The misrepresentation of Myalgic Encephalomyelitis in nursing.

Re : Roberts D (2016) Diagnosing and managing chronic fatigue syndrome Nursing in Practice 89 http://www.nursinginpractice.com/article/diagnosing-and-managing-chronic-fatigue-syndrome

Every nurse has a duty to speak up about wrong practice, or the potential to do harm, I have grave concerns over the serious errors and the misrepresentation of Myalgic Encephalomyelitis (ME) contained in the article "Diagnosing and managing chronic fatigue syndrome".

Last year I was awarded third place in the BJN Nurse of the Year Award, for my contribution to and advocacy for Severe ME. My article “Supporting people with severe myalgic encephalomyelitis” (Crowhurst 2005) is referenced by NICE. In 2006 I represented people with Severe ME in parliament at the Gibson Inquiry (Hooper 2006). I have conducted a national (Crowhurst 2005) and local survey of Severe ME. (Crowhurst 2007) I am the author of "Severe ME, featuring justice for Karina Hansen" (Crowhurst 2013) and "Severe ME, Notes for Carers"(Crowhurst 2015). I have qualifications in Nursing, Counselling , Education and an MA. I have been caring for my wife, who has Very Severe ME, for well over two decades.

1. Wrong application of CFS to ME 

The author asserts that "Chronic fatigue syndrome (CFS) " is also known as myalgic encephalomyelitis (ME)"; that is not necessarily true. Precisely what symptoms characterise chronic fatigue syndrome (CFS) is a matter of dispute, as there are many different definitions in use ( Goldin 2016). “ME/CFS” is an umbrella term, subject to many different interpretations, incorporating a wide range of meaning and poorly identified conditions. Hooper (2010) points out : "Amorphous definitions and diagnostic symptom criteria have contaminated study cohorts and corrupted research data ." Nurses need to be aware that this leads to a confusion over who has been studied in any particular research, making any treatment recommendation potentially unsafe; because of the lack of clarity of whom it might have helped or not.

Myalgic Encephalomyeltis is formally classified as a neurological disorder in the International Classification of Diseases (ICD10:G 93.3; WHO 1992). The  tone of Roberts' article, however, with its emphasis upon personality factors, depression, anxiety and behaviour change seems closer to the PACE Trial’s (which the author refers to) definition of “Chronic Fatigue Syndrome”, defined simply as a principal complaint of fatigue that is disabling, having lasted six months, with no alternative medical explanation (Goldin 2016). This is not a definition of Myalgic Encephalomyelitis.

“CFS”, according to the WHO  is only acknowledged as a colloquial, not an absolute term to represent ME. The ICD separately classifies fatigue syndromes as a behavioural (psychiatric) disorder (ICD 10:F 48).

What the PACE Trial  refers to “CFS/ME” is a condition of “medically unexplained” fatigue that is perpetuated by inappropriate illness beliefs, pervasive inactivity, current membership of a self-help group and being in receipt of disability benefits (PACE Trial Identifier, section 3.9) (Hooper 2010).

ME, which the PACE Trial,  the largest treatment trial in the history of chronic fatigue syndrome,  specifically did not study (Hooper 2011) , is a complex multisystemic metabolic-inflammatory disorder, involving profound dysregulation of the central nervous system , immune system dysfunction, cardiovascular abnormalities, autonomic nervous system dysfunction.

The author's assertion that an "underlying degenerative pathology has not been identified." may be true in the context of "CFS/ME" as defined above, but is wildly untrue in the context of neurological ME.

Decades of denial, by a very powerful psychiatric lobby underpin the author’s observation that the World Health Organization’s classification of ME as a neurological illness is not " universally accepted" ; specifically, I imagine, this means the UK psychiatric lobby ( and all those they have influenced), who have been reprimanded by the World Health Organisation (WHO) for attempting to subvert the ICD definition of Myalgic Encephalomyelitis . ( Marshall E, Williams M 2005)

It was the documented biochemical, metabolic, vascular, neurological and muscle abnormalities in ME patients that led to the WHO classification of ME as a neurological illness. As Carruthers et al (2012) , who explicitly call for the separation of ME from CFS points out, in the most accurate and up to date clinical criteria available, the International Consensus Criteria : “Myalgic encephalomyelitis, a name that originated in the 1950s, is the most accurate and appropriate name because it reflects the underlying multi-system pathophysiology of the disease”.

