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‘Medically Unexplained Symptoms’ - Diverting 5-Year Funding from Mental Health

by Nancy Blake(more info)

listed in cfs me, originally published in issue 240 - August 2017

 

Commissioning inappropriate mental health services for people with complex medical disorders would be an unethical use of funds which are desperately needed for people who have genuine mental health problems. 

Cover Joint Commissioning Panel

The Joint Commissioning Panel for Mental Health have produced Guidance for commissioners of services for people with medically unexplained symptoms (MUS),[1] which urges the creation of NHS-wide services for this patient group. This report insists that MUS is a widespread mental health problem, for which treatments, which must be based on the BPS (biopsychosocial model), are ‘evidence based’, and would ‘result in improved outcomes for patients and substantial cost-savings for the healthcare system’.

What, Exactly, is MUS? 

According to the first of the ‘Ten Key Messages for Commissioners’[1], MUS ‘refers to persistent bodily complaints for which adequate examination does not reveal sufficient explanatory structural or other specified pathology.’  The symptoms are common, ‘presented in various degrees of severity in all areas of the healthcare system.’  Many have ‘complex presentations caused, or exacerbated, by co-morbid mental health problems’.

Table 1 - Functional Somatic Syndromes by Specialty

Specific symptoms/conditions are listed in Table 1. Functional somatic syndromes by specialty. This list includes Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, along with Irritable Bowel Syndrome, Fibromyalgia/Chronic Widespread Pain, Temporomandibular Joint Dysfunction, Multiple Chemical Sensitivity. The label ‘Functional somatic syndromes’ reinforces the assumption that these are all mental health issues. 

This ‘filter bubble’ effect is completed by the failure to mention the extensive medical research which exists concerning these conditions, and references only to articles which presuppose that these are ‘somatoform’.

Footnote

Thanks to the Science Media Centre,[2] UK media is dominated by the psychiatric model of ME/CFS.  To get beyond this, a good starting point is the Invest in ME Research Colloquium/Conference Site - 12th Invest in ME International ME Conference 2017,  www.investinme.eu/IiMEC12.shtml  which provides information about the latest developments in medical research presented by international experts from a number of research centres around the world.  Invest in ME Research Colloquia and Conferences, held for the past 12 years in London, are never mentioned in the UK mainstream media.

The Psychiatric ‘Turf-War’ Over ME/CFS

Ever since McEvedy and Beard, in 1970, produced a paper,[3] based on 15-year-old hospital notes, asserting that ME is a form of ‘mass hysteria’, there has been a conflict between the psychiatric model of ME, and the medical model which asserts that this is a complex, multisystem disorder, probably viral, involving measurable physiological disturbances which are proportionate to the severity of the symptoms.[4]

For example, in 1994, a UK Task Force produced a report [5] concluding that ME/CFS was a physiological disorder.  This was countered by the 1996 Joint Report of the College of Physicians, Psychiatrists and General Practitioners [6] which insisted, in the face of protests from some members, that the disease, now only referred to as Chronic Fatigue Syndrome, was purely psychiatric. Psychiatrists and doctors who adhere to the medical model do agree that ME/CFS is very often precipitated by an apparently mild, flu-like illness, and that exercise ‘exacerbates symptoms’.[7-8]

The medical experts involved with hospital outbreaks, notably the 1955 Royal Free Hospital epidemic, insisted that complete rest from the inception gave the best prognosis, and that the future course of the disease was determined largely by whether the patient was able to get the rest needed to permit improvement or recovery.[8-9]

The psychiatric model diverges at this point.  This holds that the patient, having rested during the course of the mild illness, has become anxious about relatively minor symptoms following exertion.  While now physically recovered, the patient is assumed to have become deconditioned by bed rest, hypersensitive and anxious about what are minor symptoms, and involved in a vicious cycle of further inactivity, deconditioning, minor symptoms, anxiety and continued inactivity.[10] The patient has developed the ‘false beliefs’ that they have a serious physical illness, and that exercise will cause them harm.[10]

The appropriate treatment in terms of this model is for Cognitive Behaviour Therapy (CBT), to challenge the ‘false beliefs’, and Graded Exercise Therapy (GET), to address the deconditioning, improve fitness, and increase the patient’s activity level.[11]

