ME Positive

Interview with Dr Vinod Patel


Dr Vinod Patel

Dr Vinod Patel BSc (Hons), MB ChB, MD FRCP DRCOG MRCGP
Associate Clinical Professor, Honorary Consultant Physician
Endocrinology and Diabetes, General Medicine
George Elliot Hospital NHS Trust
Warwick Medical School,
University of Warwick

Dr Vinod Patel our group patron was kind enough to give an exclusive interview to ME Positive for the February 2010 edition of our group newsletter. The following is a slightly revised version of that article writen by our newsletter editor Derek Benyon. Dr Rajiv Nair (Consultant Physician in the ME/CFS Clinic) is also thanked for his contribution to the treatments section of the interview.

An Introduction to Dr Patel and his Clinic

Experience in Treating ME/CFS at the George Elliot Hospital


Introduction to Dr Patel

Dr Vinod Patel is Associate Professor in Clinical Skills at Warwick Medical School, University of Warwick. He is also Honorary Consultant Physician in Endocrinology and Diabetes, Acute Medicine and Medical Obstetrics at the George Eliot Hospital NHS Trust in Nuneaton, Warwickshire. He trained in Endocrinology and Diabetes at the Hammersmith and the Royal London hospitals. He obtained a Doctorate on Haemodynamic Factors in the Pathogenesis of Diabetic Retinopathy from the University of London and has multiple papers arising from the work. Whilst his specialist area of research is prevention of diabetic complications, he has a passion for clinical diabetes care. He is jointly qualified in Hospital Medicine and General Practice and this has allowed him to work relatively seamlessly across the primary care/secondary care interface and improve effectiveness in delivery of diabetes care for the local Community. His work is driven by the deep held belief that a patient-centred, outcome-based, team-working approach can lead to a reduction in all premature complications of diabetes and indeed complications of all long-term conditions by at least 50%, thereby significantly improving the quality of life of people in UK. Since 1995 he has been running endocrine clinics at the George Elliot Hospital, and for the last 5 years has also managed a specialist chronic fatigue unit that sees many patients with ME/CFS. Many patients from Warwickshire and Leicestershire with ME/CFS are now refered to his clinic.

 

How did you first become involved in treating patients presenting with ME/CFS?

I first became involved in treating patients with ME/CFS when I was actually working in London, at the Hammersmith Hospital and St Bartholomew?s Hospital. We found that there were at least one or two patients in each endocrine clinic that had chronic fatigue. It was always very difficult to treat this specific sub-set of patients for several reasons, including the complexity of the diagnosis and the very important need to exclude other conditions that mimic ME/CFS. This was just over 20 years ago!

 

Was there a specific reason for your initial interest?

The main reason why I am interested in ME/CFS is that this group of patients are simply not given enough time in general clinics that see patients with, for example, rheumatological conditions or endocrine conditions. I felt that a special clinic should be set up which attempts to deliver a patient-centred, multi-disciplinary approach, so that we can alleviate suffering due to ME/ CFS in a practical and evidence-based way. I also became interested as many of our patients improved substantially on review, particularly when given advice and with the use of some of the drugs that we use for specific symptoms such as poor sleep and pain.


When did you first start seeing ME/CFS patients at the George Eliot?

I first started seeing patients at George Eliot Hospital NHS Trust with ME/ CFS in October 1995, when I started my endocrine clinics. There were always several patients in each endocrine or general medicine clinic that clearly required specific intervention and hence the creation of the specialised clinic many years later!


When did you start your specialist clinic for CFS sufferers and who provided the funding?

We first started seeing patients at George Eliot Hospital NHS Trust around about 5 years ago, following on from a De-partment of Health Initiative which was launched by Sir Liam Donaldson, Chief Medical Officer. Funding was given to set up a clinic for 100 patients.


What are the staffing levels and what disciplines are covered within the CFS team?

