I receive no help or treatment, I am not a ‘patient’, why do you use that term?
There is a poor understanding of the illness amongst medical professionals which often means diagnosis can take a long time and people are frequently misdiagnosed, furthermore a diagnosis often means you receive poor treatment or none at all. However the foundation believes that everyone should be classed as a patient as they still have needs and the right to be receiving appropriate support.
There are ME charities that already provide us with support, why do we need another one, why can’t you work with the ones we have?
Progress in biomedical research has been very poor, the political and social factors involved in advocacy are often ignored or poorly managed. (see ‘how have other charities let patients down?’)
The Foundation can be a truly independent organisation that puts patients interest’s first because it is not tied to group agreements, or political influence. The Foundation is set up and run by patients who understand and appreciate the challenges that are faced and the urgency for change.
The Foundation is committed to collaboration and working with others where there is an opportunity to enhance the message or produce work that forwards the interest of patients without compromising our values of integrity, transparency, clarity, reliability and competency.
Shouldn’t we wait for a biomarker to start to demand appropriate treatment?
There is already plenty of evidence to support the biomedical basis for ME with over 9,000 research papers detailing various differences between patients and controls and the recent statement by the Institute of Medicine that ‘ ME/CFS is a serious, chronic, complex, systemic disease that often can profoundly affect the lives of patients.’ There are many other illnesses that are treated appropriately without biomarkers such as Parkinsons and Multiple Sclerosis (both of which rely on clinical examination), there is no good reason that ME couldn’t be also. There is a lack of urgency from all agents involved in delivering better outcomes for patients and our job is to make them realise that patients wellbeing and quality of life could be improved immediately, waiting for a biomarker that may not happen for years is too long to wait especially whilst patients are currently subjected to appalling treatment and abuse.
The biopsychosocial approach is helpful for some, why are you so against it?
We reject the biopsychosocial model of the illness and the willingness of some to recommend these treatments to ME patients since there is no evidence to support it. It shows a lack of understanding for the severity of the illness and by taking an uncompromising approach we can address the needs of very ill people’s lives. There is no reason why a patient who would like psychological help cannot ask for it, but there is a serious block in patients receiving appropriate care for what is a seriously debilitating illness. We understand that supportive psychological help can be useful for coming to terms with a chronic illness but the cognitive behavioural therapy used in ME is co-ercive and used to address the false illness beliefs and exercise avoidance in the biopsychosocial model a robust critique of the cognitive behavioural model can be found here. This is dangerous and encourages patients to push through symptoms which results in a reduction of physical and cognitive ability.
Why is there so much controversy about clinical definitions?
Until 1991, ME was defined according to the Ramsay definition and known as a biological illness. However, when the Oxford criteria was introduced it broadened the illness (with out sufficient evidence to support it) to anyone with fatigue for 6 months or more. This means that patients without ME but who have other fatiguing conditions can be included and misdiagnosed such as those with depression. Not only is this a problem clinically for physicians and patients it is also a problem for researchers investigating the abnormalities of ME. When criteria is not accurate, the research produced is not as reliable and cannot be compared or replicated as easily. The conflation of fatigue with ME was a successful attempt by those that support the BPS model of illness to confuse the situation and muddy the waters so they could push their agenda. They have now confused so many people that scientists are using different criteria and patients and the public are left confused as to what ME is. (see why the ICC Criteria for more information)
How has the insurance industry affected how ME is treated?
In 1994 Peter Lilley, the Secretary of State for Social Security hired John LaCascio from US Insurance firm UNUM (a company eventually convicted of fraudulent conduct in 2003resulting in a multimillion dollar settlement and the re-opening of 250,000 claims) to advise on ‘claims management’. A working group was set up which also included Prof Mansel Aylward who was the chief medical officer at the Department for Work and Pensions (DWP) and with who LaCascio authored a paper on the problems with work assessments for pyschosomatic conditions that recommends a reduced role of doctors in assessing patients . Their aim was to reduce benefit payments by introducing a more stringent work test and training doctors in UNUM’s aggressive methods of claims management. They targeted specific illnesses and ME was one that Professors Simon Wessely and Michael Sharpe were trying to reclassify as a psychological illness which would save the industry millions. Aylward, Sharpe and Wessely and professor White all proponents of the biopsychosocial model of illness attended meetings in Woodstock, Oxford on the topic ‘Malingering and Illness Deception’ and all became authors or steering committee members for the PACE trial, the only medical trial to be part funded by the DWP. The discredited PACE trial is used as evidence for using the biopsychosocial to reduce benefit payments and insurance costs and is used to support ensuring patients take CBT/GET as a condition of further support. More information on how the insurance industry has influenced welfare reform can be found in this publication by Mo Stewart, here by Kitty Jones and here by Jonathan Rutherford and here by George Faulkner.
When asked to comment on benefits or insurance claims we support the patient as much as is possible, but do not support claims for permanent disability or medical retirement until all reasonable efforts at rehabilitation have been tried.WEssely et al 1997
My doctor says I have Medically Unexplained Symptoms (MUS) what does this mean?
