One comment came from Douglas who encapsulates a lot of what people who develop this disorder will experience.
Classical type onset, viral infection followed by manifestation of the disorder. Thus, follows the endless barrage of tests followed by further endless and often fruitless consultants from various disciplines until eventually a diagnosis of CFS is perhaps made.
Here’s my own experience and opinion. The bottom line is that the vast majority of physicians (I’d estimate around 99%) have virtually no or very limited experience and understanding of CFS, let alone ME. It is not taught in medical school (in fact it was never mentioned in the 6 years I undertook in undergraduate training.) I have never come across a patient with this condition in hospitals and unless you have access to specialist centres (a rarity let’s remember to most), are unlikely receive a diagnosis, let alone effective treatments. As far as I remember, the CFS centre in Kings College London still recommend CBT and graded exercise as their main treatment options. One must remember that around 99% of patients with this disorder likely get treated under primary care with limited exposure to hospitals, let alone admission (I have worked in ED for a year and never had one patient admitted with such a disorder). Most of you reading this will have pursued referrals to specialists but they will investigate what they are familiar with and once they have exhausted their usual battery of tests, will re-refer or perhaps give you a diagnosis of CFS as a last resort.
The ME association in the UK has tried to provide information packs to primary case physicians in a boost to educate them on this condition but it just goes to show there is a lot of ground to make up on.
Truth is, despite all the emerging research, we are still not really closer to knowing the cause of this disorder. Yes, we know without a doubt there is a likely combination of trigger factors, something is definitely going on that is pathologically wrong, but even these signs (usually discovered under research conditions) points to a lot of different mechanisms without one single common pathway. Is this a neurological illness, a myopathic one, an immunological one, or as evidence demonstrates, probably a combination of all of these and more.
We and many others are in what I like to call in a grey area of medicine. Simply put, most physicians don’t have a clue how to recognise, diagnose and treat this disorder. Analogous to this and particularly for those unsure of a diagnosis of CFS/ME, you will likely waste a lot of your hard-earned money, particularly in North America where the cost can be excessively high, pursuing what you probably believe is an elusive diagnosis waiting to be uncovered with the lure of a potential cure. I have been down this road for 10 years and as a physician, I have had access to a ridiculous amount of blood tests, referrals to specialists, radiological and endoscopic investigations. Even CFS specialists will have their own take on treatments eg targeting inefficient energy mechanisms or dysfunctioning cell lines but there are no large-scale studies to show any benefit from ANY treatment. This may change as we make inroads but progress is slow and funding for research remains low compared to many other disorders which affect vastly smaller populations. Furthermore, a lot of research has been performed under small-scale groups with often poorly defined criteria and don’t at this stage contribute to any potential treatment.
Remember, this is a syndrome and is diagnosed by meeting the criteria as per Carruthers et al (2011). As I’ve already said and this is my own personal opinion (and many will disagree), I don’t believe you need to meet all these criteria to suffer from what in my personal opinion is a likely common pathway of disease. I see this as a spectrum of disease. ME is simply the end-point or the most severe manifestation of the disorder. This group has further pathological and genetic changes which destroy their quality of life and drive many of them to be house or bed-bound.
Traditionally, graded exercise and CBT were the only recommended options under NICE guidelines but CBT has shown little difference and ME patients will be in uproar over graded-exercise as current best evidence suggests this simply makes things worse. So we are left with anecdotal evidence or possible small-scale studies with which to pursue.
Some will travel to San Francisco to see a certain physician who will treat them with IV infusions of rituximab. A course of treatment costs over $6000. I don’t believe this is ethical given little evidence for this to date. We need replicated and larger scale studies (compared to the Fluge & Mella’s Norwegian 2013 one that made a tentative association between CFS symptoms to B cell abnormalities). Phase 2 trials are underway if I remember correctly with the possibility of Phase III trials so I will await these and the overall design study in general.
On a positive note, we are making steady progress and with more clearly defined cohorts and supported by double-blind placebo controlled groups, I have no doubt we’ll get to the bottom of a multi-aetiological disorder with the hope of proper effective treatments. We all want a quick cure but patience will be key!
All the best,