ME/CFS services in the United Kingdom

Peter Trewhitt said:
What I suspect will be a harder problem to combat long term will be from well intentioned clinicians slipping into pacing up. It may prove that with clinician and patient both desperate for improvement that an initial improvement from better activity management through pacing and more rest will be mistaken as part of an ongoing recovery process. Unfortunately any such improvement is likely for most to be within an activity level ceiling, but that ceiling may not be hit until after the end of the time limited specialist service involvement.
Click to expand...
By far the hardest thing I had to do was accept the reality of both the disease itself, and the medical system and broader society not giving me the space to do that for many years.

I think this is going to be be the hardest part for most patients. There is no easy or nice or quick way around this. It is a shitty reality and nobody who has to face it is going to feel good about any of it.

Would be nice if the rest of the world didn't make it a whole lot harder than it needs to be. Hopefully we are now moving in that direction.

The programme can include the following: ● Help establishing a robust routine. This includes sleep and activity, mealtimes and screen time. ● Activity advice and management to increase muscle strength, improve balance, coordination and joint mobility. ● Graded exercise therapy (GET) to further develop strength and stamina, and improve fitness. ● Pain management techniques including relaxation, activity scheduling and pacing. ● Developing activities of daily living (e.g. ordering food in a cafe, meal planning, shopping and cooking). ● Develop confidence in managing symptoms and getting back on track. ● CBT (cognitive behavioural therapy).
Click to expand...
SOS. Same Old Shit.

Patients are incompetent children who need to be instructed in the basics of organising and living their lives.

Do these clowns ever listen to what they are saying?
 
Sean said:
Patients are incompetent children who need to be instructed in the basics of organising and living their lives.

Do these clowns ever listen to what they are saying?
Click to expand...

"ordering food in a cafe"

A cafe? Is someone transporting me there and back preferably via teleportation to avoid making me ill? Are they making the cafe silent - no other patrons, background music, drinks machines switched off? Are they serving something I can eat? If I can eat it, I'll order it. Sounds like a service I would sign up for - finally, something of some relevance to my life.
 
JemPD said:
what is FS?
Click to expand...

Fatigue Syndrome but Neurasthenia when it's officially logged within NHS SNOMED.

There is a problem in the clinics with the clinicians who are determined to reframe ME as a mental illness, block patients with ME having anything recorded explaining the physical aspect of the illness.

I’m trying to understand if the new guidelines in some way can prevent it from continuing.
 
JemPD said:
what is FS?
Click to expand...
= MUS https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/functional-symptoms/
Functional symptoms are physical symptoms without an obvious physical cause. They can also be called Medically Unexplained Symptoms or Somatic Symptom Disorder. This page from Great Ormond Street Hospital (GOSH) explains about functional symptoms in children and young people and how they can be managed.Everyone can have physical symptoms such as painful or uncomfortable feelings inside the body. Usually they get better on their own, and if they do not, we might ask the doctor about them.

Often a reason for them can be found, but sometimes it cannot, even after the doctor has done a range of tests. If the symptoms continue and get in the way of everyday life we call these Functional Symptoms (FS) or Medically Unexplained Symptoms (MUS).

Functional symptoms are common – one in four children have them – and almost everyone has experienced unexplained physical symptoms such as dizziness, headaches, or tummy aches. It can be frustrating not to know the cause. However, these ‘medically unexplained symptoms’ can be understood better over time.
Click to expand...

More at link
 
Ariel said:
"ordering food in a cafe"

A cafe? Is someone transporting me there and back preferably via teleportation to avoid making me ill? Are they making the cafe silent - no other patrons, background music, drinks machines switched off? Are they serving something I can eat? If I can eat it, I'll order it. Sounds like a service I would sign up for - finally, something of some relevance to my life.
Click to expand...
This quote was from a children's clinic advice sheet.
 
Last edited by a moderator:
Simbindi said:
This quote was from a children's clinic advice sheet.
Click to expand...

Thank-you. But I don't see how that helps? It's also presumably hard to tell the difference between materials aimed at children and at adults, which is telling. I am aware that some people struggle ordering food and so on due to other conditions. I am not sure what relevance that has here, however.

I am just sick of being patronized, and the same applies to children.
 