The group of psychiatrists which support this model were able to get £5,000,000 in funding from the Medical Research Council and the DWP for ‘the PACE Trial’[11] which purported to show that CBT and GET were ‘safe and effective’ treatments for ME/CFS.  When there are references to ‘evidence-based’ treatments in subsequent literature about ME/CFS, this trial is the source. This group were subsequently able to access £200,000 to resist FOIA applications for the data based on the original criteria for recovery, which were lowered during the course of the trial.[12]

Backed by this ‘evidence’, further thousands of NHS money were found to create a network of specialist ME/CFS centres offering these treatments.[13]  (Other treatments have been added, such as relaxation and mindfulness.)  Patients have protested against the psychiatric model and against these treatments, asserting that CBT is largely unhelpful, and that GET has caused many mildly or moderately ill patients to deteriorate into severe and apparently irreversible levels of incapacity, pain (level 8 to 10), excruciating sensitivity to light, sound, chemical stimuli, ongoing fluctuating paralyses, and a range of other symptoms ascribable to multiple organ damage. [14-15] Psychiatrists state that patient protests are based on a resistance to the stigma of a psychiatric label.[17] Patients insist that their objections are to treatments which make them worse. [14]

Extensive medical research over the years continues to show physiological abnormalities which cannot be explained by a psychiatric narrative.[15], [18-19]  The counterclaim by psychiatrists is that a psychiatric narrative is not necessary to explain disorders variously labelled ‘functional’, ‘somatoform’, ‘conversion’ etc.[21]  On the other hand, Dimsdale and Levenson[22] discuss the DSM5 ‘somatoform symptoms’ classification as a positive diagnosis, superior to the now disused term ‘medically unexplained symptoms’, as follows:

“Note that the diagnosis of somatic symptom disorder in this case is based on criteria that are present rather than lack of explanation of symptoms; furthermore, these criteria focus on territory familiar to psychiatrists and psychologists—thoughts, feelings, and behaviours. The removal of the emphasis on medically unexplained symptoms allows a focus on patient suffering without questioning its legitimacy or ‘reality’. Furthermore, finding somatic symptoms of unclear aetiology is not sufficient to make this diagnosis. In the absence of abnormal thoughts, feelings, and behaviours, patients with irritable bowel syndrome, chronic fatigue, or fibromyalgia would not qualify for a diagnosis of somatic symptom disorder.”  (My emphasis.)

So ‘medically unexplained symptoms’ has been removed from the most recent edition of the DSM, and irritable bowel syndrome, chronic fatigue, and fibromyalgia don’t figure as psychiatric disorders.  This is affirmed by Suzy Chapman and cited by Frances [20] “The Work Group is not proposing to classify Chronic Fatigue Syndrome, Irritable Bowel Syndrome and Fibromyalgia within the DSM-5 Somatic Symptom Disorders’ section.”  (Although he adds “In the field trials, more than one in four of the irritable bowel and chronic widespread pain patients who comprised the ‘functional somatic’ study group were coded for ‘Somatic Symptom Disorder.’)”  Are the authors of the Guidance trying to take us back to concepts which have been rejected by recent psychiatric opinion?

The IOM Report

In 2013, the US Institute of Medicine invited a task force to develop diagnostic criteria for ME/CFS. Their report was published in February 2015.  Titled Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness [23] it stated: ‘It is clear from the evidence compiled by the committee that ME/CFS is a serious, chronic, complex, and multisystem disease that frequently and dramatically limits the activities of affected patients’.  (Chapter 7, pp 1,2) The initial Summary refers to ‘the misconception that it is a psychogenic illness’ (Chapter 1, p 2)

Finally, in the text leading up to Recommendation 4, “that this disorder be renamed ‘systemic exertion intolerance disease’, it states: ‘Systemic exertion intolerance’ captures the fact that exertion of any sort - physical, cognitive, emotional - can adversely affect these patients in many organ systems and in many aspects of their lives.  The committee intends for this name to convey the complexity and severity of this disorder.”

This is an unequivocal assertion that ME/CFS is a disease, not a ‘psychogenic illness’ in which exertion “may adversely affect these patients in many organ systems…”

In plain language, the patients are correct to believe that they suffer from a serious disease in which exercise can cause multisystem damage. 

If accepted, the recommendations of this report dismiss psychiatry as having any relevance to this disease, and affirm that the imposition of any regime of increased exertion can cause serious multisystem harm.  CBT becomes irrelevant; GET becomes medical abuse.

