ME : The physical reality

ME is classified by the World Health Organisation as a neurological disorder [ICD-10 G93.3]. It is usually virally triggered, and has a wide range of symptoms. One of the hallmarks of the condition is debility after mental or physical exertion. In it's severe form, it is extremely disabling, with patients rendered bedbound, often unable to tolerate noise or light...

There are an estimated 200,000 ME sufferers in the UK. 25% of them are severely disabled and virtually housebound or bedbound by the condition, yet some of them never see a doctor. Some die of unexplained causes, organ failure or other complications. Others kill themselves because of the unbearable physical pain and anguish caused by the condition. Few fully recover.

The Canadian Expert Consensus Panel published a clinical case definition for ME/CFS. This can be viewed on the following website - http://www.cfids-cab.org/MESA/ccpc.html.   It says that in order to be diagnosed with ME/CFS, a patient must become ill after exercise and also have neurological, neurocognitive, neuroendocrine, dysautonomic, and immune manifestations.   In short, symptoms other than fatigue must be present for a patient to meet the criteria.

In Britain, unfortunately, patients are still accused by doctors of malingering, or imagining the illness, which causes enormous distress to the victims of this cruel disease. They have been calling for years for proper scientific tests to explore the causes, and help them to recover.

The Psychosocial Model of ME

In spite it's international neurological classification [ICD-10 G93.3], ME is misunderstood in Britain because of the influence of certain very prominent psychiatrists and psychologists.

In studies and practice, they mix physically ill ME patients with others who have psychiatric disorders, but not ME, and call the whole package of illnesses "chronic fatigue syndrome". The reasons for doing this have been clearly documented :

"The exclusion of persons (with psychiatric disorders) would substantially hinder efforts to clarify the role that psychiatric disorders have in fatiguing illness. We dropped all physical signs from our inclusion criteria....." (The Chronic Fatigue Syndrome: A Comprehensive Approach to its Definition and Study. K.Fukuda, S.Straus, M Sharpe et al Ann Int Med 1994:121:12:953-959 1994)

This definition of chronic fatigue syndrome is called "the OxfordCriteria"

Articles and papers were written for doctors, insurers etc..  These undermined the validity of known diagnostic markers, such as viral trigger, etc.,

" (the term myalgic encephalomyelitis) has been used to define a supposedly specific disease associated with viral infection. Despite this, the existence of ME as a specific syndrome remains unestablished. Use of the term is best avoided...." "The label of CFS avoids the connotations of pseudo-disease diagnoses such as ME.. " (Chronic fatigue syndrome and occupational health. A Mountstephen and M Sharpe Occup Med 1997:47:4:217-227 1997)

 and attributed the condition to psychological factors..:

" Chronic fatigue may be better understood by focusing on perpetuating factors and the way in which they interact in self-perpetuating vicious circles of fatigue, behaviour, beliefs and disability. The perpetuating factors include inactivity, illness beliefs and fear about symptoms, symptom focusing, and emotional state. (Chronic fatigue syndrome: an update. Anthony J Cleare, Simon C Wessely. Update 1996:14 August:61)

They also advocated that medical investigations should be avoided :

"referral to 'specialists' should be avoided as they can entrench illness behaviour (Chronic fatigue syndrome and occupational health. A Mountstephen & M Sharpe Occup Med 1997:47:4:217-227 1997)

"the use of extensive laboratory investigation may be psychologically harmful to the patient by reinforcing their beliefs about serious physical disease. (Psychiatric management of PVFS. M Sharpe. British Medical Bulletin 1991:47:4: 989-1005 1991)

They disapproved of patients' organisations making medical research information available to members :

"Such information may have a considerable and often unhelpful influence on patient attributions of illness." (Chronic fatigue, chronic fatigue syndrome, & fibromyalgia. Wessely S and Sharpe M. In: Treatment of Functional Somatic Symptoms. Ed: Mayou R, Bass C and Sharpe M. (chapter 16): OUP 1995)

They urge that CBT should be used to encourage the patients to think and behave differently...

"Cognitive behaviour therapy offers patients a new way to think about their illness. .... patients' beliefs about the illness lead to avoidance of activity and thus to chronic disability (Cognitive Behaviour Therapy. Michael Sharpe. A Research Portfolio on Chronic Fatigue. Ed: Robin Fox; published by The Royal Society of Medicine for The Linbury Trust, 1998)

Few patients who are suffering from a severe form of the condition benefit from CBT or GET. The patients' belief's that they are genuinely ill are blamed for continuing disability.

 "The clinical problem we address is the assessment and management of the patient with a belief that he / she has a fatiguing illness such as CFS, chronic fatigue and immune deficiency syndrome (CFIDS). The patients who cause the greatest clinical difficulty are those with both severe symptoms and strong beliefs. The majority of patients believe that their symptoms are the result of an organic disease process. Many doctors believe the converse. ( Chronic Fatigue Syndrome: A Practical Guide to Assessment and Management Sharpe M. Wessely S et al Gen Hosp Psychiatry 1997:19:3:185-199)

Where people are so ill as to require care, the carer's attitudes are sometimes blamed.

