RiME: Clinics – Yorkshire

Campaigning for Research into ME (RiME)  www.rime.me.uk 

Clinics – Yorkshire

Seacroft Centre Leeds

Referral is by GP. What seems to be a standard letter 1/9/08 signed by Sue Pemberton, Occupational Therapist, says:

… CFS/ME is a diagnosis by exclusion and normally the GP will have completed a range of standard tests to exclude other possible causes of ongoing and chronic fatigue, including thyroid problems, diabetes, current infection etc. When the GP refers to our service we ask to see results from these tests to ensure that all the correct tests have been completed and no abnormalities have been detected. Because there are no specific diagnostic tests which identify CFS/ME we complete a clinical assessment when patients first attend our clinic including details of the range and pattern of symptoms that people are experiencing to enable us to confirm a diagnosis of CFS/ME. This assessment would normally be completed by a member of the team…

Worryingly, the accompanying booklet ‘Leeds and West yorks CFS/ME Service’, says P.1:

What is CFS/ME?

…it (CFS/ME) is a diagnosis that does not fit under one specific medical specialty and a variety of different medical specialists provide services in different areas of the country. We use CFS/ME which has been the most widely recognised and used in the CMO’s Report and NICE.

The main symptom of CFS/ME is a feeling of unusual and excessive tiredness that is characteristically made much worse after any activity. The fatigue is usually both physical and mental. The fatigue would be of new onset rather than life long and impacts on your life to the extent that you have to cut down significantly on what you do day to day… By definition, the diagnosis of CFS/ME is only made after you have had the symptoms for at least 6 months…

What causes CFS/ME?

There are paragraphs on Infection hypothesis, Autonomic changes, Causes without clear supporting evidence, and Depression/Anxiety. The latter paragraph says:

…When you have had to stop doing something from fatigue for some time, such as work, socialising or even simple day to day tasks like shopping, it is easy to lose confidence and feel anxious about facing these tasks. Anxiety symptoms can affect your sleep or appetite and make it harder to get the rest and fuel you need to recover from the illness. If these symptoms escalate to the point of becoming an anxiety disorder, they will in themselves worsen the many symptoms of CFS/ME and need additional treatment.

A Holistic View

It is increasingly recognised that CFS/ME is a condition which may have a number of different triggers or causation that leads to a common condition. The triggers can be physical (eg infection) or a combination with both physical and emotional stressors. Therefore, our view is that going down the physical vs psychological debate is unhelpful, as it is not possible to split ourselves down the middle and separate them out. It is more important to view the person holistically, recognising that more than one factor may play a role in either perpetuating the condition or equally holding people back from recovery. For instance, an often-recognised scenario is of someone already under stress who develops a viral infection, which triggers physical changes seen in CFS/ME. This can then leaf to further stress or a depressive reaction that may worsen many of the symptoms and can develop into a vicious circle.

How is CFS/ME treated?

Ed. – It gives the impression that ME can be treated. It does not highlight the need for biomedical research.

…there is no specific single medical treatment for CFS/ME. Many different treatments have been suggested although few have been thoroughly tested. However, there is now good evidence for mangement strategies, which enable people to control and improve their fatigue levels by addressing how energy is used, and manage other factors which impact upon fatigue, as well as strategies to control troublesome symptoms. It also appears that these strategies can help to restore some of the imbalances in the body that contribute to the condition.

We believe in patients being involved in treatment and doing as much as they can to help themselves

Approaches to Management

…Grading Activity – This is a way of planning your daily activities and gradually increasing what you can do. In CFS it is helpful to avoid cycles of ‘Boom and Slump’ and grading your activity allows you to monitor your energy levels and plan your daily activities to avoid periods of fatigue.