During the time when this report was being produced, the PACE Trial results were being subjected to international criticism. [12]

It was apparent from the original report that 1) Use of an actometer, which would give an objective recording of any increase in activity, was tried out in the pilot stage, then dropped from the trial.  2) One of the original criteria for measuring recovery was lowered, in mid-trial, to a point lower than the score required to qualify as sick enough to enter the trial. 3)  Patients were given a leaflet which was enthusiastic about the treatments they were receiving, also in mid-trial.  These weaknesses in the trial design were already significant, and had begun to attract criticism from US academics.[12]

After several failed attempts to gain access to the original data via a FOIA request, in order to subject it to reanalysis, a ruling in the claimant’s favour allowed this to take place.[12] Competent statistical analysis indicates that the reported improvements were insignificant, as well as not maintained long-term. [16]

It is even rumoured that in some US universities, this trial is used in classes teaching scientific research methods as an example of bad design.

Implications

The IOM report and the discrediting of the PACE Trial would logically have the result that:

  1. ME/CFS is recognised as a complex physical disease, and taken entirely out of the province of the psychiatrists; 
  2. Treatments based on the psychiatric model would be recognised as potentially harmful, and the specialist centres offering these treatments either be dismantled, or reorganised to offer treatments based on what is already known about the physiological abnormalities;
  3. The central tenet of the IOM report, that exertion can cause multisystem harm, should direct us back to the original treatment recommendation from Dr. Ramsay:  complete rest from the inception gives the best prognosis; the potential for improvement or recovery depends directly on the ability of the patient to minimize exertion in his everyday life.[8]
  4. Research funds previously spent on attempting to justify CBT/GET should now be directed towards understanding the complexities of viral activity, the immune system including the gut biome, the microglia, the recently discovered channels linking the brain to the immune system, the mitochondria…the range of factors which are found in these complex, multisystem challenges.

But This would be a Catastrophic Blow to the Psychiatric Establishment

It is clear that the psychiatric establishment would experience this as a catastrophic blow to individual and institutional reputations, and to the whole network of services which has been subsidising numerous jobs depending on the psychiatric model:  psychiatrists, psychologists, physiotherapists, nurses, etc. 

It would also undermine the agreements which some have with medical insurers, to keep ME/CFS under the psychiatric remit, thus saving money in disability payments. [12]    Remember, also, that the DWP funded the PACE Trial.  .

So How Do They Fight Back?

The IOM conclusions are based on consideration of 9,000 research publications:  ME/CFS and related chronic multisystem illnesses are very far from ‘medically unexplained’ even though still some way from being completely medically understood.  (This has not stopped some from the psychiatric model complaining that the whole report is simply a concession to the pressure of patient advocacy)  But its conclusions remain well founded and clearly stated.

The admission that patients can have a somatoform disorder without an explanatory narrative[21] is an admission that these conditions are very definitely not ‘psychiatrically explained’.

The flaws in the PACE Trial are clear and unequivocal, (although this hasn’t stopped a flow of articles and research projects on the same lines, reaching the same conclusions). 

But if you create a psychiatric category for all of the complex, multisystem conditions that are not yet medically understood (partly because all the research funding available has so far diverted into treatments based on the psychiatric model), call it ‘medically unexplained symptoms’ and then simply slot all these conditions into that category, you don’t even need to mention the IOM or PACE.  And you can get funding….

The Five Year Forward View for Mental Health [24 ]

There has been a tremendous and successful effort to improve funding for mental health services.  Mental health has always been a bit of a Cinderella issue in the NHS, and improved funding is very much needed.  It has now been promised, and The Five Year Forward View sets out the conditions and types of services for which this funding will be used.

 ‘Medically unexplained symptoms’ does not appear anywhere in this document.

 ‘The Five Year Forward View’ is followed by a more detailed plan for its implementation.

‘Implementation of the Five Year Forward View for Mental Health’ [25]

This report contains just three, almost incidental references to ‘medically unexplained symptoms’:

  • p. 16 ‘Two-thirds of the additional people receiving services will have co-morbid physical and mental health conditions or persistent medically unexplained symptoms.’   ‘This approach is also expected to release significant savings and efficiencies for the NHS, based on evidence which demonstrates reduced healthcare utilization in, for example, A&E attendances, short stay admissions and prescribing costs’;
  • p. 17 Workforce requirements.  ‘This includes top-up training in new competencies for long-term conditions and medically unexplained symptoms…’;
  • p. 18/19  Investment and Savings.  ‘The strongest evidence is in diabetes, COPD, cardiovascular disease and for some people, chronic pain and medically unexplained symptoms’.