"Psychosocial factors may maintain disability. Family members may reinforce both beliefs and avoidance. We suggest that the clinical assessment should consider mood, beliefs, avoidance of inactivity and the role of the family". (Mania and recovery from chronic fatigue syndrome. MC Sharpe, BA Johnson. JRSM 1991:84:51-52)

They even undermined doctors who believed their patients.

"Perpetuating factors (include) reinforcement of sick role by mother and doctor.." (Chronic Fatigue Syndrome: A Practical Guide to Assessment and Management Sharpe M. Wessely S et al Gen Hosp Psychiatry 1997:19:3:185-199)

There were even suggestions that there are advantages to being seen as sick, because the patient would then gain benefits, sympathy etc.

"Validation is needed from the doctor. Once that is granted, the patient may assume the privileges of the sick role (sympathy, time off work, benefits etc)" (Chronic fatigue syndrome: current issues. Wessely S. Reviews in Medical Microbiology 1992:3:211-216).

"First, it allows them to negotiate reduced demands and increased care from family, friends and employer.... In short, it admits them to a bona fide 'sick role'. Second, it may open the way for practical help in terms of financial and other benefits from government, employers and insurers (Doctors' Diagnoses and Patients' Perceptions: Lessons from Chronic Fatigue Syndrome EDITORIAL. Michael Sharpe. Gen Hosp Psychiat 1998:20:335-338)

The article in the MESH Spring newsletter creates a supportive impression

"..I personally support the increased funding of high quality research into the biology of CFS and ME. (The MRC PACE Trial : The Background. MESH Newsletter Issue 47 Spring 2004 M Sharpe)

However, Professor Sharpe has elaborated on his views in an article for a UK pensions provider:

"Recent research.. has started to identify altered brain functioning in patients who have functional syndromes (as well as in those with depression and anxiety). This does not mean the patients have brain disease, but...is merely evidence of mind-brain identity... these symptoms are not purely psychological phenomena... they have a biological reality, albeit a potentially reversible one. (Functional Symptoms and Syndromes : Recent Developments", 2002. M. Sharpe)

The full article is available to read at : http://www.unum.co.uk/downloads/CMOReport.PDF    It gives Unum - Britain's largest medical insurance provider - easily downloadable grounds for refusing medical retirement to people with ME who are unfit to work.   If patients are unfit to appeal at court and tribunal hearings, they have to rely on the state to provide care and living costs. Current UK costs are estimated at around 3.5 billion pounds per annum.

The psychosocial model of ME is erroneous, illogical, and deeply offensive. 

a.. It has caused misery and suffering to thousands of people with ME throughout Britain.
b.. It has stopped investigations into the illness, and thus hampered scientific progress towards a better understanding of the condition.
c.. It has led to children being refused home education, and sometimes even forcibly removed from homes, because their parents are suspected of making them ill (Munschausen's Syndrome by Proxy).
d.. It has led to wide-spread derision and abuse of children and adults with ME by medical personnel.
e.. Patients have often been denied a diagnosis, care and appropriate advice. In many cases, they have been given inappropriate advice or therapies - like GET and CBT - which made them worse.

 Research findings from across the globe prove that patients with ME are physically sick.   Details of some biochemical research findings into physiological issues can be viewed on the severe ME group website : http://www.25megroup.org or  http://www.the-website.co.uk/ME_Group

PACE Trials

Two therapies - GET and CBT- will be compared with "adaptive pacing" and usual medical care (virtually none).

Graded Exercise Therapy (GET) is known to be harmful.  The 2002 CMO's Working Group Report on CFS/ME highlights the controversy surrounding GET. In one trial of GET, a third of patients dropped out because of their condition worsening.  The Severely Affected ME Analysis Report (2004) by the 25% ME Group, states that 39% of members have used GET. Of those, 82% say that it made them worse. Some were not severely affected before GET.

Cognitive Behaviour Therapy (CBT) is a psychological therapy which aims to challenge unhelpful thought patterns.  The CBT approach for ME/CFS is based on a theory that the illness is being maintained by psychological and behavioural factors, including "the belief that one has an illness"; "illness behaviour"; "symptom focussing" etc.. CBT aims to challenge those "beliefs" and convince the patient that the symptoms are due to "misinterpretation of bodily sensations"; deconditioning, etc. This causes great distress and anger, and can lead to ME patients over-exerting themselves, causing relapse.   A survey of around 2000 patients recorded in the 2002 report to the Chief Medical Officer, found that 7% of respondents found CBT 'helpful', 26% said it made them 'worse' and 67% reported 'no change'.

The PACE trials  ("RCT of CBT, graded exercise, and pacing versus usual medical care for the chronic fatigue syndrome") are scientifically unsound, and will not cater for people with ME.  The use of the Oxford Criteria of chronic fatigue syndrome will mean that some [most] of those patients will NOT fit the accepted internationally recognised criterion for ME/CFS.

The evidence from the PACE trials will be used to decide on future treatments and benefits provision for people with ME. Some people have already been deprived of benefits and pensions if they have not participated in this type of treatment.