Catriona Courtier, from the Network MESH group in West London, gave a speech about treatment from the patient’s perspective when she addressed the Royal Society of Medicine conference on ME and CFS on Saturday, 11 July 2009. The text of her speech follows:
I am here today to talk about the patient’s perspective on treatment. I have ME. I have been ill for about twenty years. I also care for my daughter who is severely affected. She got ill in her teens, deteriorated at twenty one, is now in her thirties and has spent all that time housebound and largely bedridden. At her worst she was too weak for several years even to have her hair washed.
I am a trustee of Network Mesh, a support group for people with ME in West London. I keep in touch by phone with many severely affected people and their carers who are members of our group and of the 25% group. I do want today to give a voice to the severely affected as they can’t come to conferences and are not seen by doctors. Their experience is not always understood even by people with ME who are less ill. As Michelle Obama said, "We are only as strong as the weakest among us."
My first thought about treatment was – what treatment? Because most people with ME experience a lack of treatment. They are diagnosed. They feel relief. But rather than diagnosis being the start of a journey, it is the end of the journey. Many people turn to alternative therapies, often spending a lot of money. In part, that is a reflection of the vacuum that exists within the NHS.
Some people come to realise how little treatment they are offered for their ME when they develop another illness. One of our members developed diabetes and described her experience at the diabetic clinic at her local hospital. She said, "I am regularly monitored. I am listened to and what I say is taken seriously. The clinic is well staffed with senior doctors. Diabetic sisters make visits to severely affected patients in their homes. There is a weekly drop-in clinic for any niggling worries." This would be beyond the wildest dreams of most patients with ME.
AfME carried out a survey of over 3000 patients last year. The reason most people gave for not seeing a specialist was that there were none in their local area. They said how difficult it was for sick people to travel long distances. Housebound patients have no chance of a home visit from a specialist. Having a regular home visit from a nurse would be very much appreciated but is not available.
Many people with ME would love to have a drop-in clinic to check out new or worrying symptoms. The All Party Parliamentary Group on ME are currently carrying out a review of ME specialist clinics. Network Mesh has submitted a memorandum to the APPG on a clinic we have been involved with in a hospital in west London. As part of this process I have been interviewing patients of the clinic. One patient I spoke to was deteriorating. He wanted medical assessment and reassurance. His GP didn’t believe in ME so he asked for a referral to the clinic but when he arrived there he found it was run by a psychologist and there was no medical treatment or
assessment even in a specialist centre.
Over the 20 years I have had this illness, what has really bedevilled the situation of patients with ME has been the belief, which has been persistently promulgated that we are suffering , not from a physical illness but from an illness belief. This is at the root of all the problems we experience: the lack of resources, the hostility and disbelief from some doctors, the ignorance and disinterest in our symptoms, the ineffective treatments, the harmful treatments and in the very worst cases, the imposition of psychiatric treatment against the patient’s wishes.
In 2002 the working group of the Chief Medical Officer said, "ME is a chronic illness meriting significant NHS resources." However, in the same year, an editorial in the Journal of the Royal College of General Practitioners questioned the validity of the CMO’s report. It described patients with ME as suffering from PUPS, persistent unexplained physical symptoms and said, "illness belief and behaviour do not amount to proof of physical causes and there are gains involved in adopting victim status". This was in spite of numerous research findings showing physical abnormalities in subjects with ME. At that time, studies had shown reduced blood flow to the brain,
decreased uptake of acetyl carnotine in the brain, increase in choline in the brain, abnormalities in muscle mitochondria and so on and so on. Since then we have had research showing increased levels of cell death and research in London and Glasgow by Dr Kerr and Dr Gow using gene expression which has shown upregulated genes in patients with ME.
In spite of this I have been told by a consultant physician who sees many patients with ME that ME is by definition an illness where there is nothing physically wrong with the patient. One of our members was treated in a leading specialist clinic in a London hospital. Her GP was informed that she was making good progress. He was told that the only problem that remained was her "illness belief."
It is not surprising that GPs are sceptical about the illness when they read or receive this kind of information. I do not want to paint too negative a picture. AfME’s survey showed that 40% of patients found their GPs helpful. But thirty per cent found them poor or very poor. 30% found their specialists poor. The MEAssociation also carried out an even larger survey of over 4000 patients in 2008. Over 50% of patients found their GPs were ignorant about the illness and potential treatments.
It is understandable that some patients give up seeking medical support. AfME’s survey showed that 30% of respondents had not seen a doctor for over a year for their ME. What is it like to have to be your own doctor? It is a very painful thing. I want to talk here about a young woman who is very severely affected. She is light sensitive and has to have insulating material taped around her eyes. In her latest downturn, she has been in this state for five months. This is a family whose doctor does not believe in ME, who were refused home visits, who have been left to manage this severe illness on their own for many years. Her mother spoke about what this is like very movingly. She said, "I feel really frightened. Lack of medical support means there is no-one to phone, no-one to ask for advice, no-one to take the burden off." Patients have been denied the therapeutic relationship with a doctor which has been sought in all societies and at all times even where there were no effective treatments. I do not believe that most doctors want to abuse or neglect patients. Those who promulgate the view that ME is an illness belief have undermined the mutual trust and respect that should exist between doctor and patient. They have done a great disservice to both patients and to the medical profession.