These almost off-hand references, without any discussion or explanation, are all that you find in this document.

However, by the time MUS has reached the Guidance for Commissioners, ‘medically unexplained symptoms’ has blossomed into a major health problem requiring extensive services, staffing, models of care and training of staff,  along with assurances that these services will pay for themselves in improved patient outcomes.

The Guidance for Commissioners of Services for patients with MUS [1]

It begins with a list of ten key messages for commissioners:

  • MUS ‘refers to persistent bodily complaints for which adequate examination does not reveal sufficient explanatory structural or other specified pathology.’  The symptoms are common, ‘presented in various degrees of severity in all areas of the healthcare system.’  Many have ‘complex presentations caused, or exacerbated, by co-morbid mental health problems’.
  • ‘MUS accounts for approximately 10% of total NHS expenditure on services for the working age population in England.’
  • Patients ‘are often subjected to repeated diagnostic investigations and costly referrals and interventions.’ 
  • ‘Without appropriate treatment, outcomes for many patients with MUS are poor.  While evidence-based treatments for patients with MUS exist, they are rarely available.’ 
  • ‘Appropriate services for people with MUS should be commissioned in primary care, community, day services, accident and emergency (A&E) departments and inpatient facilities.’
  • ‘a new kind of multidisciplinary approach is required’; ‘All healthcare professionals should integrate both physical and mental health approaches in their care.’
  • ‘Education and training are essential to ensure that all healthcare professionals develop and maintain the skills to work effectively with patients experiencing MUS.’
  • Finally, ’10.  Implementation of appropriate services would result in improved outcomes for patients and substantial cost-savings for the healthcare system’.

In sum, these patients include everyone who has persistent bodily complaints which cannot be explained by ‘adequate’ investigation.  They cost the NHS a lot of money.  ‘Evidence-based’, therefore presumably effective, treatments exist but are not sufficiently available.

However costly, ‘implementation of appropriate services’ will result in ‘substantial cost-savings for the healthcare system’.

Implementation of appropriate services involves commissioning such services in ‘primary care, community, day services, A&E departments and inpatient facilities’.  NHS-wide, this will be a very expensive project.

In addition, the ‘new kind of multidisciplinary approach’ will involved ‘bringing together professionals with skills in general practice, medicine, nursing, psychology/psychotherapy, psychiatry, occupational therapy and physiotherapy’.

Presumably in the entire range of settings mentioned above.

In addition, ‘all healthcare professionals’ should integrate both physical and mental health approaches in their care.  Therefore, ‘education and training are essential to ensure that all healthcare professionals’ do this.

It is difficult to comprehend how expensive it would be to implement all this team-building and training across the NHS.

However, we are assured that all this, with the provision of ‘evidence-based’ treatment, ‘would result in improved outcomes’ and ‘substantial cost-savings’.

At this point, one would hope that commissioners would want some hard data on outcomes to assure themselves that these services will provide effective treatment with demonstrable positive outcomes for patients, resulting in actual cost-savings, both within the healthcare system and for the economy as a whole, as patients recover and rejoin their previous jobs, professions or educational endeavours. 

The section ‘What are MUS services?’ explains that ‘patients with MUS are more likely to attribute their illness to physical causes, rather than lifestyle factors’.  ‘Patients with a combination of symptoms will often present to primary care or A&E departments seeking appropriate treatment.’ 

The section concludes by assuring us that ‘There are many different explanatory models for MUS, but it is widely recognized that a positive, proactive approach to MUS…is beneficial’.  ‘Substantial benefits in terms of function and severity of symptoms can be achieved through the early use of good communication skills…’  (To communicate what?  Is this code for ‘good at convincing patients that they have a psychosocial disorder’?)

It does not seem unreasonable that patients with a persisting set of complex symptoms would think in terms of physical causes, or that they would be ‘seeking appropriate treatment’.

One would hope that such an extensive and expensive range of services would have to be justified by a clear explanatory model and specific treatments whose effectiveness could be explained in terms of the way it intervened with that model, and by statistics based on rates of clearly defined improvement or recovery by patients receiving such treatments.