The staffing levels at present include around 12 hours of an Occupational Therapist and a Physiotherapist per week and approximately 4-6 hours of a Clinical Psychologist. With respect to Doctors, we have 12 hours of Consultant support per month. Support from junior doctors is also around 12 hours.


Approximately how many ME/CFS patients are now registered with this clinic, how many do you see in a normal week and how many new referrals are registered each month?

We now have 593 patients registered with the clinic. We hold two clinics a month and we are now seeing approximately 12 -16 new cases each month.


What was your initial perception of the illness and has it changed in any way after treating so many patients?

My initial perception of the illness was that it was due to a combination of neurological, endocrinological and psychological factors. My perception has changed in that each of these 3 main factors is not equally present in all patients. For example, some patients may have a larger endocrine component whilst others may have a larger psychological component. The readers will of course appreciate that no matter what medical condition we have, even if it is a broken leg, there will always be a psychological component to the illness, albeit smaller in some patients and larger in others.


Do you feel that the illness ME/CFS is a "large umbrella" under which a number of sub groups have been placed?

I do feel that ME/CFS is a large umbrella under which a number of sub-groups of conditions have been placed and in my answer to the above question, this clearly eludes to the idea that a lot of endocrine diseases, neurological diseases, rheumatological diseases and even psychological diseases, do fall within the large umbrella. Nevertheless, there is a distinct definition which I think is helpful in diagnosing ME/ CFS and I am very grateful to ME Positive for advising me to use the Canadian Criteria which do work better, particularly when considered in conjunction with the severity index provided by NICE.


The WHO categorise ME/CFS as a neurological illness. Do you accept this definition?

The WHO does categorise ME/CFS as a neurological disease. I do accept this definition but really I feel that the nomenclature is inaccurate in that there is no evidence of encephalomyelitis in the vast majority of patients with ME/CFS. Encephalomyelitis implies that there is inflammation of the brain and this is not true. I think there are abnormal bio-rhythms and abnormal day/night patterns of sleep and energy for example, but not distinct inflammation which the "itis" part of encephalomyelitis implies. However, the nerves are different from the physiological state and therefore this should be referred to as a neurological condition with endocrine and psychological components.


Many people with ME/CFS suffer from chronic pain. Is there an overlap with Fibromyalgia and its symptoms or is that a separate stand alone illness?

Many patients with ME/CFS do suffer from chronic pain and I think there is an overlap with fibromyalgia. In fact, the pain in CFS often responds very well to treatments that we use for chronic pain generally and specifically fibromyalgia, including Amitriptyline, Nortriptyline and Gabapentin.


With your experience of treating so many ME/CFS patients and the evidence that you have gleaned from doing so, what do you understand to be the most common causative effects?

I think the most common causative factor in ME/CFS is abnormal bio-rhythms. Reasons for the abnormal bio-rhythms are multi-ple and include the following;


I think the latter point is probably the most important as all human beings would eventually have some sort of symptoms if they overworked themselves, physically, socially or even psychologically. I really do think that human beings were only supposed to work 3-4 hours per day! In modern society we have "a lot of things on our plate" as it were and this often leads to de-compensation, particularly if patients have other factors such as viral illnesses or other co-morbidities.


In your experience which, if any, treatments have proved to be beneficial in treating ME/CFS?

The main treatments that I find useful are as follows, however, it must be pointed out that none or all of these treatments may work in any specific patient and indeed, a lot of the treatments listed below do not work at all in some specific patients. I can definitely conclude that at least 50% of my patients have benefited from the treatments below, either in isolation or with one or more of the other treatments in the list.


Treatments are often based around diagnosing specific conditions that can mimic ME/CFS. These include the following:


It is also important to stop certain drugs that cause tiredness, for example, statins, codeine, Tramadol, other pain killers, cannabis. At this point I would also like to state it is very difficult to give general advice on pacing and I prefer that the majority of our patients are seen by our Occupational Therapist or Physiotherapist for specific personalised advice on pacing after a detailed history on activities of daily living and physical activity patterns is established.


