Last update 9th. December 2004
The scandalous 'dustbin' diagnosis of Fibromyalgia is controversial, and a testament to the NHS's and The Royal College of Physicians extreme failure to care for women's physical health. The Department of Health accepts the Fibromyalgia [FMS] can cause considerable pain and disability. To be given a diagnosis of Fibromyalgia a person has to have 11-18 tender points on their body. The All Party Parliamentary lobby group for FMS want this number of tender points reduced to 4. In the mid 1990's there were differing schools of medical opinion about Fibromyalgia [or chronic fatigue syndrome].
One body of medical opinion considered it to be a psychological disorder, while another body believed it to be post viral in origin.
There is a failure within the NHS and clinical medicine to acknowledge that FMS and CFS often has a muscular and a skeletal cause. The myriad of symptomatic problems that are attached to the labels of FMS and CFS are attributable to muscular strain and a malalignment of the spine which affects the internal structure of the body and causes an imbalance within it. `
In this present climate of get fit and keep healthy, government money is being made available for rehabilitation. Will any of this money filter through to people who live in unnecessary muscular/skeletal pain and the associated symptoms of chronic fatigue, that is inevitable when the mind and the body is tortured by repetitive strain injury and malalignment of the spine? A personal trainer is not enough, these people need adequate and appropriate treatment. Clinical excellence is in the NHS mainstream, so why are we not given a choice?
The history of my progressive and preventable FMS/CFS lasted for 11 years. My two sons are now aged 10 years old and 6 years old. I have recovered 100% with simple, fast, effective, curative and relatively inexpensive 'hands on' manipulative physiotherapy given to me by an Expert in Physical Medicine, within a private Sports Medicine and Sports Injury Clinic. Sports Medicine is a ' mainstream' Rhuematalogical speciality. The British Association of Sports and Exercise Medicine, physical medicine has been within the NHS since 1953. I was given a clinical working hypothesis, a treatment plan and an excellent prognosis. I had Repetitive Strain Injury. I had Athletes Overtraining syndrome now called Under Recovery Syndrome. Eleven years ago, I strained a small muscle along my lower spine. I have excessive mobility in my lower back although I am not Hypermobile. At the same time as this injury, my body suffered the emotional trauma of my parents deaths and the physical trauma of giving birth and caring for my wakeful and active son. Overtime this small muscle strain eventually pulled my skeleton out of line. I was given incompetent physiotherapy and refused any further physical therapy for ten years, even after the birth of both of my children and after the diagnosis of FMS.
Sports Medicine as treatment for muscular and skeletal problems is in the NHS 'mainstream', but mainly available at the forefront of private practice throughout the country. Sports Medicine, Physical Medicine and Sports Injury Clinics are led by Doctors and Physiotherapists who treat and manage our countries elite sportsmen and women, surely this is Clinical Excellence. Their clinical knowledge and visual perception of the body is trained to care for our athletic Ferrari's. They are experienced body mechanics and therefore fine tuning an ordinary body is not a challenge, even if it is ready for the scrapheap. The individual being treated has a far greater challenge of retraining their muscular/skeletal body, through the brain damaging effects of chronic fatigue, the publics perception of the diagnosis and the pain. Kelly Holmes had CFS.
Making sense of my past history on a personal level and also within a broader social context has taken longer than my physical recovery. This broader social context is complex and complicated, far more tangled and Kafkaesque than the causation of my physical health problems. I knew the origin of my pain, the Consultant Physiotherapist who treated me found the origin of my muscular/skeletal pain and CFS simple to treat. Many other private and public health professionals did not. Why not?
Although The British Association of Sports and Exercise Medicine has been in mainstream medicine for fifty years, at present Sport and Exercise Medicine [SEM] is not recognised as a 'medical' speciality in the UK. Although an application for speciality recognition for Sport and Exercise Medicine has recently been received by the Department of Health and is currently undergoing a consultation process. [ See The British Association of Sport and Exercise Medicine's response to D of H consultation paper on Physical Activity. ] So why was I left to suffer the torture, indignity and isolation of undiagnosed and then untreated FMS/CFS within the NHS? Why are 1,000,000 people suffering to the potential level of disability or are disabled by extreme physical pain and extreme fatigue? Why do the department of works and pensions spend 8 billion a year on care and benefits? Why are the vast majority women? This is the 21st Century. Moira Henderson from the Department of Works and Pensions assured me at a recent Fibromyalgia Associations conference that the Government do want to make people better. Prevention is surely better than cure, for the individual and the public purse.