 Being ‘widely recognised’ as ‘beneficial’, without a clear explanatory model or any reference to specific research reports or statistics on recovery rates seems a very weak justification for the provision of expensive services.

The report does provide a list of conditions, now called ‘functional somatic syndromes:

Table 1 Functional somatic syndromes. 

These are Irritable Bowel Syndrome, Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, Post Concussion Syndrome, Chronic Pelvic Pain, Fibromyalgia/Chronic Widespread Pain, Non-cardiac chest pain, Hyperventilation, Temporo-mandibular Joint Dysfunction, and Multiple Chemical Sensitivity.

Implicit throughout this report is that these conditions belong within a psychiatric remit, even though it is mentioned that ‘psychiatric morbidity is not directly associated with the presence of MUS’This leaves us with the question:  are these ‘medically unexplained symptoms’ also ‘psychiatrically unexplained’? 

On causation:  ‘The risks or associated factors for MUS include being female, younger in age, and currently employed.  Childhood adversity and/or abuse and the severe illness or death of a close relative are also factors associated with MUS.  MUS may be caused by physiological disturbance, emotional problems, or pathological conditions which have not yet been diagnosed.’

How does ‘being female, younger in age, and currently employed’ become a ‘risk factor’ for an obscure set of inexplicable symptoms?  Vague statistical correlations, in the absence of an explanatory mechanism, do not constitute evidence of a causal connection.

What is meant by ‘physiological disturbance’?  Is this a way of introducing or admitting to a physiological element into what is supposed to be a mental health problem unrelated to any actual physiological cause?

What ‘pathological conditions’ may not yet have been diagnosed? 

The potential for ‘iatrogenic harm’ from invasive diagnostic testing is mentioned several times….but if the symptoms may arise from ‘a pathological condition which has not yet been diagnosed’, does that not suggest that further diagnostic efforts might be justified? 

And if this is the case, then the patients are right to ascribe their symptoms to a physical disorder, and to seek appropriate treatment.

For the rest of the patients with MUS, if there is clear, convincing evidence that treatments exist which can make these patients better, the expense may be justified.  One hopes that the Guidance will provide at least some indication of what these treatments might be.  However at any point where one might expect this information to appear, the Guidance reverts to describing a structure and a general approach, rather than anything more specific

The report asserts “Services for people with MUS must be multidisciplinary and adopt a bio-psychosocial approach”. The bio-psychosocial approach is based on consideration of illness within the patient’s relational and social context as well as the biomedical aspects of their illness.  In the case of an illness which is presumed not to have a biomedical foundation, the focus becomes exclusively on relational and social factors. It is not clear, in the report, whether the category ‘medically unexplained symptoms’ is meant to imply that symptoms may have a medical explanation, which remains to be discovered, or that the symptoms have no biomedical explanation and can be treated as such. 

A warning about the harm that doctors can cause by “pursuing inappropriate investigations”, and “over-treatment”…”in extreme cases more invasive treatments such as urinary catheters and tube feeding”.  For these complex and difficult cases, “regional/national specialist MUS inpatient units for patients with the most complex and costly needs” are suggested.  When a patient is sick enough to be judged to need catheterization/tube feeding, it seems that still it is psychiatric/psychological therapies which are to be relied on to help these patients get better.  What is the mechanism by which a mental health problem can cause a patient to get this sick?  Are there examples of these very sick patients having recovered from this state through treatment based on the model presented in the Guidance? Have any such patients died despite care based on the BPS model?  If so, how is this explained?

Figure 1 - Care Pathways that Integrate Physical and Mental Healthcare

Where one might expect examples of specific treatment methods, along with case histories and statistics concerning outcomes, one finds a diagram of the theoretical model (Figure 1, p. 11), or descriptions of a service, for example, Case Study, p. 14:

“Aim of admission is to make detailed assessments and deliver the required bio-psychosocial interventions on a recovery-focused  basis”  “The treatment plan should be agreed at admission.”  “Discharge criteria will not be time-limited, but determined by monitoring of benefit gained.”  “A proactive approach to collaborating with and handing over to appropriate local services…with treatment continuing in community and outpatient settings.”

Assessments..of what?  Based on what?  The “required bio-psychosocial interventions” – what will these be?  “recovery-focused basis”.  One would assume that treatments would be focused on recovery…or does this mean that the patient is to be encouraged to think they will recover?  Or be blamed if they don’t?  “Monitoring of benefit gained”.  This presupposes that the only possible outcome is that benefit will be gained.  What happens to any who don’t benefit?  Would treatment be monitored for possible negative effects, and adapted accordingly? 

