United Kingdom: NHS Lancashire and South Cumbria ME/CFS

Sly Saint · Dec 20, 2021

Hard to tell if it has been updated or not as it's quite difficult to navigate

you have this
CLMW Persistent Pain Service
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is characterised by debilitating fatigue and comprises a range of symptoms that can include, malaise, headaches, sleep disturbances, difficulties with memory, concentration and muscle pain. There are many different potential aetiologies but the diverse nature of the symptoms cannot yet be fully explained.
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Diagnostic criteria for CFS
Debilitating persistent or relapsing fatigue for at least four months, not life-long.

- Not the result of ongoing exertion and not substantially alleviated by rest.

- Severe enough to cause substantial reductions in previous levels of occupation, educational, social or personal activities.

- At least four of the following symptoms persisted or recurred during 4 or more consecutive months of illness and did not predate the fatigue: Impaired memory or concentration; Sore throat; Tender lymph nodes (symptom); Muscle pain; Pain in several joints without swelling or redness; Headache; Unrefreshing sleep; Feeling ill after exertion

- No clinical evidence or cause for the fatigue: 1) Organ failure (e.g. Emphysema, Cirrhosis, cardiac Chronic renal failure); 2) Chronic infections; 3) Rheumatic and chronic inflammatory diseases; 4) major neurological diseases; 5) Systemic treatment for neoplasms; 6)Untreated endocrine diseases; 7) primary sleep disorders; 8) Obesity (BMI>40); 9) Alcohol/ substance abuse; 10)Reversible causes of fatigue such as medications, infections or recent major surgery; 11) Psychiatric conditions (e.g. melancholic depression, bipolar disorder, Psychoses, eating disorder)

- Routine investigations do not suggest a cause for fatigue: FBC, ESR, U&E, LFT’S, Calcium, Phosphate, Random glucose, Thyroid function, coeliac serology (Endomysial abs or TG), urinalysis, serum creatinine.

The team focuses upon the management and support for those previously diagnosed with Chronic Fatigue Syndrome. The main aims of the service are to optimise supported self-management.

Throughout the Central Lancashire Moving Well Service, our partnerships with support groups, volun-teers, and third sector organisations are key to establishing our self-management network.
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Top things for GPs to know about Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis
- CFS/ME is a neurological disorder.

- Sleeping more does not help patients recover quicker and can exacerbate symptoms.

- Diagnosis of CFS/ME is by a process of elimination by having undergone all necessary blood tests and investigations to rule out all other causes of fatigue. There is not a diagnostic tool/ test available. The patient has had to have had symptoms of debilitating fatigue for more than 4 months.

- Prescribing exercise is dangerous to a patient with CFS/ME. Even going out for a short walk.

- Medication including painkillers can exacerbate symptoms as the immune system is sensitive. Amitriptyline 20mg has had positive affect on patients with CFS/ME at night as assist in reducing muscular discomfort and aiding sleep.

- The treatment and recovery for CFS/ME is long term, intervention is normally up to 1 year.

- The intervention includes life style and routine changes including graded activity, CBT and Occupational Therapy intervention. Patients have to be motivated and disciplined to engage with therapy.

- CFS/ME is four time more common in women than men.

- Patients with CFS/ME are motivated and want to conduct activity but are physically unable to. They are not usually depressed.
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https://www.lscft.nhs.uk/clmw-persistant-pain-service

Then there is the Central Lancashire Moving Well Service

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)

What is CFS/ME?
Myalgic Encephalomyelitis (ME), Post Viral Fatigue Syndrome (PVFS), and Chronic Fatigue Syndrome (CFS) are some of the names used to describe a syndrome, which is probably a similar type of condition and whose main feature is excessive fatigue.

CFS/ME is the preferred term used in this information. It more accurately describes the illness and is now officially recognised. CFS/ME affects people in different ways and no two people experience the illness in the same way. The main feature is persistent physical and mental fatigue, which differs from normal tiredness. It is not adequately relieved by rest and is usually out of proportion to the activity undertaken.