The Department of Health is aware of the adequate and appropriate treatment for people with FMS.
The Governments Policy issued by the Department of Health says 'The National Health Service [NHS] provides a wide range of services to which people with Fibromyalgia have access, and such patients are seen within a wide range of hospital specialities. Under the present system it is for health authorities and Primary Care Groups to plan and arrange the services available to people in their care, as they are closest to the people they serve and so best placed to respond sensitively to their needs.'
The Department of Health goes on to say that 'studies suggest that aerobic exercise such as swimming and walking can improve muscle fitness and reduce pain and tenderness. Heat and massage may give short term relief. Antidepressant medications may help to elevate mood, improve quality of sleep, and relax muscles. People with fibromyalgia [FMS] may benefit from a combination of exercises, medication, physical therapy and relaxation.
The Chief Medical Officers report on CFS/ME recommends Sports Physiotherapy as 'best practice' treatment. Although Sports Medicine and Sports Injury clinics are 'mainstream', physical medicine is not given within the NHS to the general public. Treatment is available privately for people who have the diagnosis of CFS. I am trying to find out what the differences and similarities are between Athletes Overtraining Syndrome and CFS?
Although there is no epidemiological study of the incidence of Fibromyalgia, the statistics confirm that people are not receiving any treatment that is adequate and effective. The diagnosis of FMS is the third most common given by Rheumatologists. People are seen by their GP. They are not listened to. They are offered medication, a cocktail of antidepressants, sleeping pills, and painkillers, that don't work. Tramodol, which is morphine is the exception, but is not often prescribed. In my local area, NW Central London, the Primary Health Care Trust does not prescribe exercise to people with FMS and CFS. There isn't money in the budget for these physical problems. Some people are given physiotherapy, but it is not successful. Treatment is not successful because the education and training of Physiotherapists is restricted by policy within secondary care.
However, treatment that significantly improves the quality of peoples lives can be funded by the local Department of Health, if this treatment is not available within the NHS. GP's are fully aware that they can refer patients to private clinics if appropriate, adequate and effective treatment is available. So we do have a choice, except we don't have a choice because we, as patients, are not aware that we do. [Contact local D of H Commissioning Manager to find out how to get funding for treatment.] Perhaps we don't have the choice because Sports Medicine is Mainstream and only given to the selected few.
Is this neglect, discrimination, prejudice, incompetence and ignorance? Yes. Who is to blame? Is it the Department of Health? Is it The Royal College of Physicians? Yes to all. Is anyone else responsible? No-one is personally responsible or can be held accountable because the policies in place protect them. Clinical medical scientific research proclaims it's ignorance and the Department of Health supports doctors in their 'challenge' to make a definite diagnosis.
Where is the origin of this muddle?
One of the major stumbling blocks exists in The Royal College of Physicians Service Considerations Policy for Rheumatology. There is discrimination and therefore prejudice at policy level . The Joint Speciality Committee report chaired by Professor Scott, says that the majority of Rheumatologists case load is soft tissue injury, sports injury, chronic musculo\skeletal pain, post-viral fatigue and these are 'often treated on a one stop basis'.
This policy is responsible for manufacturing the inconsistency in medical advice and treatment, putting GP's and other health professionals in the position of playing god or the devil with individuals lives. What do doctors do with patients who complain of chronic pain and fatigue? They are the gatekeepers but where do they refer people to that are suffering from these complaints? If patients do not have health insurance, it is cheaper to fob them off and feign ignorance, their professional policies and clinical understanding supports them. There is treatment available, however in my local area NW Central London, where general health is poor and the suicide rate is the highest in the country, treatment isn't regulated and therefore is given only to the selected few. This raises a question of professional ethics and integrity.
Another factor that plays an important role in the creation of FMS/CFS/RSI and that is the status of Physical Medicine within the Clinical Medical establishment. Within the hierarchy of the Clinical Medical establishment Physiotherapy is not regarded as a science. Physiotherapists are regarded as technicians or support staff. They are told what to do by other specialities e.g. Rheumatology, Orthopaedics, Pain Clinics and even GP's. [ An unnecessary expense]. They do not have autonomy within Clinical Medical practice. The Governments white paper on health and fitness hopefully will signal the beginning of a significant change in the way the NHS treats the bio mechanical body.