The author's extraordinary claim that "it is the GP and primary care nurses who can determine diagnosis for the majority of cases"; surely shows how she cannot possibly be referring to ME, the tortuous neurological disease, requiring expert assessment and diagnosis. Expert consultant-level input, almost entirely lacking in the UK, is required diagnose a complex neurological disease like Myalgic Encephalomyelitis.

It is very likely that many patients with a generalised CFS label have simply not been adequately investigated or tested and may have curable illnesses or mental health Chronic Fatigue, not Myalgic Encephalomyelitis, at all. Unfortunately the author never actually defines what she means by "CFS", what criteria she is using .

The author writes that “CFS remains a diagnosis of exclusion without a clinical diagnostic test, relying on the recording of significant clinical features and standard investigations, as outlined by NICE.”, however as patient advocate Sally Burch points out in an excellent presentation, the Director of NICE admits that the “Guideline fails to address the real issues in ME/CFS”.(Burch 2015) 

Almost all the UK ME Charities condemned the NICE Guideline as unfit for purpose: such was the out- rage and disgust throughout the ME community at the way that NICE had deliberately ignored so much biomedical evidence about ME.

Over twenty renowned ME experts later provided Statements to the Court (Judicial Review of the NICE Guidelines) challenging the validity of the research that NICE used for its Clinical Guidelines. NICE relied on a handful of low quality Randomised Controlled Trials that were methodologically flawed.

 2. Wrong focus on behavioural change

 Following an extensive review of the literature, the American Institute of Medicine (IOM) concluded last year that myalgic encephalomyelitis is a serious, debilitating conditions that affect millions of people in the United States and around the world; that it is a medical - not a psychiatric or psychological - illness without a known cause or effective treatment which can cause significant impairment and disability rendering 25% of patients homebound or bedridden yet the term chronic fatigue syndrome can result in trivialisation and stigmatisation of this complex, multisystem, and often devastating disorder. (Vink 2016)

Many world-class clinicians recognise that ME is either an infectious disease or an auto-immune disease as a direct result of infectious insult and recognise ME as a complex neuro-immune disorder accompanied by chronic low-grade inflammation, increased levels of oxidative and nitrosative stress.(Maes & Morris 2014), yet, incredibly, the author claims that patients can “regain control of their health through behavioural change”. This is a dangerous statement for anyone with ME?

It is important to note that there is no cure for Myalgic Encephalomyelitis, nor any universal treatment pathways, so this claim, by the author is incredible and potentially confusing.

Again she cannot possibly be referring to ME where recovery is not likely to happen until the serious underlying physical dysfunction is acknowledged, investigated, treated and cured; any discussion of rehabilitation, without treatment, therefore, seems inappropriate, unsafe and potentially harmful.

Until ME is given the universal respect of adequate biomedical investigation and treatment, recognition and understanding, patients, like my wife, will be left to suffer in unspeakable physical torment, for decades on end, with nothing suitable or appropriate or safe for her specific illness, because she has a diagnosis of Very Severe Myalgic Encephalomyelitis, absolutely not a fatigue syndrome, and does not require CBT or GET for recovery.

Both would be extremely dangerous in her situation and potentially fatal. Dr Byron Hyde, for example, points out how Graded Exercise Therapy” is not therapy – it is simply the enforcement of an opinion rather than a treatment based upon any scientific examination of a patient’s pathology and treatment of that pathology.…..Graded exercise programmes may be significantly dangerous to many of these ME patients”. (Williams 2009) It is important to note that anyone with ME, not just the most severe, might be harmed and suffer deterioration, going perhaps from mild to moderate or severe if they push themselves too far, determined to improve their health in a way that ignores their muscle fatigue ability and complex system dysfunction.

