Positive Health Online

I was dreading the outcome of the US Institute of Medicine (IOM) report on ME/CFS.  All of us who have this illness (or one of these illnesses) know from bitter experience that physical exercise makes us worse.  We also know that the two treatments which both the US Centre for Diseases and NICE recommend as ‘safe’ and ‘evidence-based’ are Cognitive Behaviour Therapy (CBT), to change our ‘false belief’ that we have a serious physical illness, and Graded Exercise Therapy (GET) to get us to increase activity.  We know that we may have to cooperate with these treatments.  In the United States, our medical insurance may depend on cooperating with these treatments, while in England, we can be threatened with loss of whatever income we may be receiving on the basis of disability unless we do so.  We also know that many who were mildly or moderately ill have been driven by  exercise  (because of our own determination to fight the illness, casual advice from our doctor, or because we are undertaking a programme of Graded Exercise Therapy) into severe illness, a level of suffering and disability greater than that experienced by many people who are terminally ill until the very last weeks of their lives.  But for us, this state of virtual paralysis accompanied by unremitting pain can continue for years.

The influence of the Wessely group of psychiatrists, who have created an empire based on providing these treatments, and who are embraced by the medical, political and media establishment here in the UK has extended to many other countries, including the United States, Australia, Denmark and Germany.

Like many others, I assumed that by assembling a group of individuals, many of whom were chosen because they were not involved in research, treatment, or care of people with ME, the US agencies who set up this IOM review process could be confident of achieving a report that would simply rubber-stamp the psychiatric view, and give yet another prestigious institutional level of support to this medical abuse.

Chaired by a woman who has both medical and legal degrees,  Dr Ellen Wright Clayton,  whose speciality is bioethics, here is what the report (Beyond Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: Redefining an Illness, February 10, 2015) has to say:

“Conclusion:  It is clear from the evidence compiled by the committee that ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients.’  (p. 209)

“PEM (Post-Exertional Malaise) is worsening of a patient’s symptoms and function after exposure to physical or cognitive stressors that were normally tolerated before disease onset.  Subjective reports of PEM and prolonged recovery are supported by objective evidence, including failure to normally reproduce exercise test results (2-day CPET) and impaired cognitive function.  These objective indices track strongly with the presence, severity and duration of PEM. 

“Conclusion: There is sufficient evidence that PEM is a primary feature that helps distinguish ME/CFS from other conditions.’

Note the phrase “serious, chronic, complex, multisystem disease”.  Note also the emphasis that “subjective reports” are supported by “objective evidence”, and that these “objective indices track strongly with the presence, severity and duration of PEM.”

Here, and elsewhere, the report reiterates the message that this is a disease which is physical, and the physical effects are objectively measurable.   Here is the definitive statement:

The Institute of Medicine (IOM) committee recommends the name  systemic exertion intolerance disease (SEID) for this disease. This new name captures a central characteristic of this disease - the fact that exertion of any sort (physical, cognitive, or emotional) - can adversely affect patients in  many organ systems and in many aspects of their lives.  (page 2)

Media accounts  following publication of the report made fun of the new name, often leaving off the final word, “disease”. Many patients are distressed and angry, believing that this is just another way of saying that we are lazy.  Dismissal of the name ‘Myalgic Encephalomyelitis’, coined by Ramsay, is another ground for serious objection to the new name.  The Committee claimed that there wasn't  evidence of inflammation in the brain (encephalomyelitis) and that muscle pain (myalgia) was not always a feature.  Therefore many of the most passionate and effective ME advocates are extremely opposed to this proposed renaming, as well as to many other aspects of the report.

Interestingly, and for me, grounds for hope, is the fact that some members of the psychiatric lobby also object.  I believe it is Peter White who was immediately came out with a statement that CFS was perfectly fine.  Then Edward Shorter, Professor of Medicine and Professor of History at Toronto University, and a major proponent of the “CFS is a somatoform disorder” school of thought, weighed in with an article stating that the IOM Report was just giving in to the patient advocacy groups. Did I mention that the very first recommendation of the report is that the name “Chronic Fatigue Syndrome” be dropped entirely, as it trivializes the illness? 