I turn now to the treatments that are recommended for ME by the NICE guidelines, Cognitive Behaviour Therapy and Graded Exercise Therapy. If we are suffering from a mistaken belief then it is reasonable that treatment should address that belief and this is what CBT is designed to do, to change negative beliefs. What is a negative belief? This is a matter of opinion. In its application CBT is not value free. It depends what the therapist considers negative. In the application of CBT to ME, it is often patients’ experience that exercise makes their symptoms worse that is considered a negative belief that should be challenged. In this theory of the illness, we may have had some initial trigger, perhaps a viral illness, but this has cleared up. We have developed a phobia about exercise. We do not exercise. We are unfit and this is the cause of our symptoms.
I do not want to go into all the research findings in peer-reviewed journals which have demonstrated that the normal positive physical effects of exercise are reversed in subjects with ME. It has been shown that people with ME on average have a high heart rate when resting but at maximum workload have a significantly reduced heart rate and cannot reach the heart rate that would be normal for their age compared to sedentary controls. Their body temperature decreases rather than increases after exercise. Their cognitive processing becomes impaired rather than improved.
Dr Chaudhuri, who is a speaker here today, showed that people with ME were more sensitive to pain after exercise while controls were less sensitive. The latest research I have seen was in 2008 by Neary et al in the Journal of Clinical Physiology. This reproduced earlier research using SPECT scans which showed that blood and oxygen supplies to the brain of subjects with ME decrease rather than increase after exercise. In spite of this the patients in west London in the specialist clinic this year have been given material which says that their symptoms are due to lack of fitness and can be reversed by exercise. The only negative effect they are told about is muscle stiffness which is described as a normal strengthening of the body. No explanation is given of the malaise, digestive upset, headaches, nausea, sleeplessness and myriad other symptoms that people with ME experience after exercise. Patients are told there is nothing to stop their bodies gaining strength and fitness. (Just the illness, perhaps?).
I do not think the staff in the clinic are unsympathetic to patients. They want to help. However they seem to know little about the illness. One patient told me he had been asked why he always had a sore throat and was unable to talk to them. The staff members had no experience of ME before being employed in the centre. Obviously the training provided centrally to staff in these clinics is inadequate or biased. The ME Association survey asked people with ME about 25 different therapies. GET came bottom as least helpful and most harmful. Another survey by the 25% group showed that 82% of severely affected patients had been made worse by GET. Some had not been severely affected before they tried it.
I now want to talk about pacing. Pacing was the approach to managing the illness that patients found most helpful in the ME Association survey. As understood by patients, pacing means doing what you can, doing a little more when you are feeling better, doing less when you are feeling worse. Activity can be broken down into manageable chunks, interspersed with rests and so on. It enables patients to enhance the quality of their life, even though they still remain ill. But pacing is not a therapy or a treatment. People can pace themselves diligently and still deteriorate. This was put very clearly in a letter in the last edition of ME Essential by a mother whose daughter has not left the house more than four times in the last six months. She wrote, "if pacing works, then why has she relapsed and is so ill when I worked so hard to manage her rest periods and pace her activity? It is not a cure or a treatment in my opinion". I agree with her.
I would also like to say that the word "pacing" is being redefined in ME clinics. When I was told that the clinic in west London intended to provide both pacing and GET, I didn’t understand how this was possible as they appear to be contradictory and mutually incompatible approaches to activity. However I came to realise that patients are being told to "pace" themselves by gradually increasing activity on an incremental and consistently ascending scale. They are asked what they want to achieve, as if anything is possible. If I was asked, I would say, "I want to achieve a Nobel Prize". A patient in west London told me, "I felt I was being shown a ladder with endlessly ascending small steps and being told I could climb it. I felt like screaming. I said that ME was not like that but I was not listened to."
I now turn to what treatment patients want. I think we have to accept there is not currently a cure for the condition. In the MEA survey of 25 treatments, patients were asked to tick column one if the treatment had coincided with considerable improvement. This column had the lowest figures, often just 1 or 2 percentage points. However we cannot wait for a cure before we receive treatment.
The Richmond group is another patients’ group in west London who have responded to the APPG inquiry. They have proposed that patients with ME should be medically reviewed once a year. This seems a modest proposal. This would be a review the patient would be offered rather than having to ask for. It would be with a doctor who is knowledgeable about the physical symptoms of ME, who can discuss the patient’s current symptoms, carry out investigations where necessary and offer symptomatic treatment.
Treatment can be offered for many of the symptoms of ME including pain, allergies, sleeplessness, anxiety, depression, nausea, dizziness and so on. ME patients are three times more likely to experience allergies than the general population.
I remember a meeting with a young member of AyME and her paediatrician. She had suffered from very severe nausea which hadn’t responded to a number of drugs. He was able to find a drug which helped but was only available for prescription in this country by a consultant. That made a huge difference to her life. But we do also want treatments which will directly address the illness.
The recent Invest in ME conference which attracted medical experts from across the world showed the interest in ant-biotic, anti-viral and immune modulatory treatments as potentially effective therapies for our illness. I believe Dr Kerr has said there are existing drugs which could turn off some of the upregulated genes he has identified. Of course trials are needed but when are these trials to be carried out?. We are constantly told about the need for evidence-based treatment but without research how can that evidence be provided?
I began by describing the severely affected as the weakest among us. In some ways they are the strongest. If people climb mountains or sail round the world single handed they are praised for it, but to live for many years with an illness like ME is also a huge feat of human endurance and courage but is seldom recognised as such. People with ME at all levels deserve to be respected. They deserve to be listened to and I would like to thank you and to thank the RSM for giving me the chance to talk and be listened to today.