British people suffering from Myalgic Encephalitis otherwise known as ME or Chronic Fatigue syndrome (CFS) have suffered from over 30 years of medial neglect and health inequalities which need to be addressed as a matter of urgency.
In the UK over 260,000 people are suffering with no effective treatments and minimal resources being put into research. The pressures on the National Health Service (NHS) are significant with an estimated 19,985 newly diagnosed cases in the UK each year. (2007 report by the National Institute for Health and Clinical Excellence-NICE).
In 2012 46% of GP's report that ME/CFS is the illness group for which they have the most difficulty in making referrals and that 22% of GPs reported an increase in patients reporting ME/CFS in 2011. (The Aviva Health of the Nation Index. 2012)
The NHS relies upon psychological treatments for ME/CFS such as graded exercise therapy and CBT whose effectiveness has been seriously undermined. Dr. David Tuller from Berkely University has shown how the Medical Research Council funded PACE trial in 2011, that claimed that CBT and grade exercise therapy were effective treatments for ME/CFS, only helped 1 in 10 of the trial participants not the 60% originally claimed by the trial authors.
The NHS uses a bio psycho-social approach to ME/CFS which treats the illness as a somatic/psychological illness. This is scientifically inaccurate.
Professor Anthony Komaroff, one of the world's foremost experts on ME/CFS from Harvard Medical School, has noted that the American National Academy of Sciences/Institute of Health reviewed 9,000 peer reviewed studies into the illness in 2015. This landmark report stated that ME/CFS is a neurological illness that is biological in nature. It noted the neglect of the ME/CFS community by the medical profession and recognised the urgent need for a big increase in funding into research/treatments for the disease under the leadership of the Centre for Diseases Control and Prevention.
In 2015 NHS England issued a document ''Guidance for NHS commissioners on equality and health inequalities legal duties''. This stated that:
''NHS England NHS England has a duty to have regard to the need to reduce inequalities between patients in access to services commissioned through its direct commissioning functions. This may involve:
Identifying health inequalities, evaluating how such inequalities might impact on people’s ability to access services, and commissioning for all of the population and all needs''.
This means CCGs and NHS England should understand the potential effect of policies and practices on people with characteristics that have been given protection under the Equality Act, especially in relation to their health outcomes and the experiences of patients, communities and the workforce. This will help the organisation to consider whether the policy or practice will be effective for all people.''
Despite all the talk of tackling health inequalities ME patients continue to suffer from poor quality healthcare, health professionals who are very poorly educated about their illness, stigma from the media/health professionals and non-existent community services while the medical establishment has ignored their voices for over 30 years.
Why does ME/CFS continue as a public health crisis?
Minimal resources have been put into research/treatments for this neuro-immune illness. In 2016 the medical charity Action for ME produced a study that noted that ME/CFS has consistently faced significant under-investment over the last 30 years compared to other neurological illnesses. In 2015 ME/CFS research represented 0.02% of all active research awards granted by the Medical Research Council/Wellcome Trust. Professor Stephen Holgate of Southampton University has noted:
“The resulting report presents hard evidence of the chronic lack of research funding for ME/CFS from major funding agencies. I hope that it will prove to be a foundation for larger mainstream funders to reassess their attitudes towards ME/CFS and review their funding policies towards the illness.”
There has been no consistent effort to combat the stigma that ME/CFS patients face in the medical/clinical/media/public fields. It is a common complaint of ME/CFS patients that GP's and hospital staff have a poor understanding of the illness.
A Harley Street consultant Dr.Willaim Weir has suggested that GP's fall into 3 categories when dealing with ME/CFS patients: a) supportive but admit they can do little B) insist that patients must get more exercise and engage with talking therapies C) do not believe ME/CFS is a real illness.
In a 2011 study Dr. Esther Crawley of Bristol University noted that only 52% of GP's felt confident of making a diagnosis of ME/CFS.
There is very limited communication with patients known in the NHS as 'stakeholders'. ME/CFS patients are not included in planning decisions about their illness.
To many patients with our illness there appears to be no national leadership/no central coordination plan from the NHS for dealing with ME/CFS. There is limited cross-agency collaboration.
