Severe ME

Severe ME in Britain by Greg Crowhurst

(May be Reposted)

Dominated by the overarching influence of the psychosocial model of the illness, which emphasises "beliefs, coping styles, and behaviours" , this "elephant in the room", according to Neil Abbot, Director of ME Research UK (2007) colours the perception of Myalgic Encephalomyelitis (ME) right across the board in the UK from the 2007 NICE Guideline, to the policy of government agencies such as the Department of Work and Pensions and NHS Plus, leading to wrongful assumptions such as :

Cognitive Behaviour Therapy (CBT) and Graded Exercise are an effective cure for ME.

that those unable or refusing to participate in inappropriate psychiatric "treatment" regimes or who are not getting better following them, are somehow inadequate and at fault.

or that people with ME do not have the right thought processes or the correct attitude to getting better/returning to work.

Severe ME patients are simply dismissed or abandoned without support (Hooper et al 2005), for there is no appropriate biomedical NHS treatment facility anywhere for patients in the UK.

A national survey, conducted by the author for the 25% Severe ME Group and presented at the Gibson Parliamentary Inquiry (2006) "presented shocking evidence of the abuse of severe ME patients at the hands of the UK "psychiatric lobby". Members reported being locked in secure psychiatric wards or AIDS units and their lack of response to "treatment" being taken as an indication of their misguided thinking". (Greg and Linda Crowhurst 2007)

Crawford, Aitken and McCagh (2008) recently found that UK nurses still respond more positively to patients with Multiple Sclerosis and Rheumatoid Arthritis than patients with ME/CFS, which they are more likely to wrongly view as a psychological disorder. Nurses also report low levels of training and confidence in their skills when working with patients who have ME/CFS.

Background

The disease, which can occur in both sporadic and epidemic forms (Jenkins 1991) has been described in the medical literature for about 70 years. Over 4,000 papers have been published, documenting the biomedical abnormalities found in ME/CFS (CDC 2006) There are an estimated 62, 500 people with severe ME/CFS in the UK receiving "seriously inadequate health care" according to the Chief Medical Officer (DH 2002).

Since 1969 ME/CFS has been classified as a neurological disorder by the World Health Organisation. ME/CFS was recognised as a specific disease entity by The Royal Society of Medicine in 1978 and as an organic disorder by the Department of Health in 1987 (Hansard 1987). ME is included in the National Service Framework (DH 2004) as a long-term neurological condition. The terms 'fatigue' and 'chronic fatigue' were not associated with this disease at all until the name was changed from ME to Chronic Fatigue Syndrome (CFS) in 1988 in the US . In 1988, following a spectacular increase in cases in the US, the term "chronic fatigue syndrome" (known as "CFS") was introduced and doctors were encouraged to lump together all cases of "chronic fatigue" of whatever origin and to regard them as one syndrome. The Fukuda criteria drawn up in 1994 by the United States centre for Disease Control and Prevention (CDC), has become internationally accepted. However the CDC criteria, were primarily intended for research purposes and not for clinical definition. Because the CDC emphasises fatigue as the sole compulsory criterion, it has attracted criticism for allowing disparate fatigue conditions, for example post-traumatic stress disorder, depression and conditions that improve with exercise to be diagnosed as ME; the CDC definition is increasingly viewed as being too broad and indistinct to be useful.

Few of the 18 members who drew up the CDC criteria had either looked at an epidemic of the illness (there have been over seventy around the world) or examined any patients with the illness. The three most experienced members of the board refused to sign the final document. With very few exceptions the remaining members never published on ME/CFS again.

A common misapprehension is to confuse ME with Chronic Fatigue and then treat them both as mental health conditions. ME/CFS, a neurological condition should not be confused with Chronic Fatigue. Chronic Fatigue is classified by the World Health Organisation in ICD-10 as F48 (a mental disorder), whereas ME/CFS is classified as an organic neurological disease under ICD code G93.3. Despite fatigue being seen in mental health disorders, it is important not to confuse ME as a mental health disorder. Hyde (2003), for example, found that less than 5% of ME/CFS sufferers "have any significant psychiatric illness. " There is no published evidence whatsoever, as opposed to opinion, that ME (as distinct from chronic fatigue) is a psychiatric disorder. (Williams 2004). Unlike somatisation disorder, M.E. is not ‘medically unexplained.’ M.E. is a multi-system disease with many organ and bodily systems affected, producing a myriad of symptoms [and] many aspects of the pathophysiology of the disease have, indeed, been medically explained in volumes of research. (ME Society of America) ME/CFS, the neurological condition, differs from the mental illness Chronic Fatigue in:

The epidemic characteristics

The known incubation period

The acute onset

The associated organ pathology, particularly cardiac.