It is important to note that the ME Association have recently released a press release, stating (2016) that Graded Exercise made over 70% of patients worse .

 According to the Workwell Foundation, ME patients should only exercise for a maximum of 30 seconds (they recommend analeptic, not aerobic exercise). Programs such as Graded Exercise Therapy (GET) can lead to damage, sometimes long-term.(Ishikawa 2015). The most severely affected are unable to exercise or even move significantly, most of the time and require total care.

As Dr William Weir points out : the use of CBT and GET psychological treatments “in what is certainly an organic disorder is basically irrational” (Williams M 2009)

The MEA also found that the majority of people with ME (= 73%) do not gain any benefit in symptom relief when CBT is used as a primary intervention. It might be of relevance to mention here that mental effort is as exhausting and potentially deteriorative in ME, as physical exercise and simply beyond the capability of the most severely affected, who may struggle to think at all.

The MEA have called on NICE to withdraw their recommendation that GET should be a primary intervention, as this article unfortunately also recommends, for everyone with mild to moderate ME/CFS. Note, it is not recommended for people with Severe ME by NICE and thus a concern that this article includes reference to severity.

So why is is CBT and GET still being promoted ? Do the voices and experiences of those directly impacted count for so little

3. Wrong emphasis upon mental health issues

ME, contrary to what many doctors wrongly believe, is not depression. Komaroff AL (2015)

The article discusses medication yet critically fails to mention how people with ME are much more sensitive to medications than healthy people. She refers to amitriptyline as “the most indicated medication” without clarifying how in ME it is generally prescribed at a low dose for muscle, joint or nerve pain relief when ordinary painkillers are not effective and can sometimes help with sleep problems as well. (ME Association). The author does not warn that anti-depressants may overstimulate the sympathetic nervous system - which is already typically dominant in ME - and cause unbearable side effects (Ishikawa A 2015)

The results of a 2011 British study comparing functioning in people with ME vs people with rheumatoid arthritis, cancer and depression showed a staggering reduction in functioning in ME patients; all the functional health scores were dramatically worse in ME patients. ( Nacul LC et al 2011)

Affecting more people than AIDS, lung cancer and breast cancer combined, more people than have multiple sclerosis or cystic fibrosis, ME can leave a person as functionally impaired as someone suffering from diabetes, heart failure and kidney disease and as severely disabled as someone with late-stage AIDS, Multiple Sclerosis or a person undergoing chemotherapy.

People with Type I Diabetes, cancer or heart problems, it has been found, have a Quality of Life Score 33% higher than people with ME. (Hvidberg MF et al 2015). It is not clear, given the lack of clarity over what the author means by “CFS” who the author is referring to when she discusses the most severe. Without that clarity, the term is meaningless. 

What does “severely affected” actually mean in the context of this article? Does it mean severely affected by fatigue, by depression, by deconditioning ? None of which apply primarily to neurological ME.

It is not just a question of semantics, people with ME are extremely vulnerable to harm through the wrong nursing intervention.The prestigious Institute of Medicine has acknowledged how patients are maligned, told they do not have a real physical illness or that it is “all in their head” (Bested AC and Marshall LM 2015) . This is outrageous.

 4. Wrong approach

It is imperative that nurses understand there are no known universal treatments for ME available at this time, that some of the mainstream therapies applied to ME sufferers have been unhelpful or dangerous on many occasions.

It is pressing that nurses know that treatments such as Cognitive Behavioural Therapy (CBT - or Complex Incremental Pacing ) and Graded Exercise Therapy (GET - or Incremental Pacing ) , which unfortunately have been championed by nurses, are wrongly based on patients seeing their "symptoms as temporary and reversible and not as signs of harm or evidence of fixed disease pathology" (Bavinton et al 2004)

The premise of Robert's article, going much further than NICE, that people will recover, including the severely affected - with a " robust approach", is absolutely extraordinary claim, given the failure of the £1.3 million FINE Trail (2010) , a "treatment" for homebound patients that adapted and combined elements of cognitive behavior therapy and graded exercise therapy under an approach, called “pragmatic rehabilitation”, together with "supportive listening" (Wearden et al 2010).

