A Blog For Those Affected By Environmental And Invisible Illnesses Written By Fellow Survivors
Chronic Fatigue Syndrome Biomarker Discovery: Possible Testing, Diagnosis & Treatment
Anyone who suffers from myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) will have been delighted to see news last week that reliable biomarkers for the disease had finally been found. Essentially, researchers at Columbia University have pinpointed changes in immune function that go a long way to proving once and for all that the illness once dismissively dubbed 'Yuppie Flu' is most certainly a physical, biological illness rather than a psychological disorder. Something any sufferer knows to be the case all too well from the moment it cruelly turns their lives upside down.
The key point that makes this study so important is that it was conducted on a large scale with 298 ME/CFS patients involved. In medical science this gives the findings a huge amount of credibility and reliability. It means the findings cannot be ignored and should lead to greater funding from both governments and non-governmental organisations (NGOs) and charities for future research and education. If confirmed, the findings will also give doctors, health care systems and medical insurance companies no scope to dodge their obligations to treat patients with respect and provide the care and support they need and deserve.
As a ME/CFS sufferer of 25 years, from the age of 11 years old, this seminal research is music to my ears. For me, I accept it may not lead to effective treatment for myself personally, but it should mean those who develop this horrible illness in the future can be diagnosed and treated early, offering a much brighter prognosis and chance of full recovery. This is an illness that destroys millions of lives worldwide, tears families apart and costs governments billions in lost tax revenues and disability payments (in cases where patients are lucky enough to be granted them).
When I was diagnosed in 1991 after all conventional tests came back negative or 'normal' following an in-patient stay in hospital - my parents and I were basically left on our own to cope with a complex illness we (and seemingly everyone else) knew nothing about. Being extremely stubborn by nature my response was to attempt to carry on living my life as normal but this only worked (sort of!) for around 3 years until total exhaustion began to kick in and my "healthy facade" became harder and harder to maintain.
My personal experience ties in exactly with what the Columbia researchers have discovered. The key findings of their study indicate that for roughly a 3 year initial period the immune system goes into overdrive with excessive secretion of signaling chemicals known as cytokines keeping it perpetually switched on - as it would normally be when fighting viral infection. High levels of the specific cytokines identified are associated with the symptoms familiar to everyone as those experienced when suffering from flu or similar viral illness. Not surprisingly, this is exactly what the early stages of ME/CFS feel like - exacerbated by physical exercise which raise the cytokine levels even further. Mirroring my experience exactly, the scientists found that after an initial period of around 3 to 4 years the immune systems of patients simply can't maintain what it is being asked to do and it becomes exhausted. The illness then enters a new phase and patients are themselves left completely exhausted and because the immune defences have been depleted, also open to opportunistic infections from pathogens such as bacteria and fungi/yeast (again, matching my experience and that of many others I've spoken to over the years).
Why Is This Study Such Good News?
If replicated, the findings of this study should point the way to the development of diagnostic lab tests to unequivocally confirm ME/CFS diagnosis quickly and easily - and shortly after to effective treatments.
Early Diagnosis: Key To Recovery?
The Columbia study actually found 51 immune markers specific to ME/CFS patients when compared to healthy controls. It should be possible to develop a simple blood test to screen for these (or a subset of the most important). With this in hand, diagnosis using this lab work and a patient's symptoms and medical history will become as easy as diagnosing other serious chronic diseases such as diabetes or heart disease.
Since it appears that there is this 3 year window to reverse the initial immune dysfunction seen in ME/CFS, early diagnosis becomes critical to successful treatment and a healthy future for patients. Being a sufferer of 25 years trust me when I say I am not being overly dramatic to say early diagnosis may therefore make the difference between a 'normal' life and one where an individual is robbed of career or employment, normal family life, social life, ability to enjoy sports and other hobbies...the list is literally endless.
Treatment Could Already Be At Hand
Perhaps the best news of all to come out of the Columbia study is that treatments may already be available. Drugs that suppress the excessive secretion of the cytokines that "switch the immune system on" - and in ME/CFS, keep it switched on - are already available. My personal feeling is that if I had been treated with these drugs following my diagnosis I would have felt 'well' and most likely not have spent a whole day in bed following any moderate physical exercise like a P.E. class at high school.
Perhaps more importantly even than feeling well again would be the long-term benefits. With the immune system carefully regulated with the aid of these drugs (i.e. kept within normal ranges) it seems logical to expect that it would not become exhausted and the illness would not progress and become much, much harder to treat and live with. Of course, this is just my own speculation but I do have a lot of insider knowledge! In the longer term I suspect drugs that are more specifically targeted will be developed and we will be able to confidently start talking about ME/CFS being a curable disease in the large majority of cases.
As things stand today it is still a lottery as to whether patients get an accurate diagnosis and if they do it can take years of going from doctor to doctor being told conflicting information. If you're unlucky as an ME/CFS patient you are simply dismissed as "crazy" even in 2015. Equally, treatment and prognosis is just as much of a lottery. If you get an early diagnosis and the right doctor caring for you then you might stand a good chance of recovery, for most of us things have turned out to be far more bleak.
I sincerely believe this research is the turning point and I am looking forward to a future where ME/CFS patients no longer have to "suffer in silence" but instead are diagnosed and subsequently treated - in every sense of the word - in the same way as patients suffering from other serious physical diseases.