There is a very serious problem about classification, in that up to now, the International Classification of Diseases (ICD) lists Myalgic Encephalomyelitis as a neurological disease, 93.3, and this diagnosis has offered patients some protection against the consequences of being labelled as suffering from a psychiatric disorder. Chronic Fatigue Syndrome is listed within the psychiatric classification as a somatoform disorder. 

What the IOM Report suggests is to get rid of this label, and for SEID to have its own classification, “not associated with CFS or neurasthenia”.  As they also insist that this is a “disease”, in which exertion of any type may cause harm In many organ systems in the body, it seems reasonable to assume that any such category would be included in a section for physical illnesses, and that they have made that clear. 

We need to be clear in our own minds, and in any future treatment recommendations, that “exertion intolerance” is a medical term.  Lactose intolerance, gluten intolerance, nut allergies….”intolerance” means that the substance or activity  which is not  tolerated does physical harm.  

The new label abandons Ramsay's name for this illness, but it honours his description: “a peculiar form of fatigability whereby recovery from even minimal exertion may take hours or even days”, “and has an alarming tendency to become chronic”. What is even more important is the support it offers to his treatment recommendation.  “Complete rest from the outset gives the best prognosis, and those whose conscientious temperament or because of advice to exercise continue to exert themselves end up in a permanent state of exhaustion”.

Where does this leave CBT and GET?  Our belief that we have a serious medical disease is correct, and so is our belief that exertion makes us worse.  No need to change those beliefs…it is the psychiatrists who need to change theirs.  Graded Exercise Therapy, to get us to increase our level of activity?  Eating peanut therapy for people who have nut allergy?  High sugar diet for diabetics?  Smoking therapy for lung cancer?  Fifteen terrible things to think about as a treatment for depression?  If prescribing things that make a disease worse as treatments becomes accepted, the possibilities are endless!

The history of this illness is riddled with false beliefs: that women are prone to hysterical malingering, that anyone who insists they can't perform expected social roles (hold down a job, perform household/child-care roles, go to school) must be doing it on purpose, that there are ‘secondary gains’ for previously successful, high-earning professionals to take to their beds, often losing their job, their marriage, their income and their home in the process, that exercise is invariably beneficial, that if an illness has a lot of symptoms, it must be imaginary, that if neurologists can't find the cause, other ‘organ systems in the body’ don't need to be investigated, it's OK to call it ‘functional’ and turn the patient over to the psychiatrists. 

As a psychotherapist who also has ME, it has seemed evident to me that resting was something the illness forced upon me, that it was physical exertion rather than emotional triggers that made the illness worse, that it did not respond to psychotherapy, and that provided I did everything possible to economise on physical exertion, I was able to manage essential activities.  My greatest fear was that some psychiatrist would come along and insist that I run down the garden - and I was right.  As a person with a relatively good standard of recovery, I have done all I can, including writing a book (A Beginners Guide to ME/CFS) to tell people with this illness above all to rest.. to become experts at minimising exertion…in order to create the possibility of getting better instead of getting worse.

I also see the imposition of GET as serious medical abuse.  Many patients report having progressed from moderately to severely ill as a result of misapplied GET.  If the term ‘serious medical abuse’ sounds extreme, let me ask you: if you were assaulted in a dark alley by a person who inflicted injuries which resulted in your spending the rest of your life in a wheelchair, or bedridden, in constant unremitting pain, how would a proven perpetrator be treated in a court of law?

My response to the IOM Report is that they have labelled the essential features of this illness in such a way that, correctly understood, it could and should completely undermine the psychiatric position and their damaging treatment recommendations.

Already the US Centre for Disease Control has withdrawn its CFS Toolkit’ which supported CBT and GET.  If / when NICE does the same, and rest is prioritized as an immediate essential response (the report states that although a diagnosis requires that symptoms persist for six months, treatment for symptoms should begin immediately), people with ME will have the best possible chance of genuine improvement.  I live in hope!