United Kingdom: London - Royal Free Hospital CFS services

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Royal Free Hospital
Chronic fatigue syndrome treatment


Chronic fatigue syndrome (CFS) is also known as myalgic encephalitis (ME). The extreme fatigue brought about by this condition is persistent, often overwhelming, and is associated with other symptoms, such as aching muscles, sore throats, deteriorated short-term memory and an increased sensitivity to noise and light.

Why do fatigue symptoms persist?
We do not know the cause of CFS/ME, but the Royal Free London fatigue service can address the factors that cause fatigue symptoms to persist, and reduce their impact on everyday life.

Some of the factors that might make fatigue symptoms feel worse are:

  • relapse brought about by excessive activity, aka ‘boom-bust’
  • a disturbed sleep pattern
  • difficult emotions, such as stress, anxiety and depression
  • ME/CFS can itself cause frustration, a sense of being isolated or feeling misunderstood, difficulty in relationships and an experience of stigma.
What chronic fatigue treatment does the Royal Free London provide?
Our specialist fatigue team provides a range of treatment options for ME/CFS. We offer face-to-face, virtual and telephone contact options to improve the access to our service for all.

Fatigue Specialist Psychology
Our clinical and counselling psychologists use various techniques (such as mindfulness, cognitive behavioural therapy, acceptance and commitment therapy and compassion focussed therapy) to help you better align with your personal values and live a meaningful life, in spite of fatigue’s challenges. They can also help you:

  • set and achieve goals
  • manage sleep difficulties
  • unhook from difficult thoughts and emotions
  • improve relationships
  • overcome the experience of stigma.
Fatigue Specialist Physiotherapy
Our specialist physiotherapists have extensive experience in helping people overcome the challenges of living with ME/CFS. They can help you:

  • improve your energy management skills
  • better manage pain (which is a commonly associated symptom of ME/CFS)
  • assist with re-engaging with your values and goals
  • prepare/adjust for the physical challenges of employment and activities of daily living.
Royal Free London medical care for chronic fatigue symptoms
The Royal Free London fatigue team may provide medical care reviews to discuss new or altered fatigue symptoms, and the impact of other conditions you may have with your CFS/ME.
Click to expand...
https://www.royalfree.nhs.uk/servic...e-service/chronic-fatigue-syndrome-treatment/

recommended reading still

Fatigue
Overcoming chronic fatigue: a self-help guide using cognitive behavioural techniques (Mary Burgess and Trudie Chalder)
Coping better with chronic fatigue syndrome/myalgic encephalomyelitis: cognitive behaviour therapy for CFS/ME (The self-help series) (Bruce Fernie and Gabrielle Murphy)
 
Hi there,

I've had a referral to the Royal Free Fatigue service - I was able to access it through registering with a GP who serves the area of one of my family members.
Tbh the main reason I wanted to referral was to get a diagnosis so I can take part in DecodeME.
The GP (erroneously) believes they are unable / not allowed to make an ME diagnosis themself, and said that the Royal Free fatigue service can do so.

The referral was made 3rd August, I haven't heard anything from them yet or been given an appointment. I'm a little apprehensive but I'm hoping that they have caught up with where things are at now, and maybe I can prepare / steel myself before the first appointment to make sure we don't end up going down any of the classic dead-end / BPS etc roads. Maybe I can get some free counselling too.

Anyone had any experience with this service?
 
I have discussed or mentioned my ME/CFS symptoms at the Royal Free with consultant endocrinologists, urologists, cardiologists, urological surgeons and a loathsome neurologist. All the consultants seem to know each other.

Not a single one has ever said “hey, you should get a referral to our fatigue service, they are dead good and Dr X there is a genius”.
 
@josepdelafuente

NHS England has information on wait times: https://www.nhs.uk/nhs-services/hospitals/guide-to-nhs-waiting-times-in-england/

"The maximum waiting time for non-urgent, consultant-led treatments is 18 weeks from the day your appointment is booked through the NHS e-Referral Service, or when the hospital or service receives your referral letter."

There is a a link to a local search: https://www.myplannedcare.nhs.uk/ I don't know what department the RF ME/CFS clinic comes under but clicking through to "Pain Management" at the RF gives:

Average waiting time for first outpatient appointment at this hospital for this specialty = 30 weeks

as I might have said in other posts - "the NHS is in crisis !"
 
