Action for ME (AfME) produced the following article in Spring 2006 Interaction. Reporting on the development and implementation of new CFS/ME services across the Country, they chose to start with the North East & North Cumbria region. Richard Dunn travelled north and interviewed both Dr Gavin Spickett (the Clinical Champion) and Jennifer Elliott (patient representative) for both a local team and regional clinical network centre perspective. We thank Richard and AfME for their interest and for permission to reproduce the article in full.

Interview: The Clinical Champion

Consultant Immunologist at the Royal Victoria Infirmary in Newcastle, Dr Gavin Spickett is one of the ‘Clinical Champions’ for the new NHS CFS/M.E. services. Representing the North East of England, and a co-lead clinician for the North Tyne Local Multidisciplinary Team (LMDT), he talks to Richard Dunn about his understanding of the illness, current research, developments in the new NHS services and how doctors can better support patients.

How did you come to have an interest in this illness?
I can trace it back to the mid ‘80s when I was doing research at Northwick Park Hospital in Harrow and we started finding abnormalities in markers for immune function in chronically fatigued patients. This led to a small publication, and at the time there wasn’t a great deal of work about immunological abnormalities in CFS patients.

I continued seeing CFS patients when I took up my consultant post in Newcastle in 1991 but because of the increasing workload and lack of any local funding, we were prevented from seeing patients by the Trust for a period of time. We had been submitting repeated proposals for specialist services since about 1995 but it just hadn’t been a priority until the central funding became available.

What’s your understanding of the disease process in M.E./CFS? Do you think that more than one illness is included under the spectrum of the ‘syndrome’?
I’m absolutely convinced that there isn’t the same disease process for everyone. Fatigue is a feature of many different illness processes – if you like it’s the final common pathway. The body only has a limited number of ways of responding to certain sorts of infectious, inflammatory insults. And I don’t believe that we fully understand the basic mechanisms of what causes people to feel fatigue; the physiology of what’s going on inside that makes you feel that way. CFS fatigue is very different, and much more extreme, than the kind of tiredness felt by a healthy person. For example, we can pinpoint all sorts of interesting abnormalities in various body systems of CFS patients, particularly the neuro-endocrine systems which link the brain and hormonal pathways. These can be identified on various imaging scans, but it’s not clear whether they’re the cause of the illness or not.

Another complication is that in a group of people who satisfy the criteria of CFS, not every patient presents in an identical way: you’ve got some where fatigue is the main presenting complaint, and another group where muscle pains, headache and concentration problems are the major symptoms, so there is clearly a spectrum of disease. There’s also the sub-group that gets identified as having fibromyalgia (widespread muscle pain and tenderness), but there’s a very large overlap between that and CFS. In fact I suspect that in due course we’ll probably identify these two groups as having predominantly the same illness.

Is knowing what particular trigger led to your illness important?
Almost certainly not, on the basis of the knowledge we have now. There’s a strong suspicion that the illness may be triggered off by certain infections, but probably half of the patients we see don’t have any distinguishable infective element to the onset of the illness. There are lots of triggers, many of which we don’t yet understand. I liken it a bit to being victim of a ‘hit-and-run’: the damage is done and will last for months or years, but the cause has disappeared into the distance. Tracking it down doesn’t make any difference to how you then manage the resulting problem. However, as we get more research done, that theory may be proven wrong!

Are you involved with any research?
I’m collaborating with a team who are looking at fatigue in the context of liver disease and applying some complex tests of autonomic [nervous system] function to look at the physiological changes in fatigued patients, e.g. cardiac reflexes, and what happens to heart rate and blood pressure. They’ve already identified some very significant and reproducible abnormalities in fatigued patients with liver disease and what they now want to do is look at patients with CFS to see if they can identify the same types of abnormalities or if they are different. This is about trying to get to the root causes of physiological changes in fatigued patients.

What’s your opinion of the ongoing work on gene expression being done in London and Glasgow and the claim that this may lead to a diagnostic test and better drug treatments?
One of the caveats about this work comes back to “is it one disease or many?” If it’s many diseases then you’re going to pick out sub-groups who may have a particular genetic abnormality and others where it may be something completely different. Work on gene expression is a first step, but like all science this may go nowhere or it may be a major breakthrough. I think it’s too soon to say for sure where it will lead at the moment.

Are there any other promising tests on the horizon?
From the patients’ point of view there is no obvious diagnostic test which is going to be reliable and usable in clinical practice on the immediate horizon. At the moment the best diagnostic test is a skilled physician. The problem is that many people don’t have access to a skilled physician – and I think that’s the most pressing issue right now.