This description of the type of services offered (at the Leeds Liaison Psychiatry Service)  again does not provide any details of how the treatment works, or data about the outcomes of such services:

The Leeds Liaison Psychiatry Service considers patients suitable if they have “persistent MUS”, significant and sustained loss of function, engage in “regular help-seeking, and are willing and able to attend regular outpatient appointments.”

They are then offered two treatment options…10 sessions of either treatment via the Hospital Mental Health Team, covering “engagement, shared understanding, goal agreement, core intervention, activating therapies and relapse management…” or Cognitive Behaviour Therapy.  “If sufficient progress has been made, the patient will be discharged.  Or the case will be taken to a multi-disciplinary (MDT) meeting for further review.  Clinical intervention/therapy only continues beyond 10 sessions if there is a clear clinical rationale and a clear motivation to engage.  Outcome measures are repeated, for both treatment options, at discharge.”

A clearly spelled out process with an end-point at 10 sessions.  We don’t know what causes MUS, but we have treatments which we know are effective within ten sessions.  If protocol has been followed, the treatment has been done correctly.  There is no suggestion that the effects will be monitored so that methods may be varied in response to the patients’ condition, or measured to ensure that the treatment offered is actually giving good outcomes for patients.

This report is notable for the absence of a convincing model, the rationale for treatment, the details of treatments, and any specific data, either in the form of case study examples or statistics regarding rates of improvement/recovery in patients who have experienced specific treatments.

In sum, the Guidance invites Commissioners to provide a very expensive set of services based on the presumption that if a set of symptoms does not yield to standard diagnostic tests, the patient must be suffering from a mental health problem.  It insists that prompt treatment of such patients with vaguely-defined treatments based on the bio-psychosocial model will save all the money that these services cost, because these effective treatments will presumably – not “cure” them - but “improve function”. 

The conditions listed include ME/CFS, Fibromyalgia, IBS and a range of others, which map almost exactly onto the list of conditions considered in the Institute of Medicine report on ME/CFS as possibly overlapping or co-morbid.  Presumably like ME/CFS itself, these are not regarded as ‘psychogenic’..

Should Commissioners really devote mental health funding to such a questionable endeavour?  Is there a way we could find out?

Reality Check

Is there a way we could test the promise that treatment of these disorders using the BPS model will “result in improved outcomes for patients and substantial cost-savings for the healthcare system”?

ME/CFS is listed as one of the conditions included in “medically unexplained symptoms”.

Specialist ME/CFS clinics run on the BPS  model, offering CBT and GET, have already been in existence for a number of years.[13]

If patient records, including pre-illness employment, medical condition at the beginning of treatment, medical condition at discharge, medical condition/employment status on follow-up are available (and it is reasonable to suppose that such records have been kept, and that the data would be available), these would provide a way to measure the potential “improved outcomes for patients and substantial cost-savings for the healthcare system”.

It should also be noted that very few of the existing specialist clinics offer domiciliary diagnostic, treatment, or support services.  Those already too ill to attend are therefore automatically excluded, as are those who deteriorate during treatment and become unable to continue.  Unless records include these patients, data provided by the services could be very misleading, especially if failure to attend and/or failure to continue to attend are misinterpreted as lack of motivation rather than a measure of illness severity.

Clearly, the maximum cost savings would occur when a patient stopped being a sick person and returned to being a tax-payer.  A degree of improvement allowing a partial return to economic activity would be a step in this direction.  Becoming well enough to minimize use of health services would save some money.  If a person were moderately ill and became incapacitated following treatment, as many have done after a programme of GET, this is clearly neither an “improved outcome” nor would result in “substantial cost-savings for the healthcare system”.

Either this information is available and can be used to predict the outcomes for the proposed services, or it is not available, in which case potential Commissioners should be asking why.

Spoiler-alert:  No patient involved in the PACE Trial returned to employment.

This report, then, is the ‘fight-back’ – a strategy by the psychiatric lobby to maintain that ME/CFS and related disorders are a mental health condition appropriately treated using the biopsychosocial model, and to attract funding for these activities.