Infrequent deaths with pathological central nervous system (CNS) changes.

Neurological signs in the acute and sometimes chronic phases.

The specific involvement of the autonomic nervous system.

The frequent subnormal patient temperature.

The fact that chronic fatigue is not an essential characteristic of the chronic phase of ME. (Hyde 2003)

Cheney, Bassett (2004) found that in dual chromatography analyses, many ME/ICD-CFS patients actually had more derangement of the brain, on a biochemical level, than Parkinson's or Alzheimer's patients.

ME/CFS is not "cured" by Cognitive Behavioural Therapy (CBT) and Graded Exercise (GET). CBT and GET are potentially harmful to anyone with neurological ME. The Chief Medical Officer (2002) has warned that exercise-based regimes advocated for less severely affected patients tend not to have been studied among those most severely affected. Cycles of severe relapse are common in ME as are further symptoms developing over time. "Substantial improvement is uncommon and is less than 6%" (Anderson et al. 2004); and, "Full recovery... is rare" (Cairns & Hotopf, 2005). The aetiology and pathogenesis of ME/CFS are not fully understood (Crowhurst 2005) Although there is as yet no single test which can diagnose the condition, there is, as Bassett (2004) explains, "an abundance of research which shows that it is an organic illness which can have profound effects on many bodily systems and many aspects of the pathophysiology of the disease have, indeed, been medically explained in volumes of research articles.

The Experience of Severe ME/CFS

It is not 'fatigue' or 'tiredness' that is the one essential characteristic of ME/CFS but central nervous system (CNS) dysfunction (Bassett 2006). Bell (1995) describes the word "fatigue" as: 'A very inappropriate term for what patients experience. It's not really fatigue at all, which is defined as a normal recovery state from exertion and that is precisely what does NOT happen in this illness". Everyday life for the severe ME sufferer is a perpetual struggle. As Owen (2007) points out the most severely affected may not be able to speak, eat, swallow, open their bowels. They may not be able to sit up or move themselves, they may be too exhausted to dress or wash . The sound of running water may be too much for them to bear, they may not be able to open their mouth to brush their teeth. Crowhurst L. (2007) describes how : "Having severe ME is unimaginable; the experience is so different, intense and unremitting than anything I have ever experienced before. I am never unaware of the range of symptoms that rage through my body, and are dominated by intense never ending pain in every millimetre of my skin and muscles, over and throughout my whole body; head, shoulders, back, front, arms, legs, hands, feet, toes, fingers, eye lids, scalp, the soles of my feet, the tip of my nose, my eyebrows even. They all burn, throb, tingle, itch, and hurt in ways indescribably unbearable, along with other unusual sensations"

Politics of ME in the UK.

The ME community in the UK has for many years suffered, perhaps uniquely, from the corporate takeover and denial of their illness, for the Medical Insurance Industry, since the mid-1980's has lobbied hard to take over the UK Health market, under the auspices of a prevailing market fundamentalism.

Since 1999, business–friendly NHS initiatives like : Payment by Results ; Choose and Book; Independent Sector Treatment Centres, Integrated Clinical Assessment and Treatment Services ; tenders for the commissioning function of Primary Care Trusts; Alternative Provider of Medical Services ; Unbundling, Private Finance Initiatives and Practice-based commissioning; have led to a great fear that commercialism, competition, patronage and fear are undermining the NHS.

New Labour’s Welfare Reform Act, based upon an understanding that the sick and disabled can be talked "into believing they can lead normal lives", was passed in May 2007. Features of the Reform are familiar from other policy areas, argues Ravetz (2008), in that they involve the demonisation of a needy or vulnerable group;"

As far as people with ME are concerned "it cannot be denied that powerful forces are at work to deny the validity of ME/CFS."(Williams 2008), by giving ME a false psychogenic attribution, even though there is not a single shred of evidence that ME is a psychiatric, behavioural condition.

According to Professor Pall (2007), psychogenic advocates typically ignore "crucial genetic, physiological and biochemical evidence inconsistent with their views, they substitute emotional terminology for sound argument. They often use flawed logic. They rarely make any clear testable predictions that may be used to distinguish their views from those of physiological explanations, a cardinal sin in science."

In what other neurological disease would psychiatric interventions, designed to convince the patient there is nothing wrong with them, be advocated as first-line/core treatments?

Williams (2008) states that it is " irrefutable that certain UK psychiatrists, all deeply involved with the medical insurance industry, have worked unceasingly to deny the nature of ME/CFS."; the results have been devastating, as one patient, surveyed by the author (Crowhurst 2007) explains :

"It is soul destroying to have a World Health Organization recognized illness that neurologists are not interested in even exploring or validating. The neurological symptoms can be extremely frightening and severe . I don't have the energy or the physical ability to cope with being insulted and demoralised on top of being dismissed, when I have extreme paralysis, spasms, all over body numbness, facial palsy - things not to be dismissed lightly and not to be left to get on with by yourself. Abandoned and left to get on with it, living in constant fear of misunderstanding, medical abuse and withdrawal of benefits; this summarizes the current state of affairs here in the UK, for severe ME sufferers.