Last edited by a moderator:
Ariel said:
Thank-you. But I don't see how that helps? It's also presumably hard to tell the difference between materials aimed at children and at adults, which is telling. I am aware that some people struggle ordering food and so on due to other conditions. I am not sure what relevance that has here, however.

I am just sick of being patronized, and the same applies to children.
Click to expand...
I assumed it was intended to cover advice for children using school cafeterias. Of course, it is condescending for older children and teenagers too.

Edit: As someone who has supported SEN children in secondary schools, these places can be noisy and chaotic. However, the SENCO would normally make adjustments for vulnerable children to help them manage this, such as being able to leave their last lesson before lunch 10 minutes early so they can be first in the queue for lunch, or have a TA with them.
 
Last edited:
Ariel said:
"ordering food in a cafe"
A cafe? Is someone transporting me there and back preferably via teleportation to avoid making me ill? Are they making the cafe silent - no other patrons, background music, drinks machines switched off? Are they serving something I can eat? If I can eat it, I'll order it. Sounds like a service I would sign up for - finally, something of some relevance to my life.
Click to expand...

Simbindi said:
I assumed it was intended to cover advice for children using school cafeterias. Of course, it is condescending for older children and teenagers too.
Click to expand...

I couldn't use the cafeteria at school as that would have meant unnecessary walking, and I needed my energy not to faint in lessons. I used to lie on a bench by the lockers in the corridor and my friend would give me half of the peanut butter sandwich her mum had made her (since my own mother couldn't help with sandwiches at that time, having ME herself). At Sixth Form there was a snack trolley which used to come round the main hallway - huge upgrade - and I would lie on the hallway floor with the luxury of a tuna roll of my own.

Honestly, these people are a joke. Have they ever met a patient?
 
Peter Trewhitt said:
I suspect most of them have only met mild and moderate patients, and then only on their good days.

UK ME/CFS specialist services in general are unaware of the reality of their patients’ bad days, and totally unaware of the existence of severe ME.
Click to expand...
They are aware of severe ME, but either cognitive dissonance or face saving
Leads to this being considered PRS. ...
 
Amw66 said:
They are aware of severe ME, but either cognitive dissonance or face saving leads to this being considered PRS. ...
Click to expand...

PRS?

Sorry I struggle with acronyms, text speak or abbreviations.

