The North Wales ME Clinics

Due in a large part to the campaigning of this group we now have 2 ME clinics in North Wales.

The Connah`s Quay Clinic

There is a clinic in Caernarvon and also one on our doorstep in Connah's Quay, Flintshire. If you live in North Wales your GP can refer you to the nearest clinic to you.

In 1997 shortly after the Connah's Quay Clinic opened Dr Eric Beckett who was then a member of National Health Service at the ME/CFS Clinic in Connah's Quay, North Wales provided us with this account of the clinic.

I am going to give you a bit of an overview of ME, as we see it as clinicians, in Connah`s Quay, of the sort of service that we set up and give you an idea of how we approached the whole problem.

I worked partly as a GP, partly doing neurological sessions at Maelor Hospital until I volunteered to be part of this MD team. I have seen 9 patients with ME over a period of about 10 years, so if you gather that I’ve had about 3000 patients under my care, plus a busy neurological clinic and a couple of sessions, occupational therapy at the Maelor and one at Glan Clwyd, it gives you an idea of how much the individual practitioner sees of ME patients. I would estimate that maybe a GP has 3 or 4 patients with ME so the GP’s opportunities to build extensive experience with ME patients is really quite limited. Prior to the setting up of the team in Connahs Quay there has been absolutely no outlet for GP’s or neurologists or any other services to help ME patients. What happened was we saw patients with ME/CFS, the name doesn’t really matter. CFS is a way for researchers across the world to make sure that their research covers the same type of patient, it is a comparative thing.

What`s in a name?

Most people say they’ve got ME. I think the name has stuck, I am not going to get into arguments about appropriateness of names or definitions. From the point of view of hospital consultants or GPs. We have got a few people scattered around some 1500 miles with a knowledge of ME. We were in a fog about it and hadn’t seen many patients , we recognised that people were suffering, we recognised that a lot of people were suffering, carrying on working, doing their very best even whilst ill. We really didn’t know exactly what we could offer, we could certainly offer support and sympathy, belief and validation but we hadn’t got any way of saying `Yes, you definitely have got ME`, there might be another cause that we should look for and then secondly we had no centre that could offer any type of validated treatment.

A Multidisciplinary Team

The Health Authority with a lot of help and support from the Clwyd ME Support Group here, decided to set up a multi -disciplinary team to offer a service to ME sufferers. Basically it was advertised, I volunteered just as Paul Nickson did (Bangor) and the team has worked very well together. When we started out we didn’t know very much about ME, we had contact with other people - with programmes for ME sufferers especially Westcare, down at Bristol- a very good contact, but what we’ve learnt really is from contact with the patients as individuals. It enabled us to get a clearer idea in our minds as to exactly what we are dealing with. We look at ME, we know that it is a severe illness, we know that its debilitating, variable, people can be fine one day and the next day they suddenly slump. We also know that apart from the physical disability there are alterations in concentration, memory, sleep, many patients have got problems with pain as a major component.

How does this affect my patients?

The effects of ME are very serious and very limiting. In a practical day to day effect, first of all is employment. Most of the people we`ve seen with ME have been very productive, very busy, very hard-working people. Immediately the illness begins their employment is affected, their relationships are affected. They are people who are very central to their families` lives. Day to day activities are affected, it becomes very unpredictable. One day you are OK, the next day you may not be, and it is very difficult to schedule your life

Unpredictability

So we are dealing here with an illness that causes a great of unpredictability in people`s lives. Looking at the general effect that illness has, its not just ME but all chronic illnesses that have this effect. Most people feel very frustrated, they are not what they used to be, they are depressed and anxious with no treatment. Research is very difficult, because there is no actual definite cause. You can`t work and your income suffers. The benefits system gives a certain amount of support, but not enough. In a global way peoples` lives are severely affected by the illness.

Personal Experience

We gain personal experience, we learn from seeing our patients and build up experience, and look at the factors leading to ME. Viral illnesses, periods of great stress, bereavement, accumulated stress, severe physical illnesses with poor recovery. Some patients, for no apparent reason we can tell develop the illness.

No Diagnostic Test

There is no diagnostic test but it isn`t particularly important. We have patients with epilepsy, and there are no diagnostic tests for that. It is down to the doctor`s history, and it is down to them to LISTEN. We know that fatigue as a symptom is very common in the population. In Medical School we are taught to exclude common treatable causes of fatigue such as anaemia, hypo-thyroid, and heart failure. There are about 3/400 different causes of fatigue. We look at diagnosis by history and listening to the patient, this is of prime importance. We believe what the patient says, and we listen to them. We rule out other causes that need some type of specific treatment. If people have poor thyroid function, they need to have thyroxine.

GP Referrals

We looked at how to find patients with ME, and decided we wanted help from the GP, about the population of the area. We contacted the GP`s and sent out information on how to diagnose ME.

Because each patient has got an individual GP we decided to ask for specialist referrals, and say we would be grateful if they would take responsibility, and decide whether they wanted us to see this patient. That may change sometime in the future, but as it is we have to have a practical approach. So the GP examines the patient does basic history, basic blood tests and rules out some of the more common causes of fatigue. The patient is referred to us by their GP.

And then the day arrives and you come to meet us at the clinic.