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 means diagnosis can take a long time and people are frequently misdiagnosed, furthermore an ME diagnosis often means you will receive poor or even no treatment. The foundation believes every ME sufferer should be classed as a patient as they still have needs and the right to be receiving appropriate support.
There are ME charities already providing support, why do we need another one, why can’t you work with the ones we have?
Progress in biomedical research has been extremely slow and 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 putting patients’ interests first because it is not tied to group agreements, or political influence. The Foundation is established and run by patients who understand and appreciate the challenges faced and the necessity and 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 forwarding patient interest 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 a plethora of evidence supporting the biomedical basis for ME with over 9,000 research papers detailing various differences between patients and healthy controls, something supported by the US Institute of Medicine – ‘ ME/CFS is a serious, chronic, complex, systemic disease that often can profoundly affect the lives of patients.’ There are several serious illnesses treated appropriately without biomarkers, including Parkinson’s disease and multiple sclerosis (both of which rely on clinical examination), there is no reason that ME couldn’t be treated in a similar fashion. There is a lack of urgency from all agents involved in delivering better outcomes for ME patients and we aim to make them realise that patient wellbeing and quality of life could be improved immediately, waiting for an ME-specific biomarker that may not be discovered for years is impractical and unnecessary especially while patients are currently being subjected to appalling treatment and abuse.
The biopsychosocial approach is helpful for some, why are you so against it?
We reject the biopsychosocial (BPS) model of the illness and the willingness of some ME charities to recommend BPS treatments to ME patients as there is limited evidence to support it while its main therapies for ME patients, cognitive behavioural therapy (CBT) and graded exercise therapy (GET), have caused serious harms in many patients. Fundamentally, the BPS model reveals a profound lack of understanding of ME by its proponents, and its promotion over the past three decades has inhibited biomedical research while stigmatising patients. By adopting such an uncompromising approach, we can better address the needs of a severely ill patient population. There is nothing to prevent a patient seeking psychological help if required, but such psychologically-based therapies can present a serious barrier to patients receiving appropriate care for this debilitating disease. We appreciate that supportive psychological help can be useful for coming to terms with chronic illness but the form of CBT practised in ME is coercive and used to address the supposed false illness beliefs and exercise avoidance proposed by the BPS model: a robust critique of the cognitive behavioural model can be found here. This is potentially dangerous, encouraging patients to push through symptoms, often resulting in reduced, sometimes severely reduced, physical and cognitive ability.
Why is there so much controversy about clinical definitions?
Until 1991, ME was defined according to the Ramsay definition and accepted as a biological (neurological) Disease. Following introduction of the Oxford criteria its definition was broadened (evidence for introducing new diagnostic criteria was lacking) to anyone suffering fatigue for 6 months or more. Multiple conditions include fatigue as a symptom, e.g. depression, resulting in patients with such illnesses finding themselves erroneously with an ME, or more likely CFS (the favoured terminology for the illness from the late 1980s) diagnosis. This is problematic for physicians and patients, and biomedical researchers investigating ME. When the diagnostic criteria is inaccurate, leading to patients with other conditions being included in clinical trials of ME patients, any research produced will be unreliable and cannot be compared or replicated easily. The conflation of fatigue with ME was a successful attempt by proponents of the BPS model to confuse the situation and muddy the waters so they could promote their agenda. This has resulted in scientists researching ME using different diagnostic criteria, while both 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 convicted of fraudulent conduct in 2003 resulting in a multimillion dollar settlement and the re-opening of 250,000 insurance claims) to advise on ‘claims management’. A working group was established which included Prof Mansel Aylward, the chief medical officer at the Department for Work and Pensions (DWP) with whom LaCascio authored a paper on the problems with work assessments for pyschosomatic conditions that recommended a reduced role for medical doctors in assessing patients. They aimed 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, particularly ME, a disease that Professors of psychiatry Sir Simon Wessely and Michael Sharpe were attempting to reclassify as a psychological illness, something that would save the medical insurance industry millions in insurance payouts. Aylward, Sharpe, Wessely and professor Peter White (another professor of psychiatry), all zealous proponents of the BPS illness model, attended meetings in Woodstock, Oxford on the topic ‘Malingering and Illness Deception’. Subsequently, they would all became authors or steering committee members for the PACE trial, the only medical trial to be part-funded by the Department for Work and Pensions (DWP). The now discredited PACE trial was used as evidence for utilising the BPS model to