Why complain if it works?
ME patients from a variety of countries report that cognitive therapy and graded exercise make them more ill – why would they lie about it?
By TRUDE SCHEI,
Trude Schei
Has anyone ever heard about patients complaining about treatment that works? Patient surveys from the UK, Norway and Ireland, among others, show the same results – more patients experience a worsening of symptoms as a result of these therapies than those who benefit from them.
Live Landmark (the most highly profiled advocate for Lightning Process in Norway) insists there in a conspiracy in an online «ME community» that opposes serious scientists, only spreads information if it agrees with its own views, and even gives harmful advice to patients. According to Landmark, the patient organisations are part of this conspiracy.
Logical explanations
A simple explanation is often the best explanation. Instead of searching for conspiracies, perhaps Landmark should have a look at the obvious, logical explanations for the phenomena she describes.
ME patients spend a great deal of time online simply because they are ill to the point where many are confined to their homes or even their beds. Online social contact is often the only social contact they have. There are numerous ME related groups, many of which has nothing to do with ME (e g photography or interior design), and only a handful are administrated by the patient organisations.
In addition, there are a plethora of blogs where discussions run high. These Facebook groups and blogs have their own identities, often divergent views on research and treatments. As far as I know, there is no homogenous “ME community”.
I am myself the admin of a Facebook ME patient group of about 3 000 members. In Norway as a whole, there is probably somewhere in between 10 000 and 20 000 ME patients. No matter which group one examines, there will be individuals purporting stronger and less nuanced opinions than others. If you look at, say, cooperatives and co-ownerships, you will find a similar occurrence of disputes. ME patients are just like other people.
Using the statements of a few to judge the entire group of patients is thus unreasonable.
Listening to the patients
A varied and nuanced debate on ME is essential. Polarising fractions is not helping anyone. But a fruitful debate does not simply mean that patients listen do the doctors; it means doctors and scientists need to regard the patients’ experiences with respect and actually listen to what they say. And it means these professionals have to take into consideration the question I initially posed: Why would patients complain about treatments that work?
The Norwegian ME Association believes that cognitive therapy, used correctly, can be a valuable tool in mastering serious disease. However, when cognitive therapy is utilised to “cure” ME, user surveys from several countries unequivocally show that the majority of patients get worse rather than better. Looking at graded exercise, the numbers speak even more clearly. Now, why would patients complain about these treatments if they really did work?
And why do some patients still benefit from them?
Insufficent research
As with all other areas concerning ME, there is a monumental lack of research on diagnostic criteria and prevalence. The Institute of Medicine (IOM) in America recently presented a report proposing a new set of diagnostic criteria to be validated and re-evaluated within five years.
Two British studies illustrate the importance of clear and unambigous criteria.
These studies showed that almost half of the patients who were diagnosed with ME in fact had been misdiagnosed. A range of diseases have similar symptoms, and the patients suffered from conditions such as sleep apnea, other sleep disturbances, coronary disease, multiple sclerosis or depression.
The enormous degree of misdiagnosis is tragic, mainly for those who suffer from illnesses that are treatable and who instead end up with an ME diagnosis. Also, diagnostic criteria that may include persons who do not suffer from ME
makes it difficult to conduct good research. Studying patients with similar symptoms but different diseases tells us nothing about ME. The many cases of misdiagnosis also means that one should be very cautious in seeing one patient’s experience as representative for the whole group. As long as there is no biomarker for ME, no one can know with 100% certainty that any given patient actually suffers from ME.
Well documented
At the moment, the closest thing to a diagnostic test for ME is a two-day cardiopulmonary test. This is a failsafe test to measure one’s ability to exert oneself. I have myself completed the test, and on day 1 I managed to perform as well as a sedentary adult of similar age. On day 2, however, my physical function was dramatically diminished. This phenomena is characteristic and practically unique for ME patients, and has been well documented in a series of peer reviewed articles. All other patients perform as well or as poorly on day 2 as they did on day 1. Part of the explanation for this may be found in a recent study that documented how the muscle cells from ME patients show abnormal behaviour in vitro. Clearly, this has nothing to do with the patient’s psyche.
I am not alone. Experiencing a prolonged symptoms increase when exerting oneself is characteristic for ME to the point where IOM signifies this as the most important symptom along with the actual fatigue.
IOM also suggests a fresh name for the illness: Systemic Exertion Intolerance Disease. “Systemic” because every single system in the body is involved. In medical terms, “exertion” means that the muscles are working. “Intolerance” is self-explanatory. “Disease” underlines that this is an illness, not just a condition. Before presenting their report, IOM examined more than 9 000 articles. In all likelihood, they also had a peek at the articles to which Live Landmark is refering.
The PACE study would certainly also have been included. Had Landmark made herself familiar with it, she would have known that no objectively measured improvement was found for neither cognitive therapy nor graded exercise. A flaw in the design of the study meant that patients could deteriorate during the study and still be considered “recovered”. The authors of the IOM report found no evidence of any effect of cognitive therapy on ME.
Not representative
The Norwegian ME association is thrilled for any recovering patient with an ME diagnosis, regardless of which road they travelled to achieve this goal. Undoubtedly, some have experienced an improved condition through varied types of mental training. According to magazines, some have regained their health through diets, and others have reaped the benefits of physical exercise. However, these patients are not representative for ME patients.
Most people suffering from ME have tried the proverbial «everything» throughout many years of illness. The Norwegian ME association recommends pacing and finding a balance between rest and activity. This advice is based on clinical experience from renowned ME experts, and on research and patient experience. Very few have made complaints about this advice, but many patients say they have become more ill as a result of graded exercise.
Again – why would patients complain about a treatment that actually works?