PRS Paul Reed Smith (Guitar Brand)
PRS Performing Rights Society (UK)
PRS Partnership (IRB)
PRS Printer (File Name Extension)
PRS Pairs (shoe industry)
PRS Poverty Reduction Strategy
PRS Philosophical Research Society (Los Angeles, CA)
PRS Partido da Renovação Social (Portuguese: Social Renovation Party; Angola)
PRS Portable Reader System (various companies)
PRS Paranormal Research Society (Pennsylvania State University; State College, PA)
PRS Personal Response System (education)
PRS Polski Rejestr Statkow (Polish Register of Shipping)
PRS Pedal Release System (safety device)
PRS Pour la République Sociale
PRS Programmed Restraint System
PRS Preset
PRS Pre Release Software
PRS Personal Response System
PRS Printer Resource
PRS Pattern Recognition System
PRS Presentation File
PRS Performance Results System
PRS Process Rating Scale
PRS Packet Radio Service
PRS Print Style
PRS Premium Rate Services
PRS Proactive Remote Services
PRS Performance Rating Scale
PRS Pedal Release System
PRS Passive Rear Steering
PRS Private Rented Sector (UK, property)
PRS Parent Rating Scale
PRS Perception Research Services (online survey company; Teaneck, NJ)
PRS Premium Rate Services (Telecoms)
PRS Peer Review System (various organizations)
PRS Progress Rail Services (Caterpillar, Inc.)
PRS Police Retirement System (various locations)
PRS Philosophical and Religious Studies
PRS Primary Reference Source (Telcom Solutions)
PRS Personal Radio Service
PRS Pierre Robin Sequence (birth defect)
PRS Position Rotation Scale (animation)
PRS Public Regulated Service (Galileo)
PRS Peer Recovery Specialist (various locations)
PRS Protective and Regulatory Services (Texas)
PRS President of the Royal Society
PRS Parcel Return Service (USPS)
PRS Pseudo-Random Sequence
PRS Passenger Reservation System (Indian Railways)
PRS Public Radio System (various locations)
PRS Personal Retail Sales
PRS Postgraduate Research Student (various schools)
PRS Pattern-Recognition System
PRS Production Rule System (algorithm)
PRS Plumas Rural Services (Quincy, CA)
PRS Parry-Romberg Syndrome
PRS Problem Reports and Solutions (Microsoft)
PRS Pakistani Rupee (national currency)
PRS Parti Radical Socialiste (French: Radical Socialist Party)
PRS Pre-Retirement Seminar (various organizations)
PRS Pacific Rim Symposium
PRS Print Release Station
PRS Plant Root Simulator
PRS Problem Reaction Solution
PRS Partido para a Renovaçao Social (Portuguese: Social Renovation Party, Guinea-Bissau)
PRS Performance-Related Specification
PRS Product Recovery System
PRS Panoz Racing School
PRS Pressure Reduction Station
PRS Power Rangers Samurai (TV show)
PRS Potential Release Site
PRS Perspectives in Religious Studies (journal; National Association of Baptist Professors ofReligion)
PRS Phase-Resolved Spectroscopy
PRS Premier Reference Series (Pioneer/Premier technology)
PRS Paul Revere Society
PRS Provider Referral Services (various organizations)
PRS Piedmont Research Station (North Carolina)
PRS Product Requirement Specification
PRS Prudential Referral Services (insurance)
PRS Partido de La Revolución Salvadoreña (El Salvador)
PRS Partial-Response Signaling
PRS Power Radio Service
PRS Packet Routing Switch (IBM)
PRS Problem Resolution System
PRS Product Repair Service
PRS Primary Receiving Site (US FEMA)
PRS Proximate Rebound Synthesis
PRS Prieto X-Linked Mental Retardation Syndrome
PRS Packet Ring Switch (Alcatel)
PRS Pallet Repair Systems, Inc
PRS Partially Reflecting Surface
PRS Phase Reference Symbol
PRS Penske Racing South
PRS Proteomic Research Services, Inc (Ann Arbor, MI)
PRS Prosthetics Research Specialists
PRS Provide Repair Service
PRS Portable Radar Simulator
PRS Pennsylvania Radiological Society
PRS Portora Royal School (Northern Ireland, UK)
PRS Primary Replication Server
PRS Professional Rehabilitative Services
PRS Ports Refurbishment System
PRS Propulsion Requirements System
PRS Pricing Reference Server
PRS Pull Rope Switch
PRS Piracy Risk Surcharge (shipping industry)
PRS Provider Reporting System (Australia)
PRS Pesticides Registration Section (United Kingdom)
PRS Payload Retention System
PRS Property Repayment System
PRS Parakeet Response Syndrome
PRS Production Representative System (government contracting)
PRS Philippines Regional Section (US Army)
PRS Passive Refrigeration System (transport of perishable agricultural products)
PRS Platform Requirements Specification (iSMART)
PRS Protocol Review Subcommittees
PRS Poseidon Radar Simulator
PRS Performance Review Standards
PRS Puerto Rican Syndrome (psychiatric condition)
PRS Project Requirement Sheet
PRS Performance Requirements Summary/Survey
PRS Passive Radar Surveillance
PRS Provisioning Requirements Schedule/Statement
PRS Production Readiness Strategy
PRS Parallel-Resonance Screen
PRS Pressure Refueling Systems
PRS Planning Reference Station (ITU-T)
PRS Primary Resistance Starting
PRS Project Requirement Specification
PRS Pilot Rating Summary
PRS Progress Review and Status Report
PRS Product Release Schedule
PRS Program Reservation System
PRS Pen to Rib Space (Designjet printers)
Click to expand...
 
PRS
Wikipedia said:
Pervasive refusal syndrome (PRS), also known as pervasive arousal withdrawal syndrome (PAWS) is a rare hypothesized pediatric mental disorder.[1][2][3] PRS is not included in the standard psychiatric classification systems; that is, PRS is not a recognized mental disorder in the World Health Organization's current (ICD-10) and upcoming (ICD-11) International Classification of Diseases and the current Diagnostic and Statistical Manual of Mental Disorders (DSM-5).
Click to expand...
 