The theoretical model behind the FINE trial is that physical symptoms are presumed to be the result not of a pathological disease process but of “deconditioning” or “dysregulation” caused by sedentary behavior, accompanied by disrupted sleep cycles and stress, triggered by patients’ “unhelpful’ conviction that they suffer from a progressive medical illness. Counteracting the deconditioning involved re-establishing normal sleep cycles, reducing anxiety levels and gently increasing physical exertion, even if patients remained homebound. (Tuller 2015)

The FINE trial , as I wrote at the time, (Crowhurst 2010) was a shocking way to perform a supposedly serious study on the most severely affected. The preposterous thinking behind FINE, was that patients would begin to understand their symptoms and, jointly with the nurse, agree a programme of rehabilitation. Never mind that ME is a neurological disease with devastating multi-system dysfunction and that no treatment had been elicited to aid patient recovery first.

In what other disease would rehabilitation be offered as front line treatment without first testing for and treating the illness itself ?

The 25% Severe ME group and the research charity, ME Research called, way back in 2004, for each severely-ill person on the FINE trial to be given a comprehensive medical assessment to identify physical symptoms and signs. They asked whether or not autonomic disturbances, seizures, muscle weakness, neuroendocrine disturbances (like sweating episodes), recurrent flu-like symptoms would be recorded over the course of the trial ? They also asked would symptoms like

 musculoskeletal pain, neurocognitive problems and sleep dysfunction be comprehensively assessed?

Tragically that did not happen.

Before the trail began, existing research warned that patients would be made worse by it and that the gains of CBT and GET were minimal (Kindlon 2009).

People with ME, especially the most severely affected require a skilled, delicate, infinitely gentle, certainly not a

"robust" approach.

As I point out in my book "Notes for Carers" (Crowhurst 2015): "When your whole body and head is on fire with multi - level pain and you have unimaginably complex multiple system dysfunction, resulting in complicated hypersensitivities and massive indescribable cognitive disruption, blanking out your mind, with a high risk of deterioration, just by someone being in the room with you, a moment by moment approach is realistically the only way that you can possibly get any of even your most basic needs met and even that is incredibly difficult and painful to achieve."

The experience and dangers of a poor or wrong intervention are hugely multiplied in Very Severe ME; the potential impact, for example from a "robust approach", could leap from causing pain, distress, even deterioration, to causing long lasting harm, totally unbearable symptom exacerbation, intolerable deterioration and for some people, indescribable torture- this is no exaggeration!

5. Wrong understanding

Incredibly the author claims: "Once severity is fully understood, the person can progress to re-introduce or increase activities they regard as priorities."

When you look at the plight of people with Severe ME, with their tormented bodies, widespread cognitive dysfunction, crushing muscle dysfunction, untreatable multi-layered pain, shaking spasms, transient paralysis, acute noise sensitivity, light sensitivity, touch, motion and chemical sensitivity, complex gut issues and difficulties swallowing and eating, the severity of the illness is shocking; in all my long experience, I cannot possibly see how anyone could claim to "fully understand" it.

I know that my understanding barely scratches the surface. What patient group, exactly, I wonder, is the author referring to, where "severity" can be understood ?

Severe ME is an illness of acute hypersensitivities and complex needs with no easy solutions and indescribable symptom experience, it is really essential, in our view, that you approach your interactions and tasks tenderly, with a quieted soul and a gentle, peaceful energy; we call that approach The MOMENT APPROACH :

M.O.M.E.N.T means:

M aximising the

O pportunity to

M eet

E ach

N eed

T enderly  

In addition the author recommends “motivational interviewing”. How could that be considered realistic when the most severely ill may be bed bound, housebound, periodically paralysed, unable to think, communicate, tolerate light, chemical or noise exposure or even tolerate being in the presence of another person due to the severity of their disease and risk post exertional deterioration from any effort whatsoever? Whom, exactly, is the author referring to with her recommendations? It just cannot be people with ME.