Will the new structure for specialist NHS services across England have any impact on research?
I think so because a standard template for data collection is being put in place to try and make sure that everyone treating patients in the new centres collects compatible data. This will facilitate research programs that can then identify particular patterns of disease, and from here we can start to see if therapeutic interventions really do help.

How do you feel about doctors that don't think CFS/M.E. is a “real”' illness or that patients are exaggerating their symptoms?
There are plenty of hospital doctors and GPs who think this is some sort of malingering, but in my experience people who are out to gain benefit by feigning ill health are actually very rare in the context of CFS. I think in twenty years I’ve seen just one or two where I was suspicious. For the vast majority of the people I see, this is a devastating state of affairs. They’re often people with good jobs, who are suddenly unable deliver that level of work and lose their employment, suffering a catastrophic decline in their personal affairs.

One of the things that makes me very angry is that doctors tend to dismiss things they can’t explain. I think that’s a serious error. It’s perfectly acceptable for a doctor to say: “I don’t know what the cause is but nonetheless I understand what your symptoms are and that they are real”. Even if we can’t explain the cause, that doesn’t mean to say we can’t help you. There is always something you can do for people. It’s the duty of doctors to help CFS patients, not to just dismiss them as time wasters.

What are the priorities of your local multi-disciplinary team?
The first and main area to tackle is to get CFS patients seen by people who are interested in the disease and sympathetic to it, and to give the team enough resources to manage the problems that these patients have. I allow one hour per patient with suspected CFS for the consultation, whereas a typical GP consultation lasts just seven minutes - that’s a big difference.
At the moment the clinicians act as gatekeepers to the therapy services – a team of occupational therapists, physiotherapists and psychologists, providing support services for lifestyle management. But we want to be as certain as we can that people who go to the therapists do have properly diagnosed CFS and that the therapy is going to be valuable to them.
At the moment because of the limited resources we’re not undertaking long-term medical follow-up. We see patients once, get them started on treatments and then give the GPs a plan of management, and that will be supported if necessary or if appropriate by cognitive behaviour therapy, exercise therapy or support from occupational therapy for dealing with the activities of daily living.

What do GPs have to do before patients can be referred to you?
We don’t see a patient until they’ve had the basic blood screen recommended in the College’s report [ref 1], plus a test for coeliac disease [gluten intolerance]. Incidence of coeliac disease is increased in CFS and fatigue is one of the early signs; as long as you are eating wheat in your diet there is now a very specific and sensitive blood test for this. It’s important to identify these people as it’s treatable and there are long-term consequences for failing to diagnose it. We set the bar quite high in terms of accessing our specialist CFS service, but as a result patients are usually being seen within 2-4 weeks of being referred. If we’re going to make any impact on this illness then we need to see the patients early when they meet the criteria for CFS and get them into a therapeutic program quickly.

In a recent article you said that almost a quarter of patients referred to your clinic with ‘chronic fatigue’ were found to have alternative diagnoses. Could you tell us more about this finding?
This related to an audit of 73 patients referred to us throughout 1997 with the primary question of “does this person have CFS?” where 24% turned out to have something else causing their symptoms [refs 2 and 3].
About 7% had primary depressive illness, and about 17% had other conditions, for example sleep apnoea, toxoplasmosis, or parvovirus. Excluding other conditions isn’t rocket science - it’s about having the time to take careful detailed histories and examine patients to reach the right diagnosis, and then getting appropriate treatment for these other diagnoses.
We’re still getting referred a significant proportion of patients who turn out to have other medical problems. This is not a criticism of GPs – they are identifying patients who fall into a category of chronic fatigue but they do not have the time to do a detailed analysis.
It’s crucial that people are aware of which other conditions can mimic CFS and that’s where medical input from experienced general physicians is most important.

Are there any particular drug treatments that you find helpful in managing this condition?
I’ve become very disillusioned with the use of drug therapy to affect CFS directly so my use of medications at the moment is around symptom relief.
I’m sure proper drug trials are going to come along, arising out of people’s particular interests and possibly a need to evaluate some of the therapies that are being bandied around as potentially beneficial. And if or when we get to understand what the primary cause is, then it will become much simpler to design more effective medical therapies.

For many people with M.E./CFS, access to benefits is a big problem – do you offer any help with that, for instance if they’re turned down and have to go to appeal?
When you go out and talk to the patient groups, accessing benefits is one of the things that causes most aggravation. In this area most claims from patients with CFS will be rejected if they put the GP down as a contact rather than a specialist. Patients have actually been told their claims have been rejected because they haven’t been seen by a consultant. So I am happy to deal with filling in the forms for the patients for both incapacity benefit and disability living allowance, and if necessary to write appropriately worded letters to assist with appeals.