Pervasive refusal syndrome (PRS), also known as pervasive arousal withdrawal syndrome (PAWS) is a rare hypothesized pediatric mental disorder.[1][2][3] PRS is not included in the standard psychiatric classification systems; that is, PRS is not a recognized mental disorder in the World Health Organization's current (ICD-10) and upcoming (ICD-11) International Classification of Diseases and the current Diagnostic and Statistical Manual of Mental Disorders (DSM-5).
Click to expand...
Always something more to learn. I didn't know PRS was not formally listed, by anybody.

Makes Crawley's use of it in the clinic even more disturbing and objectionable.
 
Sean said:
By far the hardest thing I had to do was accept the reality of both the disease itself, and the medical system and broader society not giving me the space to do that for many years.
Click to expand...
I think you have just summed up my situation so accurately. That's almost spooky yet very much a relief that I am not mad.

I feel I have been misled for so long by 80% NHS HCPs over last couple of decades.
I have a distinct memory of Prof [blank] at Infectious Diseases Clinic in [blank] simply refusing to test me for anything since he said there was no point since there is no treatment anyway.

He even described me at end of consultation as being "a tough nut to crack". I had the temerity to want to discuss with him what he thought of J. Kerr and J. Gow's gene expression studies. He simply dismissed them as being irrelevant due to subgrouping. It didn't seem to enter his head that I might know a little bit of something. (I was a BMS in Haematology and Transfusion Science)

There you go , I daren't name and shame just in case they in NHS treat me in even worse manner.
Hence I no longer go to NHS unless I have no choice. In fact I no longer ask for help from anybody if I can possibly help it.

Very bad situation. However I am sure many people will recognise this type of thing.

I now hope desperately with the new guidelines, that GP services will improve . That improvement should happen as soon as the new science based knowledge has had time to spread and the CCGs catch up too.

There is obviously a huge knowledge gap and biomedical research on larger well controlled and selected patient groups is so important.

However I feel that there should be no need for any additional results coming in from biomed research for a marked improvement in understanding and respect shown. The new NICE guidelines really says that in terms of the past low or very low quality research.

I have finally had the confidence to verbalise to my GP that ME seems to me to be is yet another post infection disease and look forward to more appropriate objective biomedical tests being done perhaps.

I'm hoping this is in right place? I can't keep up atm. ;)
 
Having seen that the web page for my local 'fatigue clinic' on the NHS Trust website (Barking, Havering and Redbridge University Hospitals NHS Trust) was still referring to 'Graded Activity/Graded Exercise Therapy' amongst other things, I wrote to them this morning (in detail - which has caused my already very flared flare to flare further) and I had a reply from them just now, apologising for not having the up-to-date info on their website and they are already changing it.

Thank you for your very detailed email. I want to apologise to you that the information on our website is out of date. I am working with clinical colleagues to make sure the page is up to date with correct information. We have made a few interim changes and will update it shortly.

https://www.bhrhospitals.nhs.uk/chronic-fatigue/

Still a long way to go as I asked pointedly for confirmation that they were no longer offering GET/CBT based on de-conditioning etc for existing and new patients (I've been on the wait list for >18 months for their services) which was not covered by their response, but at least GA/GET/CBT gone from the website for now, which feels like a minor victory :)
 
Peter Trewhitt said:
UK ME/CFS specialist services in general are unaware of the reality of their patients’ bad days, and totally unaware of the existence of severe ME.
Click to expand...
Make that most places I think. Very few doctors visit the really sick in their homes, or see the oxygen tanks or feeding tubes they need to survive. I recall one patient commenting to me that they contacted a specialist and explained they had to crawl to the door, and they were told they cannot have ME as it does not get that bad.
 
Closure of the ME/CFS specialist service at Queens Hospital Romford, Essex

"We have just received some disappointing information from the ME/CFS specialist service at Queens Hospital, Romford, Essex:

“The specialist myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) service from Neurology is closing and appointments to newly referred patients are no longer being offered.

“As background information, Amelia Goldsmith-Lister, Highly Specialist Occupational Therapist, is retiring next year. We have closed the clinic to new referrals although we will be offering follow up appointments until March 2022, after which the service will close completely.” "

https://meassociation.org.uk/2021/1...ist-service-at-queens-hospital-romford-essex/
 
You must log in or register to reply here.
Back
Top Bottom