Lifestyle Management – This looks at other areas you might have problems with, for example exercise, diet and sleeping. We can offer you advice and support in dealing with these issues and with other factors that might be impacting upon your fatigue, such as work or family life…

Emotional Difficulties and Relationships …It can be helpful for you to look at the effects that the illness has had upon your thoughts and behaviour and find ways of dealing with them so that they don’t get you down further

CBT – Some patients find it hard to apply management strategies for chronic fatigue because of low mood, anxiety, personality traits or a particular thinking style that make it hard for them to make step by step progress. CBT is a therapy that looks at how we think, feel, behave and experience symptoms. These four elements may all interact to create a spiral of symptoms. CBT will enable an individual to identify which part of the spiral they are experiencing problems with and to develop strategies that can help people get out of the loop….

Coping with psychological impact of the condition – Some patients have a complex combination of difficulties, complicating their recovery form CFS/ME. Liaison psychiatrists are available to offer detailed assessments of each person’s difficulties in a holistic manner, to a make sense of how different problems interact. If significant depression or anxiety play an additional role in holding up recovery from CFS/ME, antidepressants or CBT may be necessary in addition to the management of fatigue in order to make sustained progress.

Inpatient Service – For the small number of patients who need this, patients can be admitted to a specialist liaison psychiatry unit on Ward 40 at Leeds General Infirmary. Patients with a variety of health problems are admitted to this 8 bedded facility, which can offer assessment and rehabilitation form a team of staff, including nurses, occupational therapists and physiotherapist, for people with a range of physical and pychological needs.

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Selected Comments

2009 …talking to an ME patient in Leeds. We both agreed that we couldn’t see any use or help in attending the Seacroft Centre (I don’t get good reports on Sheffield, either). I fail to see how it could help me. The last thing I want is to keep a diary then discuss it with a nurse or OT who probably doesn’t understand what ME is (given the misleading information disseminated by the Health Dept). Too, it is not about the illness described by G93.3 or the Canadian Criteria. I am disappointed, therefore, that the Leeds Group is supporting it. One wonders if they are able to see the larger picture. The clinics are the end of a roadmap which encompasses the CMO Report, York Review 1, Wessely Literature… Support the clinics, then you support those processes that led to their conception. That Sue Pemberton says the Leeds Clinic ‘helps’ 90% of patients means nothing in the context of ME. First, the majority who attend probably don’t have ME; the clinics are a dumping ground for GPs who have patients with ‘unexplained symptoms’. Second, what does ‘help’ mean; little more than a chat perhaps; counselling can be arranged anyway on the NHS via GPs. Before one knows it, the Govt will have changed the ‘help’ to ‘treatment’ and this will undermine the case for publicly funded biomedical research…

Leeds 2009

Correct treatment for any condition should be based on correct diagnosis. Diagnosis should be reached only after thorough, scientific, physical research…

The Leeds + W. Yorks CFS/ME service fails as do all such services throughout the country, by having too wide a remit. Their approach means they include a variety of non-MEs who may – and it seems, often do, improve. People with ME do not.

This is a return to the past. Diseases such as MS, Parkinsons, Asthma, Epilepsy and other ill-understood conditions, were confidently stated to be psychiatric in origin. As clinical research, revealed the physical causes, the psychiatric approach silently disappeared….

I am disappointed to hear that the Leeds Group is supporting the service. One wonders if it able to see the larger picture…

Huddersfield 2008

Afraid I went to Seacroft (CFS Leeds Centre). There was no biomedical treatment. They gave me a large book that I had to write in what time I got up, how I felt, what time I had my breakfast, how long it took to get showered and dressed, then how I felt… Think they called it PACING! Just not enough hours in the day! I went twice, the second time the ambulance brought me home it took 2 and a half hrs (should take 45/50mins), consequently I was shattered and relapsed… I never went again! after 22yrs of NHS farce I am totally fed up as is everyone else I know with ME…

Castleford 2007

Dear Dr Turner,

… father of a young ME Sufferer aged 25 who has suffered.. for the past 15 years. During this time she has had to put up with disbelief from the medical and educational establishments.

Various management theories and treatments have been suggested and tried to no avail… counselling at the Leeds CFS Clinic, to help her come to terms with her fatigue has not been of.. great benefit, she still suffers from the physical aspects of ME, and the pain and depression that goes with it continues, ignoring… what is really needed

… the £8.5 million spent on such management would have been far better spent on biomedical research. I would be grateful if you would mention this at the APPG Meeting….

