A high-risk threat to ME patients
Source: NHS Website
In 1997 Wessley, Chalder and Sharpe wrote a paper on managing chronic fatigue syndrome (CFS) which was to become the basis of current thinking behind Medically Unexplained Symptoms (MUS) and its management through Increasing Access to Psychological Therapies (IAPT), a service being rolled out throughout England providing anxiety and depression treatment.
Somatization disorder describes a syndrome of multiple, recurrent, medically unexplained symptoms, with onset usually in adolescence or early adult life. The goals of management are usually limited to long-term support and reducing use of medical resources. The illness defined by the term “chronic fatigue syndrome” is important not only because it represents potentially treatable disability and suffering but also because of the light it sheds on the shortcomings in our present approach to medically unexplained illness.WESSLEY ET AL 1997
This thinking is re-enforced in the book ‘Science and Practice of Cognitive Behaviour Therapy’ by Sharpe which is edited by David Clarke, a co-architect of IAPT, and which sets out a plan to integrate the treatment of mental health with organic disease using fatigue as a catch-all symptom to be treated with CBT. Pushing the integration of psychological therapies into general practice, the hope is this will permeate many areas of medicine as was discussed at this NHS event.
IAPT have repeatedly claimed that there are 3 to 4 times as many women as men with MUS – so 75% to 80% women (see here and here), however they frequently cite research that fails to support this, finding a level of only 57% women, while other research shows MUS rates are no higher in females. It is more likely that such attendance figures ( 63% of all IAPT referrals not just MUS are female ) reveal women are more health vigilant, willing to seek help and being discriminated against and wrongly diagnosed.
Women in particular have been and still are frequently mistreated in healthcare, a problem explored by Dr Claudia Gillberg here, in Maya Dusenbery’s book Doing Harm, and the systemic data bias is addressed in Caroline Criadoperez’s book Invisible Women. MUS (previously MUPS) seems to be its latest re-incarnation and is being addressed through IAPT. Its aim is clear, a reduction of costs rather than improvement in patient health as shown in this NHS commissioning support for London report.
The economic case for IAPT is based primarily on the fact that any costs will be covered by the savings made to the NHS. ‘Total savings of £1.75 for every £1 invested were calculated for a comprehensive programme, and £7.82 for every £1 invested for a targeted programme, with most of the pay-offs accruing to the NHS’ (Martin Knapp 2012), meaning the reduction in patients’ attendance at GPs and A&Es will be a crucial part of its success. With 2/3 of the expansion of this programme in 2020/2021 intended to include those with MUS and long-term health conditions (IAPT Implementation guidance 2018), it is clear where their focus lies.
There now seems to be an all encompassing term and a diagnosis in its own right with a code of F45 Somatisation in ICD-10 being given to patients on referral to IAPT.
There is really no clear dividing line between LTC (long-term conditions) and MUS; most of the patients with LTC also have MUS and visa versaUniversity of Surrey IAPT pathfinder evaluation project interim report
As well as scant evidence for MUS existing, recovery through IAPT is actually only 9.2% according to this latest research not 50% as mandated by the government and repeatedly quoted within the NHS, a figure based on reported subjective improvements of depression and anxiety NOT physical symptoms. Some areas are even giving a reliable improvement rate of 80% (Realising the Mass Public Benefit of Evidence -Based Psychological Therapies, The IAPT Programme, Clarke, 2018).
NHS England has agreed to play its full part in delivering the commitments that at least 15% of adults with relevant disorders will have timely access to services, with a recovery rate of 50%.A mandate from the Government to NHS England: April 2014 to March 2015 pg 15
There is no specific NICE guidance on MUS currently but they do refer to the individual guidance for each underlying condition. However there are implications concerning IAPT and the NICE review of CG53 ME/CFS which produces many unanswered questions. The IAPT training currently given to therapists treating ME/CFS includes understanding that ‘lifestyle, stress, perfectionism and distress’ contribute towards its development’ and that ‘boom and bust cycles, unhelpful fear avoidance beliefs leading to avoidance of activity, attentional biases towards symptoms’ can perpetuate symptoms (it must be made clear that there is no scientific evidence for any of these claims concerning ME). Furthermore they clearly believe ME/CFS to be a functional somatic disorder as stated in the royal colleges MUS guide from the Joint Commissioning Panel for Mental Health (JCPMH) which contradicts ME’s World Health Organisation classification. Treatment suggests ‘establishing a consistent approach to activity initially before gradually increasing activity levels‘ and ‘ensure that a focus on graded exercise is integrated into the intervention’, ‘bed restriction’ and ‘work on unhelpful thoughts related to engaging in activity more consistently and perfectionism, generate alternatives and help the client test these out with gradual behaviour change and behavioural experiments’, (A similar position is put forward for children). A robust critique of this cognitive behavioural model is published by Keith Geraghty et al here. That this model is used indicates a poor level of understanding of ME and the potential of these therapists to harm through graded exercise, particularly when we get into the realms of ‘sensations’ rather than ‘symptoms’ and ‘dis-ease’ rather than ‘disease’. These ‘treatments’ are effectively snake oil and such attitudes resemble those displayed towards other untreatable conditions in the past, e.g. MS and TB (before the discovery of effective antibiotics in the case of the latter).
The roll out of this programme has come before any independent assessment or verification and the validity of the data is in question as discussed by David Tuller here and here. GPs also have concerns and the dropouts from the system could indicate a serious issue.
MUS is not—or at least should not be—an actual diagnosis. As Dusenbery points out, it is being regarded and presented as a legitimate and discrete disease entity. This perspective rests on fallacious reasoning and is not only absurd but ultimately harmful to patients.David Tuller 2018
While the benefits of the MUS classification are unclear, the risks and faults are evident. Due to PEM, CFS patients might respond differently to an exercise regime than patients with pain syndromes. By grouping both types of patients into one clinical entity, MUS fails to provide therapists with the necessary information to offer the most adequate care.Michiel Tack 2019
Another concern is the implication of patient pathways that suggest the patient should co-operate with GPs regarding the BPS explanation of their symptoms or face being referred to secondary psychiatric services.
This pathway is a serious threat to the well-being of ME patients and as such should be avoided. More broadly, women, the medical community and the general public need to be aware of the morbid threat MUS presents in another era where doctors are being asked to arrogantly dismiss limitations to scientific knowledge and assume these symptoms are psychological in origin. Peoples lives depend on it.