10 GOOD REASONS why ME should not be labelled a Functional Somatic Syndrome

10 GOOD REASONS why ME should not be labelled a Functional Somatic Syndrome

Stonebird

As I outline in Straight-Jacketed By Empty Air, psychiatry has spent the last 30 years spreading the untruth that Myalgic Encephalomyelitis (ME), a WHO G93.10.3 classified neurological disease, is a mental health disorder.

This it has achieved by:

1.A failure to distinguish between mental health disorders and physical diseases
2.A deliberate focus on fatigue rather than system dysfunction
3.Blatant research bias
4.Suppression and deliberate exclusion of biomedical evidence
5.Asserting that ME is nothing more than an “aberrant illness belief”
6.Denying the significant symptoms and signs, especially cardiovascular, neurological and immunological
7.By assuming an influence and functioning in areas of medicine in which they have no expertise such as immunology, vascular biology and muscle pathology (cf. Hooper 2010)
8.Using the name ME but meaning something completely different by it to its original usage, by conflating Myalgic Encephalomyelitis with mental health fatigue and other conditions.
9.By creating the Oxford Criteria, an extremely vague set of symptom criteria, now discredited yet still in use, which identifies no one specifically with ME. The National Institute of Health ( USA) concluded in 2015 that the criteria the psychiatrists use, the Oxford Criteria are flawed and should not be used anymore.

The result is the gross medical neglect and mismanagement of tens of thousands of people with a serious physical illness and even deaths, trapped in a system that uses the name ME but identifies it loosely and denies its true nature, treating something completely other than what it actually is.

Etiology, the search for origin and cause of disease, has played an insignificant part in psychiatry’s diagnosis of ME as a somatic symptom disorder, instead, using a bewildering profusion of labels such as Medically Unexplained Symptoms (MUS), Bodily Distress Syndrome BDS or Functional Neurological Disorder (FND) (cf. Timimi 2011) to quite wrongly define it. The underlying hypotheses is one of an abnormal stress response WITHOUT corresponding abnormalities in specific peripheral organ systems. (Fink et al 2007)

Whatever label is used, the diagnosis is dependent purely on the knowledge, integrity or personal bias of the practitioner, which given psychiatry's track record in ME is a terrifying prospect.

The WHO Schedules for Clinical Assessment in Neuropsychiatry - Glossary version 2.1 states very clearly, however, that if ” the examiner considers that there is, or probably is, a physical explanation for all the clinically significant symptoms described.... skip out of the Section altogether. The cut-off point is always passed if there is any doubt.”

So why is anyone with ME being represented as MUS in the first place? It beggars belief.

Here , then , are 10 good reasons why ME should not be labelled a Functional Somatic Syndrome and psychiatry should not be involved in ME:

1. There is clear evidence that ME is not the same as depression or any other psychiatric disorder. It is wrong to label people with Severe ME, who have profound multi-system dysfunction as having a mental health disorder.In 2015, the influential USA Institute of Medicine, stressed that ME is a medical, not a psychiatric or psychological illness.(IOM 2015)

2. Neuroinflammation has been found to be widespread in the brain areas of the patients with ME and is associated with the severity of their symptoms, (Nakatomi 2018) while psychiatry claims inflammation to be a sign of “sickness behaviour “, there is clear evidence that sickness behaviour and ME are two different conditions. (Morris et al 2013)

Myalgic Encephalomyelitis (ME) is listed in the International Classification of Diseases (ICD), chapter 6, under Disorders of Brain at ICD-10 G 93.3. It is not classified as a mental health disorder.

Following publication of the International Consensus Criteria in 2011, the Consensus Panel, a group of doctors with over 500 collective years experience of studying and treating more than 50 000 people with ME, issued a one stop, user-friendly reference in 2012 known as the Primer (Carruthers et al 2012), that specifically targets primary care physicians and specialists in internal medicine. It outlines many underlying biological abnormalities that are present more often in patients with ME.

3. The misrepresentation that there is no known medical pathology in ME, is the foundation of a diagnosis of MUS /BDS/FND. However, the burden of proof is always upon the examiner to show that there is no physical explanation for all the clinically significant symptoms. If they cannot prove it, then MUS /BDS/FND is still no better than specious speculation.

4. There are over 9000 articles in peer-reviewed medical journals showing frank biological pathology in ME. Evidence of ME as a complex chronic physical illness has been growing for decades; there is now irrefutable evidence of a complex multi-system illness with severe inflammatory, neurological, immune, endocrine and cardiovascular dysfunction. (Boulton 2013)

5. Psychiatric disorders, like MUS /BDS/FND, are not scientifically demonstrated medical diseases, despite their efforts to make it so. There are no lab tests, brain scans, X-rays or chemical imbalance tests that can verify any mental disorder.

This in effect makes the diagnosis of MUS a fantasy or an unfounded belief, nothing more. That in itself should bring into question the validity of MUS /BDS/FND, yet still more worrying is the jump that psychiatry makes with MUS /BDS/FND trying to assert that a listed WHO physical disease, is instead a mental health condition without any justification or proof, only hubris and arrogant assertion.

6. There is no logical, methodological case for MUS /BDS/FND apart from personal opinion and presumption. The so-called "biopsychosocial model", which underpins MUS /BDS/FND is a " prime example of assumption and opinion-based medicine at a time when medicine should be evidence-based", (Vink 2017).

7. A diagnosis of MUS /BDS/FND seems to ignore all the studies challenging the effectiveness of the psychosocial approach, such as the PACE Trial (Tuller 2015), the largest Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET) trial for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) conducted thus far, which has dominated and influenced policy, however recently it has been exposed as a failure, there was no “recovery” and up to 96% of participants may have had their health adversely affected . (Vink 2017).