There are no clinical drug trials and very limited specialist care in the UK.
The cost to the UK economy of so many people with ME/CFS being unable to work due to their highly debilitating illness has been estimated at £6.4 billion in a 2006 study by the Survey and Statistical Research Centre at Sheffield Hallam University.
In a 2011 study for Bristol University Dr. Esther Crawley estimated that for the 4,0000 patients attending specialist ME clinics the cost to the UK economy is over £101 million a year in lost earnings. A 2014 Action for ME survey identified that: less than one in 10 people with M.E./CFS were in full time paid work, education or training and only 14% in part-time paid work, education or training. These figures have no doubt increased in subsequent years as the number of people with the illness has increased. The findings of Dr. Crawley's study are important as they show the long term cost to society of leaving such a large community of people without any hope of recovery from their illness. Dr. Crawley notes the heavy impact upon families and young people:
(Collin SM, Crawley E, May MT, et al. The impact of CFS/ME on employment and productivity in the UK: a cross-sectional study based on the CFS/ME national outcomes database. BMC Health Serv Res 2011; 11: 217.)
ME/CFS is at least as disabling as MS, rheumatoid arthritis and congestive heart failure. Yet there is no recognition of this by health/benefit agencies. (Komoraff et al, Am J Med 1996; 101:281-290)
A 2016 Action for ME report noted that, ''people with ME/CFS experience high levels of functional impairment across physical and mental domains, scoring lower overall on health-related quality of life tests than most other chronic health conditions including lung disease, depression, heart disease and diabetes''. Again there is no recognition of this by health/benefit agencies. (Hvidberg et al, 2015 Plos One 10:7 and Nacul et al, 2011 BMC Public Health 11:402).
In 2015 NHS England issued a document ''Guidance for NHS commissioners on equality and health inequalities legal duties''. (Version number: 2.0 First published: December 2014 Updated: December 2015) This stated that:
''CCGs have a duty to have regard to the need to reduce inequalities between patients in access to services that they commission. This involves:
Knowing the local population and local needs, commissioning through the use of joint strategic needs assessments (JSNAs) and additional supporting data and evidence, such as local health profiles and qualitative sources.
Identifying the local health inequalities and commissioning for all of the population in the area, not just relying on General Practice registrations''.
For many people with ME/CFS such declarations are meaningless and have no impact upon their lives. This is because of the institutional discrimination that has its foundation in inaccurate science due to the grip of the psychiatric lobby upon the medical establishment. The problems that many ME/CFS patients face when trying to navigate the disability benefits system in this country is a good example of this institutional discrimination. Many people with ME have had to face assessments carried out by Atos health professionals and been told that due to their fluctuating illness they are not eligible for disability benefits such as PIP or ESA. Such thinking ignores the latest evidence into Post Exertion Malaise that exercise of any kind by someone with ME/CFS can greatly exacerbate their symptoms leaving them physically and mentally exhausted.
Hope for the future?
Last year NICE announced that it was going to have a initial public consultation over its ME guidelines. NICE initially wanted to see if there was any support for an update to its guidelines. Before the consultation started NICE had an 'expert' committee look into this issue. No surprise its recommendation was to NOT go forward with any consultation over its ME guidelines.
However, during the consultation period dozens of ME support groups and medical charities put a lot of pressure upon NICE. One of the highlights of this was the 15,0000 signature petition organised by the ME Association. By the end of the consultation period dozens of submissions had been sent to NICE calling for a full public consultation over its ME guidelines. They all cited new medical research from the United States showing ME is a biological illness. More importantly, they cited various scientific studies along with numerous large patient surveys which showed that current NICE treatments for ME/CFS such as CBT and graded exercise therapy were inappropriate and harmful to many people.
The upshot of this was that NICE beat a hasty retreat and succumbed to people power and conceded that in June 2018 it would go ahead with a full public consultation over its ME guidelines. We should take a moment to savour this. For the first time ever, the ME community has forced the medical establishment to make a major concession that could potentially lead to improvements in health care for a large group of disabled people who have been abandoned by the medical, legal and political establishment for over 30 years.