A Blog For Those Affected By Environmental And Invisible Illnesses Written By Fellow Survivors
Chronic Fatigue Syndrome Guidelines for Doctors Still Exhibit Ignorance and Misinformation
In 1991 I was diagnosed with Myalgic Encephalomyelitis (M.E.) following a two day stay in hospital for a battery of tests. The diagnosis of M.E. was given by my GP and hospital specialists. It's funny then that the latest guidelines to doctors from the Royal College of General Practitioners (RCGP) here in the UK blatantly dismisses the very existence of this illness - referring to M.E. as a "colloquial" term. Rather odd when this is a true medical name which had been in use for decades, in contrast to 'chronic fatigue syndrome' or 'CFS' - the all encompassing term with which anyone suffering from a single symptom of mild chronic fatigue to what we used to know as severe M.E. is now branded.
Unlike those who pull the strings at the RCGP, and despite my 20 years of illness, I can be objective and like to give credit where credit is due. I have been pleased to note during this period that my GPs have become much more supportive. After my initial diagnosis aged 12 I was given no and told nothing could be done and both myself and my parents were made to feel like we were in the wrong - I apparently was a young hypochondriac with a dislike for school - and my parents were, well, bad parents for raising such a child (both polar opposites of the truth!). Nowadays however, I have a GP who not only is understanding and empathetic - believing ME/CFS patients are suffering the same ignorance as those with multiple sclerosis (MS) once did before its pathophysiology was elucidated - but also willing to entertain my requests for testing and biomedical interventions. I am hugely appreciative of this even though official guidelines and restrictions mean it is most often impossible to fulfill these requests. It is just nice to have a doctor working with me rather than against me!
Getting back to the new RCGP guidelines. If we accept that we now have CFS rather than M.E., the tone of many parts of the document, intended to guide physicians in their handling of patients presenting with the condition is condescending and dismissive and a blinding ignorance to its true nature shines throughout. Unbelievably one of the factors listed as predisposing an individual to CFS is "denial" - the sheer irony of which seems to be lost on the authors of the guidelines. Surely it is they who are in denial. A glaring example of the denial exhibited by the RCGP is the continuing allusions to CFS as a mental health disorder. The RCGP seems to love citing opinions of psychiatrists to supposedly backup their positions. This despite the fact that exactly three years ago they agreed to stop referring to CFS as such after the intervention of the ME Association and the House of Lords (see here). It is quite unbelievable that with decades of research showing that CFS is an organic illness there are still those in medical authority who wish to label it as a mental illness. Sure some people with CFS have comorbid depression or anxiety, but at least as many do not. Just like some people with MS or cancer or diabetes (or a long list of other diseases) suffer mental health problems while others with the same diagnosis do not.
Equally infuriating is the continued insistence that cognitive behavioural therapy (CBT) and graded exercise therapy (GET) are the be all and end all of CFS treatment. This is the ultimate example of evidence-based medicine gone mad. Despite large numbers of both CFS patients and doctors declaring loudly that CBT and GET have not improved their health and quality of life, and in some cases have been harmful, the RCGP stubbornly stick by these therapies. So it's official - the medical profession now prefers to listen to flawed "evidence" rather than the patients whom they have taken an oath to help. If proof were needed, the recent much hailed PACE study that supported CBT and GET was riddled with methodological blunders. One is example is the use of a single six minute walk to assess exercise tolerence and the effects of exercise on symptoms. Such a walk would be within the limits of many CFS patients' tolerence while any amount of running or other truly aerobic exercise would not. Not to mention the cumulative effects of multiple walks of that duration which a healthy person would manage without even thinking about during the average day but which would quickly take their toll on someone with CFS. There is a clear lack of understanding about what CFS is on the part of doctors and researchers that leads to bad research and bad treatment recommendations. Why does this lack of understanding persist - oh yes, I already mentioned that these individuals have stopped listening to patients!
The fact is that the current evidence base clearly shows CFS to be a hugely complex condition with multiple areas of dysfunction centred around the intersection of the nervous, immune and endocrine systems. There needs to be concerted financial and manpower investment into basic research to pin down exactly what is going on in this illness. Additionally, researchers and doctors need to listen to patients in order to gain better understanding of CFS and to be in a position to design better studies. If there is one illness where patient participation in the research process is required if progress is to be made...this is it! Perhaps then the likes of the RCGP will find it impossible to produce another document as ignorant and insulting as this.
Read the guidelines here.