References

Abbot N (2007) Research Challenges in ME/CFS, Interaction, December 2007

Bassett J (2004) updated July 2005. What is ME/ICD-CFS? A Medical and Political Overview. http://www.ahummingbirdsguide.com/whatisme.htm

Carruthers et al (2003) "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols" which appeared in the Journal of Chronic Fatigue Syndrome, Vol. 11(1) 2003, pp. 7-115, )

Crawford J, Aitken S, McCagh J (2008) A comparison of nurses attitudes towards people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, Multiple Sclerosis and Rheumatoid Arthritis. Liverpool Hope University.. British Psychological Society Conference I, Dublin 2-4th April 2008. Book of Abstracts ; Poster Presentation 0o7,( page 227) : http://www.bps.org.uk/downloadfile.cfm?fileuuid=294D335D-1143-DFD0-7E3E-511853853E27&ext=pdf  

Crowhurst G (2005) Supporting People with Severe myalgic encephalomyelitis, Nursing Standard, 19, 21, 38-43

Crowhurst G, Crowhurst L A Critical Response to the Inquiry into the Status of CFS/ME and Research into Causes and Treatment by the Group on Scientific Research into Myalgic Encephalomyelitis (ME) : The ‘Gibson Report’ Greg & Linda Crowhurst February 1st 2007 http://www.25megroup.org/Campaigning/Gibson%20Inquiry%20Information/A%20Critical%20Response%20to%20the%20Inquiry%20into%20the%20Status%20of%20CFS.doc.

Crowhurst G (2007) A Survey of Severe ME Patients in Norfolk and Suffolk www.metrainingco.org.uk Department of Health (2002) Annexes to the Report of the Chief Medical Officer of an Independent Working Group, London, The Stationary Office)

Hooper, M. & Montague S 2001 Concerns about the forthcoming UK Chief medical officer's report on Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) notably the intention to advise clinicians that only limited investigations are necessary http://www.meactionuk.org.uk/CommentsonadvicegivenbyamemberoftheKeyGroup.htm  

Hooper, Williams (2006) ) A synopsis for the UK Parliamentary Enquiry 18th Aug 2005, http://www.meactionuk.org.uk/ME-WHYNOACCOUNTABILITY.htm )

Hyde B (2003) The Complexities of Diagnosis, Handbook of Chronic Fatigue Syndrome, John Wiley & Sons Inc

Marshall E et al (2001) What is ME/What is CFS? Information for Clinicians and Lawyers.www.meactionul.org/WhatIsMEWhatIsCFS.htm) The ME Society of America website, [Online], Available: http://www.cfids-cab.org/MESA/framework.html  

Pall ML (2007) Explaining Unexplained Illnesses, Disease Paradigm for Chronic fatigue Syndrome, Multiple Chemical sensitivity, Fibromyalgia, Post-traumatic Stress Disorder, Gulf War Syndrome and Others" Harrington Park Press, New York and London pp189/90.

Ravetz A (2008) Is Labour abolishing illness? New Statesman, 01 May 2008 www.newstatesman.com/politics/2008/05/work-benefit-claimants-reform  

Williams 2008 More Zombiefication of ME/CFS? http://www.meactionuk.org.uk/MoreZombieficationofMECFS.htm

* * *

The first doctor I saw in 1987 dismissed me as a hypochondriac because I was dragged to the ER in response to my husband recognizing my symptoms in a magazine article (I hadn’t read it; anyway, how could an article produce symptoms months before it was published?).

The doctor who made the diagnosis in 1988 listened to me complain (as Linda Crowhurst does half a world away) "even my hair hurts", and knew that I could not be inventing that symptom: it had not been published yet. If I knew to say that, then he knew I was truly experiencing the symptoms and not quoting from a magazine article.

No matter what the detractors may say, this is not psychiatric or hypochondria, immense amounts of research have shown viral damage and neurological abnormalities that cannot be imagined into being. Anyone who continues to maintain that we’re simply lazy or crazy is themselves delusional; too closed-minded to consider any evidence that they are wrong. No trained counselor, psychiatrist or psychologist has ever found any sign of mental illness in me: they all felt my symptoms were consistent with a physical illness like the flu. I worked against the odds for years after diagnosis, so I’m not too lazy to work. I’m simply at this point too sick to be employable, probably because I struggled so hard to keep working.