The most important thing for practitioners to understand is that people with this level of illness and profound hypersensitivity do not experience the environment in the same way as you. It is extremely concerning , for example, that the article casually recommends the use of an alarm to waken people from sleep. Any noise, potentially, can cause instant partial or total paralysis in someone with Severe ME, indescribable sensations, shock, pain, deterioration, distress, contact is unbearable, communication unachievable and nothing at all is physically possible.

 Given the complex issues around sleep and ME, patients experience greater levels of disrupted sleep than patients with multiple sclerosis for example (Krub et al 1993), it could be considered cruel to deliberately awaken someone with an alarm - or at all.

Add to that complicated cognitive issues, as well as light, touch, movement and chemical sensitivity and you have a very difficult environment in which to get needs met in a safe and caring way. My wife has been very badly harmed by unaware practitioners, recommending treatments which caused deterioration and moved from a diagnosis of Severe to Very Severe ME as a consequence.

The wrong treatment can lead to death, as in the case of Sophia Mirza, who was treated as having a psychosomatic condition and died of ME in 2005. (http://www.sophiaandme.org.uk/)

6 Lack of awareness

Given the body of evidence, over 9000 published papers (Komaroff 2015b) outlining the biomedical abnormalities in ME, a history of epidemics stretching back over 70 years and an active patient movement, there is no excuse for the apparent lack of awareness, especially of Severe ME, displayed by the author. Has she watched the film “Voices from the Shadows”, for example, which illuminates the plight of people with Severe ME and the harm done to them, through the psychosocial approach she advocates ? (Voices from the Shadows).

 If not, why not? I can find no reference to Severe ME in the literature at all in the article, despite Roberts writes about severity. The references cited are heavily biased towards the increasingly marginalised and discredited psychosocial school of thought and the charities that collaborate with them.

That is a serious omission, but what is more concerning still, is that, given all the controversy over the PACE Trial, Roberts has still referenced it, despite it coming under more and more mainstream criticism. It has been described as a "a wasteful trainwreck of a study" by Professor Coyne, a “mass of un-interpretability to me” by Emeritus Professor Jonathan Edwards and the “height of clinical trial amateurism” by Professor Bruce Levin . (MEpedia).

As Vink (2016) reports: during the PACE trial " the eligibility criteria, both subjective primary outcomes, and most of the recovery criteria were altered, creating an overlap of the eligibility and recovery criteria.... Therefore the proportion negatively affected by CBT and GET would be between 46% and 96%, most likely estimated at 74%, as shown in a large survey recently conducted by the ME Association.....Medication with such high rates of adverse events would be withdrawn with immediate effect."

An eleven thousand signature petition has been sent to the Lancet calling for the retraction of "misleading analyses and claims", 42 academics from around the world have also written to Dr Richard Horton pointing how out the study "has no place in published research".

Given the failure of the FINE and PACE Trials, which underpin the psychosocial approach, it is difficult to comprehend how the methods outlined in Diagnosing and managing chronic fatigue syndrome are still being promoted, recommended and published, in association with the name ME at all.

In the interests of patient safety, this article should be withdrawn in its current form and at the very least should carry greater clarification of whom it is aimed to specifically help and the name Myalgic Encephalomyelitis should be withdrawn from the article. It calls into question the veracity of the peer- review process and highlights the dangerous dominance of the psychiatric lobby.

Greg Crowhurst 

References

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http : //www.biomedcentral.com/1741-7015/4/9/comments#298590

Kindlon T (2009) Further comments on the outcome measures

being used and suggestions for other outcome measures that

could be useful in such trials

http://www.biomedcentral.com/1741-7015/4/9/comments#298590

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