If Commissioners act on this, much-needed funding for mental health services will be diverted into services providing inappropriate and potentially harmful treatments for a complex, chronic, multisystem disease, and related complex, multisystem disorders. 

Lack of a medical explanation for a set of symptoms does not automatically imply a psychiatric condition.  ‘Medically unexplained symptoms’ should be removed from the psychiatric lexicon, and this Guidance should be withdrawn.

References

  1. Joint Commissioning Panel for Mental Health. Guidance for commissioners of services for people with medically unexplained symptoms, 9 February 2017. www.jcpmh.info/resource/guidance-commissioners-services-people-medically-unexplained-symptoms/
  2. Monbiot, G, Invasion of the Entryists. The Guardian Higher Education. December 2003. www.theguardian.com/education/2003/dec/09/highereducation.uk2
  3. McEvedy, C.P. , Beard, A.W. Royal Free epidemic of 1955; a reconsideration. British Medical Journal1(5687):7-11. 3 January 1970.
  4. Ramsay, A.M. Myalgic Encephalomyelitis and Postviral Fatigue States, the Saga of Royal Free Disease.  Second. S.l.: The ME Association, 1988, Reprinted 2005.
  5. 1994 Report of the UK National Task Force on Chronic Fatigue Syndrome, Postviral Fatigue Syndrome and Myalgic Encephalomyelitis.  Report of the UK National Task Force on Chronic Fatigue Syndrome, Postviral Fatigue Syndrome and Myalgic Encephalomyelitis. 1994.
  6. Members of the Committee.  The Joint Report of the Royal Colleges of Physicians, Psychiatrists and General Practitioners on Chronic Fatigue Syndrome, October 1996/CR54. S.l.: Royal College of Physicians, 1996. Royal Commission.
  7. Nijs, J. et al, Fear of movement and avoidance behaviour toward physical activity in chronic-fatigue syndrome and fibromyalgia: state of the art and implications for clinical practice. Clinical Rheumatology 3 May 2013. http://www.ncbi.nim.nih.gov/pubmet/23639990
  8. Ramsay, A.M.  A Baffling Disease With A Tragic Aftermath, National Association for ME, 1986, http://www.name-us.org/Definitions Pages/DefRamsay.htm
  9. Acheson, A.D. The clinical syndrome variously called benign myalgic encephalomyelitis, Iceland Disease and epidemic Neuromyasthenia, The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Byron Hyde MD and Jay Goldstein, Eds, The Nightingale Foundation, 1992.
  10. Harvey, S.B., Wessely, S. Chronic fatigue syndrome: identifying zebras amongst the horses, Fig 1, BMC 7:58. doi 10.1186/1741-7015-7-58. 2009.
  11. White, P.D. et al, Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial.  The Lancet, 377(9768)823-36 March 5 2011. doi 10.1016/SO140-6736(11)60096-2 https://www.ncbi.nlm.nih.gov/pubmed/21334061,
  12. Faulkner G. Major breakthrough on PACE trial, Centre for Welfare Reform, 19 August 2016.   http://www.centreforwelfarereform.org/news/major-breaktn-pace-trial/00296.html
  13. ME Association. NHS Specialist Services throughout the UK – updated 29 June 2017.
    http://www.meassociation.org.uk/specialist-services-throughout-the-uk/
  14. ME Association.  Conclusions and Recommendations from the MEA’S CBT, GET and Pacing Report, Published in 2013.  http://www.meassociation.org.uk/wp-content/uploads/CONCLUSIONS-MEA-REPORT-2013.\docx
  15. Crowhurst, G, Severe ME, Stonebird, 2013  ISBN: 978-1-291-64516-3
  16. Mathees, A et al. A preliminary analysis of 'recovery' from chronic fatigue syndrome in the PACE trial using individual participant data, Virology (online) September 2016 http://www.virology.ws/wp-content/uploads/2016/09/preliminary-analysis.pdf
  17. Wessely, S, Death Threats to ME Researchers, Today, (Interviewer, Fielden, T.)  BBC Radio 4, 2 August 2011.
  18. The Nightingale Research Foundation.  The Nightingale Research Foundation Review of The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Goldstein, J,, Levine, P, Hyde, B.M, Editors.
  19. Williams, M, The Immunological Basis of ME/CFS: What is Already Known? Journal of Invest in ME 6 (1) 28-93. 2012
  20. Frances, A.J., DSM5 In Distress -Mislabelling Medical Illness as Mental Disorder. https://www.psychologytoday.com/blog/dsm5-in-distress/201212/mislabeling-medical-illness-mental-disorder
  21. Stone J, Functional symptoms in neurology, Neurology in Practice, 2009.9:179-189. https://doi:10.1136/jnnp.2009.177204.  
  22. Dimsdale, JE, Levenson, J, What’s Next for Somatic Symptom Disorder? American Journal of Psychiatry, (Online) 170 12:1393-1395 2013.  https://doi.org/10.1176/appi.ajp.2013.13050589
  23. Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Beyond myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, Institute of Medicine, Washington, D.C.; The National Academies Press, 2015.  ISBN-13:978-0-309-31689-7  https://www.ncbi.nlm.nih.gov/pubmed/25692122
  24. Independent Mental Health Taskforce to the NHS in England, The Five Year Forward View for Mental Health, 2016, https://www.england.nhs.uk/wp-content/uploads/2016/02/Mental-Health-Taskforce-FYFV-final.pdf
  25. Implementing the Five Year Forward View for Mental Health, July 2016.    https://www.england.nhs.uk/wp-content/uploads/2016/07/fyufv-mh.pdf

