ME/CFS services in the United Kingdom

I need clarification. Is Chronic Fatigue Syndrome considered the exact same thing as ME/CFS and ME within the NHS?

 

Yes, at least officially. NICE is the gold standard in practical terms in this respect. But if health care workers are not up to speed on details they may misapply the terms and they may misapply them differently.

 

Sentinel cfs in Plymouth what’s that like
I’m not even really asking I can see what it’s like,wonderful
Any better in Exeter

 

Leicester Council report on Mental Health provision;
of interest
"
The Mental Health Liaison Service
(MHLS)
provides services to adults within LLR
aged 16 to 65 years. People are seen on inpatient wards at all UHL hospital sites
-
Leicester General Hospital, Leicester Royal Infirmary and Glenfield Hospital. The service
provides outpatient clinics and a specialist Chronic Fatigue Syndrome (CFS) service. Care
is provided by experienced multidisciplinary-team liaison professionals."

https://cabinet.leicester.gov.uk/documents/s148742/2023 November Scrutiny report v3.pdf

again, why is the CFS service included under mental health provision?

 

SNOMED CT UK Edition is the mandatory terminology system for use at the point of care in both NHS primary and secondary care.

The "Preferred Term" in SNOMED CT is Concept: SCTID: 52702003 | Chronic fatigue syndrome (disorder).

https://termbrowser.nhs.uk/?perspec...gRefset=999001261000000100,999000691000001104

The following terms are listed under Synonyms which are all designated as "Acceptable" terms in the "National Health Service realm language reference set (clinical part)" and are all coded to SCTID: 52702003.

Iceland disease
Benign myalgic encephalomyelitis
Chronic fatigue syndrome
Myalgic encephalomyelitis syndrome
ME - Myalgic encephalomyelitis
Myalgic encephalomyelitis
CFS - Chronic fatigue syndrome
Chronic fatigue syndrome (disorder)
Myalgic encephalitis
Myalgic encephalopathy


Additionally, there are three uniquely coded-for severity specifiers under "Children" terms to SCTID: 52702003 which are specific to the UK Edition:


Mild chronic fatigue syndrome (disorder) (SCTID: 377181000000104)
Moderate chronic fatigue syndrome (disorder) (SCTID: 377171000000101)
Severe chronic fatigue syndrome (disorder) (SCTID: 377161000000108)

 

My son was diagnosed, initially, with "postviral syndrome" by an NHS clinician, 24 years ago. Some months later he was assigned the diagnosis of "ME/Chronic fatigue syndrome" by an NHS paediatrician.

On blood test order forms, his GP still puts down "Chronic fatigue" along with whatever additional current symptoms he may have.

 

Copied post

The purpose of a study, could it be to keep the method and infrastructure intact.
From Sarah Boothby on X
New paediatric pathway guidance published where are the new NICE guidelines
The king is dead long live the king

 

https://www.theguardian.com/lifeand...specialist-vincent-deary-on-coping-with-life?

'Psychologist, author and fatigue expert Vincent Deary....
'It’s racing now as we sit together in a London hotel. We’re here to discuss his new book, How We Break: Navigating the Wear and Tear of Living, an exploration of our varying responses to the corrosive pressures of daily life, especially work, and an assertion of the vital necessity of rest, recovery and the lost art of convalescence. The book is the second in a trilogy by Deary, a professor of psychology at Northumbria University and a clinical fatigue specialist at the Cresta Fatigue Clinic, a role from which he has just retired. The NHS clinic, which is closing later this year, is unique in the UK for taking a multi-disciplinary approach to disabling fatigue.'
DUM, Dum Du.... anotherone bites the dust.....?!

 

I'm not sure where to post this for pwME in the U.K Some might not be aware of this code for housebound patients? Code 13CA

https://twitter.com/user/status/1800187126400913537

 

Is this the full / official list?

I don’t see the Yorkshire fatigue clinic or the George Eliot Nuneaton clinic

I was interested to look up both (and any others that might be not be too bad) to ask if they are still good / how good they actually are

I know there might have been changes if sue Pembertin retired a few years ago back now

and as those ‘goods’ were when it was old guideline I’d be intrigued whether in hindsight even that older stuff was what we’d want and if there was any good to be taken from it as a starting point

 

Thanks Hutan

I thought it made sense but to wade in as I might have missed these being discussed elsewhere.

I’d be intrigued given the what do we do now vs BACME clinic stuff to find out if there are some good or better places doing things a bit differently

I think it’s Salford or Manchester where I hear of good medical stuff but I’m not sure if that’s their actual me/cfs clinics just a sign of some good staff

you then remember that there were some that some patients liked but I wonder … did it work for all.

it would be good to get a sense in an organised way or how many clinics are in what categories re: how psych dangerous type things vs various shades of in between - we’ve been trained to be grateful for anything less than terrifying really. But also I’ve some sympathy because when you are ill it’s a hard message to take that you can’t train out if this and there’s no treatment. So truth doesn’t always go down well (you hear of people saying ‘only positive replies’ on social media etc

But that’s hugely helped if the support package genuinely dies the right thing with getting your employer to understand and offer options instead of silly ‘courses’ so everything is always temporary and precarious stuff vs fir other diseases where people deteriorate and it’s long term so they need a plan to get control of their life being given a chance.

There might be different elements that work well at different places.

if any are a good starter fir a roadmap.

 

I posted in 2022 about Liverpool Broadgreen MECfS service.
Met my GP today and he has had a number of new ME patients and he has been informed by Liverpool that they are no longer taking patients out of area. There are no clinics taking patients from my health authority.
Either Liverpool is experiencing an uptick in patients locally or a reduction in resources.