reduce benefit and medical insurance payments for the sick and disabled, it has also been use to pressurise ME patients into undergoing CBT and/or GET as a condition for 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, 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, e.g. IBS, fibromyalgia and ME/CFS. A multitude of different physical issues are considered to have a psychological basis 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. If a patient is referred for treatment through the Improving Access to Psychological Therapy (IAPT) pathway, they are coded as having a psychosomatic illness and GPs are discouraged from investigating their symptoms any further (“Within psychiatry medically unexplained symptoms have been classified under the somatoform disorder label” Simon Wessely, 2006). Recommended treatment for ME patients is CBT and GET as per the NICE (National Institute for Clinical Excellence) guidelines (CG53) which are unsuitable and currently under review. IAPT was introduced as a cost saving exercise by reducing ‘unnecessary’ medical tests and referrals to specialists. It has no evidence base and its aim is not to relieve/remove symptoms but teach patients how to live with them. ME patients should be wary of this diagnosis as it could lead to serious harms (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 a psychological condition and 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 details). The term functional was chosen after research (conducted by Sir Simon Wessely) showed patients were less likely to create conflict concerning a psychosomatic diagnosis (almost certainly due to being unaware they’d been given one). It means one thing to patients and another to colleagues. This is a particularly unscrupulous and mendacious method of determining diagnostic terminology that shames the medical profession, a profession that prides itself on living by the words ‘do no harm’.
‘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 wary of, and dispute given their neurological disease is effectively being reclassified as a psychosomatic one, since treatment is ineffective and even harmful as it fails to consider the medical risks of an incorrect diagnosis (see Medically Unexplained Symptoms).
I heard ME patients have been harassing scientists, is this true?
In one word, no. The PACE trial authors have faced significant criticism from patients, biomedical researchers and various other academics, which they have been unable to dispute scientifically. Their response, aided by allies in the media and the Science Media Centre (SMC, a strong proponent of the PACE trial whose ME adviser is Sir Simon Wessely), has been to try and discredit those challenging PACE through an organised public smear campaign against patients (it is no accident that they prioritise targeting vulnerable patients over academics critiquing their research), claiming harassment by patients is a prime example of such smearing. At the PACE trial tribunal in 2015 they used this tactic as an excuse to withhold data, however the information officer found there was no evidence of such harassment.
Numerous scientists, lawyers and ME organisations have criticised The PACE trial, it is not “a fairly small, but highly organised, very vocal and very damaging group of individuals” as claimed by Richard Horton, editor of The Lancet and a strong proponent of PACE and the BPS model, in an interview on Australian Radio in 2011. We are asking for answers that they are unwilling to provide. The easiest way to solve this would be to release all of the PACE trial data for independent analysis, something the authors still refuse to do. Science progresses through criticism, any researchers trying to prevent their work being examined in such a manner, as is the case for the PACE trial authors, are unworthy of the name.
Watch this video by Adam a patient, for further context https://youtu.be/-rCA-pcqbMY
How have other charities let patients down?
ME Patients have been let down by charities in numerous ways, allowing the pejorative term CFS to replace ME (a WHO defined neurological condition), failing to confront proponents of the BPS model when they moved into the field of ME, siding with establishment politics and only supporting patients in the context of vested interests, have all proved damaging. One of the largest ME charities, Action for ME, was involved in supporting the PACE trial, a trial predicated on ME being a psychosomatic, behavioural condition, giving the illusion of patient support and ignoring patient concerns when they should have been representing them. Both Action for ME and the ME Association have been weak in challenging the BPS illness model and been willing to work with BPS researchers who have ignored ethical procedures, manipulated research outcomes and treated patients badly, even smearing them in public. Only relatively recently did the ME Association warn patients against GET (a therapy that has ruined the health of many patients), guiding patients to GET clinics even though their own surveys showed how damaging this treatment was. They still disseminate misleading and potentially harmful information via social media and their websites. Charities failing to reflect on their role at a time when it’s important to step up means they are part of the problem. It is important to note that other small ME charities have made valuable contributions with limited resources.
How is the ME Patient Foundation different from other charities?
We are a charity established by patients with extensive experience of living with ME so we understand the significant 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 waiting for the science to catch up following 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 can be found on our website pages, About Us and Ethics. Sign up to our newsletter to keep informed of our work.