8. Many physical diseases have been linked to selected channelopathies including diabetes mellitus, dilated cardiomyopathy and cystic fibrosis. (Phoenix Rising 2012) Every ME case definition concludes that Post- Exertional Malaise is an essential feature of ME; a small but compelling literature, according to Jason (2015), shows “ that PEM may involve channelopathies”. Acheson stated in 1959 : “broadly speaking, the epidemic cases have fallen into two groups: patients with definite localised muscular paresis, and those without.” (Acheson 1959); from our long experience, we believe that it is likely that a channelopathy, causing flaccid muscle paralysis, weakness and fatigue, may underpin ME. (Crowhurst and Crowhurst 2017)

9. The question of what a Functional Somatic Syndrome is, has never explicitly been addressed or answered. The adding of the term "function" to the term "somatic" leads to the systematic denial of the physical causes of ME; this is a very dangerous game to be playing.

As Dr Komaroff argues:"Although we are a long way from identifying the precise pathophysiology of these illnesses, there is considerable evidence that they have an underlying biologic basis. "(Komaroff 2004)

10.A psychosomatic interpretation of ME creates a chicken and egg situation where you have to have the tests to prove you are ill, but the psychiatrists have denied you those tests, so you will not have the proof to prove you are ill. Yet wanting to have the tests or being concerned about your health, because of your symptom severity, is seen as "maladaptive thinking" and proof of MUS /BDS/FND; in that sense a diagnosis of MUS /BDS/FND, sets up a vicious self-fulfilling circle, endangering the lives of people with ME, especially the most severely affected.

The only thing that will keep patients with ME safe are biomedical tests that will prove there is physical dysfunction and accurate biomedical interpretation. Yet this is currently denied the vast majority of patients with neurological ME or simply not available at all.

The last thing anyone with Myalgic Encephalomyelitis needs is a mental health professional, with a psychosocial agenda, determining their treatment or being involved in their diagnosis or ongoing care plan.

It is one thing psychiatry offering support to those suffering from an incurable illness, which would be an appropriate intervention, but it is totally something else to deny a physical disease process, proscribe tests that might illuminate the dysfunction and misrepresent it as a mental health issue.

One way lies integrity with patient health at the centre, the other is unclear as to its meaning and is certainly not in patient’s interests.

(c) Greg Crowhurst February 2018

References
Acheson E.D.(1959) The Clinical Syndrome Variously Called Benign Myalgic En-cephalomyelitis, Iceland Disease and Epidemic Neuromyasthenia http://www.name-us.org/…/DefinitionsArticles/Acheson1959.pdf

Boulton N(2013) Reflections on ‘Voices from the Shadows’ after reading ‘Principlesof Social Change’ by Professor Leonard Jason. Natalie Boulton August 2013, in "Severe ME, featuring justice for Karina Hansen, Stonebird

Carruthers B et al (2012) Myalgic Encephalomyelitis - Adult & Paediatric International Consensus Primer for Medical Practioners International Consensus Panel
http://www.hetalternatief.org/ICC primer 2012.pdf

Crowhurst G&L (2017)Channelopathy : an important issue for those with Myalgic Encephalomyelitis.http://stonebird.co.uk/channelopathy/paralysis.htm

Hooper M (2010) Magical Medicine
http://www.meactionuk.org.uk/magical-medicine.pd

Fink P et al (2007) Symptoms and Syndromes of Bodily Distress: An Exploratory Study of 978 Internal Medical, Neurological, and Primary Care Patients Psychosomatic Medicine 69:30 –39 (2007)

Institute of Medicine(2015) Beyond Myalgic Encephalomyelitis/Chronic Fatigue SyndromeRedefining an Illness https://www.ncbi.nlm.nih.gov/books/NBK274235/

Komaroff A (2004) book review: Functional Somatic Syndromes N Engl J Med 2004; 351:2777-2778, Dec 23, 2004. Book Reviews http://www.prohealth.com/me-cfs/blog/boardDetail.cfm…

Morris et al. (2013) A narrative review on the similarities and dissimilarities between myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and sickness behavior BMC Medicine 2013, 11:64 http://www.biomedcentral.com/1741-7015/11/64

Nakatomi Y (2018) [Neuroinflammation in the Brain of Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome].Brain Nerve. 2018 Jan;70(1):19-25. doi: 10.11477/mf.1416200945.

Nørgaard M(2014) Charlotte lider af kronisk træthedssyndrom: Man bliver desperat, når man bliver erklæret psykisk syg http://ekstrabladet.dk/ekstra/samfund/article2242682.ece

Pileki, B.C., Clegg, J.W., & McKay, D. (2011). The Influence of Corporate and Political Interests on Models of Illness in the Evolution of the DSM. European Psychiatry, Vol. 26, Issue 3, pp.194-200.

Timimi S (2011) Campaign to Abolish Psychiatric diagnostic Systems such as ICD and DSM (CAPSID) http://www.criticalpsychiatry.net/…/up…/2011/05/CAPSID11.pdf

Tuller D (2015) TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study http://www.virology.ws/2015/10/21/trial-by-error-i/

Vink M (2017) Assessment of Individual PACE Trial Data: in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Cognitive Behavioral and Graded Exercise Therapy are Ineffective, Do Not Lead to Actual Recovery and Negative Outcomes may be Higher than Reported. J Neurol Neurobiol 3(1): doi http://dx.doi.org/10.16966/2379-7150.136