Shadrach Loom said:
I have discussed or mentioned my ME/CFS symptoms at the Royal Free with consultant endocrinologists, urologists, cardiologists, urological surgeons and a loathsome neurologist. All the consultants seem to know each other.

Not a single one has ever said “hey, you should get a referral to our fatigue service, they are dead good and Dr X there is a genius”.
Click to expand...
Haha, a ringing endorsement!
 
CRG said:
@josepdelafuente

NHS England has information on wait times: https://www.nhs.uk/nhs-services/hospitals/guide-to-nhs-waiting-times-in-england/

"The maximum waiting time for non-urgent, consultant-led treatments is 18 weeks from the day your appointment is booked through the NHS e-Referral Service, or when the hospital or service receives your referral letter."

There is a a link to a local search: https://www.myplannedcare.nhs.uk/ I don't know what department the RF ME/CFS clinic comes under but clicking through to "Pain Management" at the RF gives:

Average waiting time for first outpatient appointment at this hospital for this specialty = 30 weeks

as I might have said in other posts - "the NHS is in crisis !"
Click to expand...
Thanks for this info!
 
I received a call from my GP practice saying that if I wanted to instead be referred to the "Chronic Fatigue Syndrome & Fibromyalgia Service (RAS) - RLHIM - UCLH - RRV " it would be much quicker. Apparently if I haven't heard from them by Thurs 15th I should get in touch with them.

A quick look at their website suggests they might be quite BPS too. Hard to tell. I would mainly be after the diagnosis. Will find the thread about this service and continue there!
 
In October 2021, NICE (National Institute for Health and Care Excellence) released guidelines for the diagnosis and management of ME/CFS. To view the guidelines, please click here. The fatigue service welcomes the publication of these guidelines and continues to take steps to update the service based on their reccomendations.

The Royal Free London fatigue service provides assessment and treatment for people experiencing fatigue symptoms. Fatigue can present in different ways and the team is involved with the care and rehabilitation for people with:

Chronic fatigue syndrome (CFS), which is also known as:

  • Myalgic encephalopathy (ME)
  • ME/CFS
  • Post viral fatigue syndrome (PVFS)
Click to expand...
my bolding.
The treatment pages and recommended reading haven't changed.
The only patient leaflets: 1 on low fibre diet.

https://www.royalfree.nhs.uk/services/services-a-z/fatigue-service/#tab-overview
 
job ad
Band 7 Clinical or Counselling Psychologist
Applications are invited to apply for a part-time 0.6 WTE Band 7 experienced Clinical or Counselling psychologist to play a key role in The Fatigue Service at The Royal Free London NHS Foundation Trust.

This centre of excellence includes two psychology posts, a physiotherapist, an advanced practice physiotherapist (APP), a GP, a peer support worker, and an administrative team.

The GP and APP perform initial assessments, and diagnosis with a view to referring to the MDT for treatment of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) according to the evidence base and the NICE guidelines (2021).

You will be a HCPC, and BPS registered clinical or counselling psychologist; you will have at least two years relevant post registration experience. You will have the ability to prioritise and manage a complex workload, be proficient at patient assessments, have an experience in the delivery of 1-2-1 and group therapy and have some experience and preferably qualified to deliver clinical supervision.

Main duties of the job

To provide the highest quality specialist clinical/counselling psychology service to clients of the Fatigue Service team, and if appropriate across all sectors of care; providing specialist psychological assessment and therapy at the same time as offering advice and consultation on clients' psychological care to non-psychologist colleagues and to other non professional carers, working autonomously within professional guidelines and the overall framework of the team's policies and procedures.

To undertake research for audit, policy, service development, and research within the area served by the Fatigue team/service.
Click to expand...
https://healthjobs.bmj.com/job/104648/band-7-clinical-or-counselling-psychologist/

would be interesting to know if the number of psychologists at me/cfs clinics in the uk has gone up or down since the new guidelines.
 
same job being advertised. https://findajob.dwp.gov.uk/details/12509539
The website is still problematic:

Why do fatigue symptoms persist?
We do not know the cause of CFS/ME, but the Royal Free London fatigue service can address the factors that cause fatigue symptoms to persist, and reduce their impact on everyday life.