Medically Unexplained Symptoms is the latest label for patients with illnesses that are poorly understood and have a common symptom of fatigue, (examples include IBS, fibromyalgia and ME/CFS). A multitude of different physical issues are considered a psychological problem and patients are referred for help with CBT. It is claimed to have a large gender bias with 75%-80% of patients being female although research suggests otherwise. When a patient is referred for treatment through the Improving Access to Psychological Therapy (IAPT) pathway, they are then coded as having a psychosomatic illness and GP’s are discouraged from investigating any further symptoms which can be dangerous for the patient (“Within psychiatry medically unexplained symptoms have been classified under the somatoform disorder label” Simon Wessely, 2006). Treatment for ME patients is CBT and Graded Exercise Therapy as per the NICE guidelines (CG53) which are not fit for purpose and currently under review. IAPT was introduced as a cost saving exercise by reducing tests and referrals to specialists but has no evidence base and its aim is not to remove symptoms but teach patients how to live with them. ME patients should be very wary of this diagnosis since it could do them serious harm. (See also Functional Neurological Disorder).
My Doctor says I have Functional Neurological Disorder (FND) what does this mean?
FND, also known as conversion disorder, is classified as psychological and is listed in the Diagnostic and Statistical Manual of Mental Disorders. There is a large gender bias towards females (60%-75%) and predisposing factors include trauma or psychiatric symptoms, somatic symptoms, illness exposure, symptom monitoring and neurobiological factors. The ‘Sick role’ and secondary gain is claimed to reinforce and maintain FND (see here for more detail). The term functional was chosen after research (by Simon Wessely of PACE Trial and CFS research) showed patients are less likely to create conflict about a psychosomatic diagnosis. It means one things to patients and another to colleagues.
‘Functional Neurological Disorders (FND’s) is the name given for symptoms in the body which appear to be caused by problems in the nervous system but which are not caused by a physical neurological disease or disorder. Health professionals sometimes call these disorders ‘medically unexplained’, psychosomatic or somatisation. We prefer the term ‘functional’ which just means that the body is not functioning quite as it should. Although often considered inexplicable or mysterious, they can actually be easily understood as interference with normal brain function by the emotional centres of the brain.’ (Sheffield Teaching Hospital NHS Trust)
Symptoms include sensory issues, concentration problems, memory, fatigue, motor issues and dissociation or functional seizures. Management commonly involves physiotherapy or CBT. FND is a diagnosis ME patients should be very wary of since treatment is ineffective, even harmful as it fails to consider the medical risks of of a mistaken diagnosis. (See also Medically Unexplained Symptoms).
I heard patients have been harassing scientists, is this true?
No it isn’t. The PACE trial authors are facing a lot of criticism of their work which they have been unable to defend scientifically. As a result of this inadequacy, they try to discredit those who are asking important questions through an organised public smear campaign against patients in the media, saying that they are being harassed is one such example. At the PACE trial tribunal in 2015 they used this as a tactic as an excuse to withhold data, however the information officer was not persuaded and neither should you be.
There are over 100 scientists, lawyers and organisations also criticising their work, it is not “a fairly small, but highly organised, very vocal and very damaging group of individuals” (Richard Horton – editor of The Lancet in an interview on Australian Radio in 2011). We are asking for answers that they are still unwilling to provide. The easiest way to solve this would be to release all of the PACE trial data for independent analysis but they refuse to do this.
There are many scientists working on ME/CFS who have a good relationship with patients as shown throughout the world where conferences take place that involve both researchers and patients working together.
Watch this video by Adam a patient, for further context https://youtu.be/-rCA-pcqbMY
How have other charities let patients down?
Patients have been let down by charities in numerous ways but siding with establishment politics and only supporting patients in the context of vested interests has been the most damaging. One of the largest charities Action for ME was involved in supporting the discredited PACE trial and helped give the illusion of patient support, ignoring patient concerns when they should have been representing them. Both Action for ME and the ME Association have been weak in challenging the biopsychosocial model of the illness and have been willing to work with researchers who have ignored ethical procedures, manipulated research outcomes and have treated patients very badly, even smearing them in public. Only relatively recently did ME Association warn patients against the treatment of GET, guiding patients to these clinics even though their own surveys showed how damaging this could be. They still disseminate misleading and potentially harmful information via social media and their websites. Charities failing to reflect on their own roles at a time when it’s important to step up mean they are part of the problem. It is important to note that other small charities have made valuable contributions with limited resources.
How is the ME Patient Foundation different from other charities?
We are a charity set up by patients with extensive experience in living with ME so we understand the severity of issues patients face and are willing to challenge the status quo. Ethics is at the heart of what we do and with patient and charity interests aligned we are well placed to push for the change sorely needed to improve patients quality of life without needing the science to catch up after 30 years of neglect. We will remain independent of government and other groups that impose conditions for a working relationship, but will collaborate with like-minded organisations and those involved with the disability movement. More information on this can be found on our website pages, About Us and Ethics. Sign up to our newsletter to keep informed of our work.