How do you deal with people who’ve been ill for a long time?
We see patients in this situation if, for example, the GP has concerns that they’re deteriorating and wants to know whether something else is happening or, if it’s part of CFS, whether there’s anything else that could be done. And we’ll obviously see people where there are issues about refusal of benefit.
But the question of what the new Department of Health funding provides for long-standing patients is one that that we haven’t fully resolved. So many patients are out there with their chronic disability without support or guidance as the GP doesn’t feel there’s much they can do. The excellent patient support collaborative M.E. North East provides some help but there are questions that they can’t answer of a medical or therapy nature. I think that in time we need to try and set up some form of professionally-provided local telephone support service giving information to those affected.

What have been the main achievements – and frustrations - in setting up the new services?
Being funded to offer a service to CFS patients given that we weren’t allowed to do so for years is hugely valuable, but this is only the start of a long process. My main frustration is not having enough money to offer more locally-based services including outreach, coupled with too much bureaucracy. This has meant that instead of getting services up and running in six months, it’s taken almost two years.

What are your aspirations for the next few years?
We need to expand the service and start training local GPs to better diagnose and support CFS patients. And we need to consider how best to support the long term chronically unwell patients. This is a condition that needs to be managed in the community but we need to make sure that appropriate medical support is properly established. And eventually it would be nice if there was some sort of in-patient assessment unit, but I’m afraid I think that is a long way off.

References :
1. Chronic Fatigue Syndrome, report of a joint working group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners, October 1996.
2. C. A. Bethane et al 2003, An audit of the investigation of patients with suspected Chronic Fatigue Syndrome, CPD Bulletin Immunology and Allergy, 3(2), pp51-53.
3. G. Spickett, 2005, Pitfalls to look out for when diagnosing CFS, Pulse, 13 August 2005.

The Patient Representative Perspective

Jennifer Elliott from the charity M.E. North East helps represent the patient voice in negotiations with local healthcare providers over specialist CFS/M.E. services. She shares her perspective on what it’s like to be involved in the process and illustrates what can be achieved through ‘patient power’

M.E. North East brings together local support group representatives in this part of the country, both to support one another and campaign with a united and more powerful voice. We have secured funds for three full-time posts through charitable grants and foundations, and would like to see this regional model replicated across the country.

Both Dr Spickett and M.E. North East had been fighting to get a specialist regional service set up here for ten years when the announcement was finally made in 2003 that new funds would be made available. We immediately joined forces to try and get a slice of the pie. First of all, our charity surveyed its members to find out what their service priorities were if we secured funds for the North East. These results were shared with the regional CFS/M.E. Planning Group. The key findings identified the need for GP training, access to firm medical diagnosis, and assurance that new services would not be based in Mental Health.

We have a good working relationship with Dr Spickett and all the local teams. Along with our Chairman I sit on the steering group of the Clinical Network Coordinating Centre (CNCC) which deals with planning issues within the region. I also sit with other patient reps on the steering groups of the four local multi-disciplinary teams (LMDTs) for CFS, which deal with the implementation of services.

One example of collaboration has been that in three of the LMDTs, once the new therapists have come into post, we’ve arranged meetings between them and the patient reps. It’s been a case of the therapists saying: “you tell me what you want” and patient reps responding: “we don’t want A, B and C” or: “I’m worried that this is going to have a psychiatric sort of lean, and CBT scares me rigid”. Patients have come away from these meetings saying things like: “Some of my fears have been put to bed because having met the people who are going to provide the service, I feel I can trust them and work with them.”

It’s been quite a steep learning curve as it’s a new thing for both the patients and the professionals to work so closely together. But we’ve had the opportunity to have our voice heard and be part of the decision-making process all the way through. Patient power around the table has led to joint decisions about referral criteria, care pathways and importantly, not to base services in Mental Health units.

We will also play a role in monitoring services as they’ll only survive if they’re perceived as useful, and patient feedback is a key measure of that. Overall I feel that we’ve won an awful lot, and moved on vastly since 2003. Everyone is really excited about what has been achieved and what we can push for in the future.

It’s essential that the collaboration between the regional CNCC’s continues, so there can be a sharing of new ideas, problems and issues. This will also give M.E. patient reps a national voice back to ministers, because it’s been absolutely clear that we’ve only got to where we are through patient power. Knowing that gives members the confidence to continue shouting for more, because we’re only just on the first rung of the ladder.

M.E. North East has a website at: menortheast.org; e-mail: [email protected] or call: 0191 389 2222/388 4228.