Some of the factors that might make fatigue symptoms feel worse are:

  • relapse brought about by excessive activity, aka ‘boom-bust’
  • a disturbed sleep pattern
  • difficult emotions, such as stress, anxiety and depression
  • ME/CFS can itself cause frustration, a sense of being isolated or feeling misunderstood, difficulty in relationships and an experience of stigma.
Click to expand...

Fatigue Specialist Psychology
Our clinical and counselling psychologists use various techniques (such as mindfulness, cognitive behavioural therapy, acceptance and commitment therapy and compassion focussed therapy) to help you better align with your personal values and live a meaningful life, in spite of fatigue’s challenges. They can also help you:

  • set and achieve goals
  • manage sleep difficulties
  • unhook from difficult thoughts and emotions
  • improve relationships
  • overcome the experience of stigma.
Click to expand...
https://www.royalfree.nhs.uk/servic...e-service/chronic-fatigue-syndrome-treatment/
 
Hang on - that's some serious confusion or misinformation on the Royal Free Fatigue Service site -

"ME/CFS can itself cause frustration, a sense of being isolated or feeling misunderstood, difficulty in relationships and an experience of stigma"



Who on earth wrote that dire gaslighting nonsense?


"ME/CFS can itself cause a sense of being isolated"

"ME/CFS can itself cause a sense of feeling misunderstood"

"ME/CFS can itself cause an experience of stigma"
 
Lou B Lou said:
Hang on - that's some serious confusion or misinformation on the Royal Free Fatigue Service site -

"ME/CFS can itself cause frustration, a sense of being isolated or feeling misunderstood, difficulty in relationships and an experience of stigma"



Who on earth wrote that dire gaslighting nonsense?


"ME/CFS can itself cause a sense of being isolated"

"ME/CFS can itself cause a sense of feeling misunderstood"

"ME/CFS can itself cause an experience of stigma"
Click to expand...


Do you mean like those people who create problems that didn't/shouldn't exist in order to claim to be a saviour that wants to fix it, rather than errm choosing not to create the bigotry in the first place and when you encounter it doing what normal people do and stating it is misinformation and castigating and calling out those propagating it?
 
Lou B Lou said:
Hang on - that's some serious confusion or misinformation on the Royal Free Fatigue Service site -

"ME/CFS can itself cause frustration, a sense of being isolated or feeling misunderstood, difficulty in relationships and an experience of stigma"



Who on earth wrote that dire gaslighting nonsense?


"ME/CFS can itself cause a sense of being isolated"

"ME/CFS can itself cause a sense of feeling misunderstood"

"ME/CFS can itself cause an experience of stigma"
Click to expand...
Ah! This is the medical equivalent of "a bullet flew through a window and hit someone". Just like that. It just flew. Out of nowhere. By no one.
 
Lou B Lou said:
Hang on - that's some serious confusion or misinformation on the Royal Free Fatigue Service site -

"ME/CFS can itself cause frustration, a sense of being isolated or feeling misunderstood, difficulty in relationships and an experience of stigma"



Who on earth wrote that dire gaslighting nonsense?


"ME/CFS can itself cause a sense of being isolated"

"ME/CFS can itself cause a sense of feeling misunderstood"

"ME/CFS can itself cause an experience of stigma"
Click to expand...


They missed off the following? : :whistle: ,
Shaggy It Wasn't Me (Official Music Video) (uncensored)
 
We do not know the cause of ME/CFS, but our fatigue service can address the factors that cause fatigue symptoms to persist and reduce their impact on everyday life.

Some of the factors that might make fatigue symptoms feel worse are:

  • Relapse brought about by excessive activity, also known as ‘boom-bust’.
  • A disturbed sleep pattern.
  • Difficult emotions, such as stress, anxiety and depression.
Click to expand...
 
We do not know the cause of ME/CFS, but our fatigue service can address the factors that cause fatigue symptoms to persist and reduce their impact on everyday life.

A slippery game with words there. Sliding casually from we don't know the cause of ME/CFS, into we know the factors perpetuating fatigue.
 
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