To the best of your knowledge, how many of your patients have recovered from the illness?

To the best of my knowledge, many patients have recovered from ME/CFS! I have had a reasonably large series of letters and cards from my patients who have made a full recovery and many have returned to their previous career. Some have even gone onto Bachelors or Masters Degrees and in a single case, a PhD. There is absolutely no doubt that a lot of patients will recover almost completely, but clearly it is impossible to predict at the onset of the disease who will recover and who will not.

Have there been any recent developments, or possible scientific breakthroughs, that have caught your attention?

In terms of recent developments, I think the most important development is the fact that ME/CFS is taken seriously.

There have also been some exciting ideas such as the use of Veg EPA (Professor Puri, Hammersmith Hospital) and the fact that various retro-viruses may be associated. What we now need are large randomised controlled trials to see whether these agents can be specifically used in treatment either as Veg EPA itself in the case of the supplement or specific anti-viral agents against retro-viruses (XMRV).

Can you give any encouragement to those people reading this interview who suffer from, or care for someone with, ME/CFS?

The only encouragement I can give to people reading this interview is that ME/CFS is a dreadful, awful condition that can be managed to improve life in most cases. We only have a life of 701,280 hours (80 years!). We really need to make the most of it so that we can benefit from it as individuals, as can our carers, family and hopefully our community as well. It is therefore important to seek help and try to work out which personal plan helps you to get on with your life the way that you want to lead it. There are many stories of very positive lives resulting from this attitude and even spontaneous cures despite clinical intervention!


With specific regard to the clinical and public perception of ME/CFS, how would you sum up where you think we are now and what direction the future clinical pathway should take?

I think at the moment the clinical and public perception of ME/CFS is still quite low. We need to somehow get the Canadian Criteria out there so that we can specifically work out how many of our patients are mildly, moderately/severely and severely affected. We also need to think about care plans for our patients which are individualised to the persons specific symptoms and we will start working on this later on in the New Year. We are still a long way from having adequate funding for the clinics and I think this is going to be a very difficult battle to fight, especially as resources have become severely limited over the last few years.


Do you support the efforts of the Countess of Marr, Dr Charles Shepherd of the MEA and other ME charities in their endeavours to challenge the NICE guidelines on ME/CFS?

With respect to challenging NICE Guidelines, I feel that rather than challenging them, we ought to work towards adding to them, i.e. by specifically adding in more detailed criteria such as the Canadian Criteria and giving further information on treatments that work such as the ones outlined above. I would also like the NICE Guidelines to add a care plan which is individualised to patients and their specific symptoms. Challenges directly to NICE will not be helpful because I feel that although the guidelines are imperfect (as are all of the guidelines), it is a good first attempt. I am sure that version 2 will be better with the full co-operation of the Countess of Marr, Dr Charles Shepherd and other ME charities rather than through a challenge process.


Do you subscribe to the Canadian Protocols for ME/CFS?

We do subscribe to the Canadian Criteria for ME/CFS. We have developed a slight modification of the guidelines (to make them shorter) that we have now started to use with our new patients. I have found these helpful and once again I am grateful to the ME Positive support group for putting me in this direction.


In conclusion and for the benefit of our readers, could you give a brief overview of ME/ CFS in respect of where we were, where we are now and where we are going?

I think in conclusion, we have to work together! I think it would be quite useful to have a small support group cohort that visits the Clinicians, every 3 or 4 months so that we can work out the challenges together. We have to carefully think about how, with the above staffing, we can do the best for our very large number of patients such that the right patient benefits and there is not an unrealistic expectation of what we can deliver. I personally find this group of patients very satisfying to work with because the condition is at the cutting edge of what we as clinicians can do to help our patients although we simply do not have all the answers as yet. Over the next few months we very much hope to get the Canadian Criteria embedded into our service and to create a patient information leaflet and care plan.

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