Selby 2009

…I have concerns about the Seacroft Centre Leeds in that it is not about G93.3 ME or the Canadian Criteria. There is a roadmap here that goes back to the CMO Report and York Review which were based substantially on ‘Wessely psychiatry’. Back in 2003 I spoke at the launch of Martin Walker’s book ‘skewed’ which well described the flaws in the process. We are now reaping the results…

The footprint is clear to see in clinics such as Leeds. For example p.7 of the booklet:

… CBT is a therapy that looks at how we think, feel, behave and experience physical symptoms. These four elements may all interact to create a spiral of difficulties. CBT will enable an individual to identify which part of the spiral they are experiencing problems with and to develop strategies that can help people get out of the loop…

Yuk… I don’t relate to this at all. Effective treatment for ME patients will only come through biomedical research. If the Government is serious about helping ME patients, this is where they need to concentrate their efforts…

York 2009

I agree the way forward is for more funding from the Government for bio-medical research. Eventually the people of this country should be entitled to benefit from the knowledge and understanding of ME/CFS and its neurological symptoms as detailed in the Canadian Consensus Document.

Meanwhile we have to live with NICE clinical guideline 53, which perpetuates the historical situation in this country that ME/CFS is a psychological/psychiatric disorder. Healthcare professionals have not been given any information to allow them to change the historical view of the condition….

There is over 60 years of worldwide research available to show that ME/CFS as advised by the WHO in 1969 is a neurological condition. The Department of Health recognised in 1987 that it was a physical organic disorder.

Constructive investigations are needed to understand why ME/CFS affects the nervous system. When the healthcare professionals start to understand the diverse nature of the symptoms, they will acknowledge the neurological impact of the disease. Hopefully the easy route that has historically been taken in this country, diagnosing ME/CFS sufferers with psychiatric problems will be overcome. We will start to receive some constructive medical help.

Castleford 2009

The CFS Clinic at Leeds may be doing a good job for CFS and may have better services but are we talking about fatigue or ME. Two entirely different illnesses. I can’t see how a group can be satisfied with a service that only does half the job, unless they believe that half a loaf is better than none.

There is still room for improvement, much room for vast improvement.

Secretary of Leeds + District ME Group PO Box 419 Leeds LS6 9AL 2009

… I have asked around our members and the general consensus is that the Leeds Chronic Fatigue Clinic is doing a good job, and is a lot better than it used to be. We work with them on their patient forums and helped in their campaign to restore their funding shortfall. They have now been able to reinstate their children and young person’s service, which we have also been campaiging for.

We feel that their introductory booklet covers the basics of their condition. We accept that Chronic Fatigue covers a multitude of conditions but feel that since patients have to be referred by their GP, and are then reassessed at the clinic, that many other conditions will be screened out at these stages.

They provide a multitude of services and are easily accessed by patients who have experienced a relapse etc. Their waiting list is not as long as it used to be and is currently quite short.

The only drawback experienced by most patients is its location at Seacroft Hospital. It is based in a mental health building and parking is not very good…

Sheffield Clinic

… I was the leader of MEND (North Derbys ME Group) from 1992 through the 1990’s. It had a membership of 250.

Please note that the title of the Group was Myalgic Enacephalomyelitis (ME).

The only way forward to help people with ME is proper research into the physical causes and disease process of the neurological illness ME, as defined by WHO G.93.3 and the Canadian Criteria.

Re. the new centres which have been set up: The nearest is the Sheffield CNCC which offers CBT – P.35 of ‘CFS/ME Service Investment Program Report 2004-6’, authored by Prof. Pinching + Pat Noons, (enclosed) – I can’t relate to it at all.

Not only is this form of treatment inappropriate to ME patients, but I feel the results will be ‘skewed’ (imprecise admittance criteria) and used by the Government as an excuse not to research the physical causes of ME…

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Paul Davis

RiME    www.rime.me.uk       rimexx@tiscali.co.uk

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