A range of other symptoms often accompany the fatigue. These include muscle and/or joint pain, headaches, swollen glands and recurring infections often sore throats. Some people have feelings of dizziness and temperature fluctuations. There are frequently some difficulties with memory and concentration and many people experience problems with their sleep. They often have vivid dreams and wake feeling unrefreshed. Many people describe sensitivity to some foods and medicines.

Currently there is no specific diagnostic test for ME/CFS. However, there is a clear protocol that is used to confirm the diagnosis. A diagnosis is made by excluding around 40 other conditions that cause fatigue. Your GP will have arranged a variety of blood tests, liver function tests and routine biochemistry tests prior to attendance at the clinic.

The ME/CFS Service aims to provide supportive, holistic patient-centred advice to aid acceptance, education and self-management for adults with mild or moderate ME/CFS in Central Lancashire.

Sessions are run in clinics in Preston and Chorley and include self management interventions such as pacing, activity, management, sleep hygiene and purposeful rest.
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and there is a video of a patients story.

https://www.lscft.nhs.uk/clmw-cfsme

good news is @PhysiosforME are listed under resources, but a lot of the other resources links are for relaxation and mindfulness

https://www.lscft.nhs.uk/cfsme-useful-resources

its difficult to tell if any amendments have been made since the new guidelines (which don't appear to be linked to anywhere), but I can't find any reference to PEM.

Ariel · Dec 20, 2021

How can a website seriously purport to be about ME/CFS without reference to PEM?

Amw66 · Dec 20, 2021

Ariel said: ↑

How can a website seriously purport to be about ME/CFS without reference to PEM?
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This needs to be a prioritised educational outreach task for charities .

Sly Saint · Sep 1, 2023

job ad
Senior Clinical Psychologist
Lancashire & South Cumbria NHS Foundation Trust

The successful applicant will assess and manage a caseload of patients with ME/CFS both on a 1:1 basis and also working alongside MDT colleagues, offering a range of high quality, evidence-based psychological interventions, supervision, consultation, teaching and clinical leadership. The applicant will also take a lead role in the delivery of group interventions for individuals with ME/CFS.
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Experience
Essential

Experience of specialist psychological assessment and treatment of patients across a range of care settings, including outpatient, community, primary care and in patient settings.

Experience of working with a wide variety of patient groups, across the whole life course presenting problems that reflect the full range of clinical severity including maintaining a high degree of professionalism in the face of highly emotive and distressing problems, verbal abuse and the threat of physical abuse.

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https://www.jobs.nhs.uk/candidate/jobadvert/C9351-23-1484?language=&page=57&sort=publicationDateDesc

Ash · Sep 1, 2023

Oh dear!
Forgot to edit the template once again is it?

Simbindi · Sep 1, 2023

offering a range of high quality, evidence-based psychological interventions,
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For what? Not ME/CFS.

Oh dear, have I just verba11y abused a professiona1 by stating this?

DigitalDrifter · Sep 2, 2023

Sly Saint said: ↑

Sleeping more does not help patients recover quicker and can exacerbate symptoms.
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What planet are they living upon? Sleeping more always makes me recover quicker, losing sleep exacerbates my condition.

Simbindi · Sep 7, 2023

Char1es has written to the Trust.

https://meassociation.org.uk/2023/0...natory-and-offensive-wording-in-a-job-advert/

Joan Crawford · Sep 7, 2023

Ash said: ↑

Oh dear!
Forgot to edit the template once again is it?
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Looks like it

Joan Crawford · Sep 7, 2023

Dunno what a Moving Well service has to do with ME. Baffling

Trish · Sep 7, 2023

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United Kingdom: NHS Lancashire and South Cumbria ME/CFS

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Sly Saint Senior Member (Voting Rights)

Ariel Senior Member (Voting Rights)

Amw66 Senior Member (Voting Rights)

Sly Saint Senior Member (Voting Rights)

Ash Senior Member (Voting Rights)

Simbindi Senior Member (Voting Rights)

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Simbindi Senior Member (Voting Rights)

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