Comments:

  1. steve hawkins said..

    Thank you for taking the time to go through this report and produce this thorough critique Nancy.

    The joint panel report is so wrong and so frightening to anyone with any of these seriously crippling illnesses that it is hard to think of those who produced it as anything other than sadists.

    The biopsychosocial modellers have had their way for so long, that some of us have been tortured by them for half our lives, and already tried everything suggested and only succeeded in making ourselves more ill. I even went along with them to the point of being in a psychiatric unit for nearly four years, and that just ended with me being thrown out when I was no longer strong enough to stand up for more than a minute or two. What happens to people like me under this renewed onslaught of the same old childishly simplistic and long disproven quackery? We need proper in patient multidisciplinary *physical* diagnostic services if there is ever to be any chance of getting us diagnosed, treated, and back to work. This cult of CBT evangelists are actually doing everything in their power to deny people like me the right to access to proper health services. They've already taken over 35y as they've just been smugly watching it get worse while making snide remarks: now they are redoubling their efforts to make sure I go to my grave without ever finding out what is making it impossible for me to be in an upright position without getting into extreme physical distress.

    These people must not be allowed to throw any more lives away as they have done mine. I sincerely hope that this analysis gets the full attention that it deserves and that the charlatans and quacks behind the pseudoscience of CBT are at last seen for what they are.


  2. Dr Rodney Jones said..

    For the past 8 years, I have been researching outbreaks of something which could be described as an immune modifying agent. See http://www.hcaf.biz/2010/Publications_Full.pdf for a list of publications. At random I have met previously healthy people seemingly 'infected'. I am not a medical doctor, and the following suggestion has no supporting clinical trials. Based on a possible biochemical rationale the following can be tried (within a context of medical advice), Vitamin D, Allicin (available as AliMax), N-acetyl-cysteine (NAC) 600 mg and Pyrroloquinoline Quinone (PQQ) 20 mg. Do your own research. There may or may not be any link with ME/CFS.


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About Nancy Blake

Nancy Blake BA CQSW, has worked in mental health settings since 1971. She served as Chair of the ANLP PCS (now the NLPtCA), on a National Working Party developing postgraduate standards for Psychotherapy (NVQ Level 5), and contributed to the document which led to NLP being accepted as a therapeutic modality by the European Association for Psychotherapy.  She has presented workshops at UKCP Professional Conferences on an NLP approach to working with victims of abuse, and in psychoneuroimmunology.  Recovering from ME since 1986, she is the co-author, with Dr Leslie O Simpson, of the book Ramsay’s Disease (ME) about ME, as well as A Beginner's Guide to ME / CFS (ME/CFS Beginner's Guides). Both titles are available both in paperback and Kindle formats on Amazon. Nancy was previously enrolled at Lancaster University in a PhD doctoral program; her thesis topic was Conflicting Paradigms of ME/CFS and how the Psychiatric Paradigm creates its Influence in contrast to the Medical Model. She may be contacted via alternatives@alternatives.karoo.co.uk  http://nancyblakealternatives.com/ Her books are available to purchase at www.amazon.co.uk/Nancy-Blake-BA-CQSW/e/B0089NS0RK/ref=ntt_dp_epwbk_0

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