultant listed on the main website pages. But strangely google AI seems to want to associate Dr Edmond Sung (Gastroenterologist) to the clinic, yet I can't be sure of that association. Worth a look through as have some concerns about the resources and risk factors sections. Worrying when something gets worse rather than better.
OK this job description (at the bottom) is ominous and explains some of the downhill slide in knowledge/increase in tropes that can be found in their documents. Chronic_Fatigue_Syndrome_Care_Plan_2014_B.docx (live.com) CFS_Self_help_A3_Booklet.pdf (geh.nhs.uk) - this one could be used by one of the charities as a main basis for the trope list, it is apalling and has every idiot trope-graph and term in the book just back-to-back in it. Soooo harmful. I'm not sure I've ever seen an official clinic actually dare write down the 'lying in bed all day' ism... all about deconditioning - so can't read the guideline then. I'm quite flabbergasted about how ignorant to the harm it would cause you must be to write this in 2024. Along with the decision in resources section to put the links in order of the NHS CFS/ME website, then Nice guideline for 'Tiredness/fatigue in adults' all above the Nice guideline for ME/CFS that they should be being funded to deliver, carefully also not putting it last (the covid guidance is after it) lest that benefit from the primacy-recency effect. and their choice to rename their department Chronic Fatigue Syndrome (previously CFS) rather than ME/CFS So the message is clear that they are moving further away from the new guideline? Job Advert (jobs.nhs.uk) Specialist Occupational Therapist in Chronic Fatigue George Eliot Hospital NHS Trust Information: This job is now closed Job summary Job Title Specialist Occupational Therapist in Chronic Fatigue Syndrome Hours per week 22.5 Permanent Salary £33,706-£40,588 per annum, pro rata Closing Date: 21/04/2023 Main duties of the job An exciting opportunity has arisen for an enthusiastic and motivated Occupational Therapist to work as a condition-specific Specialist practitioner in a developing and dynamic outpatient setting. In this role you will be supported to develop your biopsychosocial assessment skills and interventional skills working with patients diagnosed with Chronic Fatigue Syndrome (CFS), who often have complex needs and co-morbidities. Your role will allow you to empower patients in self-managing their long term condition and maximise their function. You will be able to engage in and develop multi-modal treatment pathways for patients referred by their Consultant to the CFS Therapy service and will also gain some experience in fatigue management working with patients experiencing Long Covid symptoms. You will be supported in your role by other members of the CFS multi-disciplinary team and the Therapy team. For questions about the job, contact: Advanced Physiotherapy Practitioner
I'm quite curious as to whether there is some sort of 'split'/different voices between the medical side and the 'clinic/therapy' side being in charge on the 'treatment' ie once diagnosed then the biomed side doesn't get much of a say or contact - as we'd be looking for from a scientific perspective where staff could be learning from seeing patients longitudinally (and the results of 'therapies' if they made people worse etc) and would be able to have a say or get clues as to what might work as treatments etc.