Psychiatry, on the other hand, is a science and has a higher value than physiotherapy. This high regard for the mind and little regard for the body, is our societies 'clinical schizophrenia' or 'academic autism'. We have a disembodied National Health Service.
The clinical medical scientific community is reducing the human body to a single cell, the aim is to find a neuropathic pain killer. This work is sponsored by drugs companies. There is a place for neuropathies pain killers, for antidepressants and sleeping pills however this cocktail is not offered with any ' choice'. Physical Medicine within the NHS is only given to those people who are 'important' in our communities, footballers, golfers and athletes, to those with private health insurance, to those that know what to ask for and to those that are given a referral by their GP. Treatment is being withheld from the majority, going against the Department of Health's policy on FMS.
I happily paid to be given my life back, it was hard work but the rewards are fantastic. I look forward to having a fit and healthy life with my family. This treatment is perhaps not for everyone. My spine was manipulated into the correct position, at the same time, I was prescribed Pilates exercises that I had to do everyday, this was difficult to begin with but got easier as my muscles began to strengthen around my spine. As my level of pain decreased, so did the level of fatigue, my sleep became restorative. My body began to heal itself. To complement and help my rehabilitation I joined my local Marriot Hotel Leisure club. These facilities are excellent for RSI, FMS and CFS. The small swimming pool is very warm and sunny. The sauna and steam rooms are large enough to exercise in and are next to the pool. The power showers are powerful. There are beds to lie down on, to relax on, in the heat of the sun. There is a gym and personal trainers. Pilates classes are given by an osteopath who also offers treatment and postural advice. Sadly, these excellent facilities are not available to people who would benefit greatly from them, unless they can pay. They are open fifteen hours a day, seven days a week. The cost of a corporate membership for six weeks, for one person is approximately the equivalent of 30 minutes of GP surgery time.
Treatment for FMS and CFS is available in one Central London NHS Hospital that serves NW Central London. There aren't any private Sports Medicine/Sports Injury clinics in NW Central London except for the British Olympic Medical Associations. There are several NHS hospitals and many private Sports Medicine and Sports Injury Clinics that serve SE Central London.
A significant percentage of women go on to develop Fibromyalgia from giving birth. My own experience is confusing because I could not understand how my NHS providers could leave a full time mother in extreme pain and extreme fatigue without giving any help, advice or treatment. Indeed a Senior Clinical Physiotherapist within the Royal Free Hospital was not able to see an unstable sacroiliac joint and lower lumber spine. Her diagnosis was 'stress'. Had a Consultant in pain management not forgotten to see me again, he would have referred me for psychiatric help!
Sir Donald Achesons report on the Inequalities in Health, 1998 highlighted, women with children as the top of list of priorities to be tackled within the Health Service. I enclose a letter I wrote to David Hobbs, Director of Corporate Development, The North Central London Strategic Health Care Authority. I sent this letter to Mr Paul Fox, [The chairman of the Inequalities Group, Interim General Manager and Head of Health Partnership at Camden], and to Sarah Price, [The Director of Public Health for Islington Primary Care Trust. She is responsible directly for tackling inequalities in health] I have not received a reply from Mr David Hobbs or Mr Paul Fox. Sarah Price replied and her letter confirms that there is no social policy to protect the physical welfare of women after giving birth in Islington. Treatment for women after giving birth is not regulated. Her letter says, 'Both the health visiting service and GP's are in a position to pick up postnatal problems and signpost people to the most appropriate service. It is very important that both the GP and health visitor get to know the families and think about their needs as a whole.' 'Signpost, appropriate and think' are not the same as prescribe, adequate and diagnose. Ideally everyone should be given a clinical working hypothesis, treatment plan and prognosis.
Treatment for women who suffer physical problems after giving birth should be regulated and not just given to those who are deemed worthy of treatment by their local community and its budget. Regulation would put an end to this origin of disability. Clinical exellence is mainstream and should not be withheld from them.
Had I managed to find or have had the luck to be treated 11 years ago by a competent physiotherapist, I would not had suffered RSI throughout my body, pulling my skeleton out of alignment, the consequence of this chronic pain led to me developing CFS. The NHS gave me a diagnosis of Fibromyalgia/CFS but no treatment. Had I not managed to find and be able to pay for Private Sports Medicine, my life and my children's lives would still be conditioned and compromised by chronic pain and chronic fatigue.
Jane Barratt Tel No 0207 482 6090