Imagine Feeling Like Shit For The Rest Of Your Life...
That's the prospect faced by millions of people around the world suffering from ME/CFS, a debilitating, chronic illness characterized by profound physical and mental exhaustion, cognitive disruption, gastro-intestinal abnormalities, and a plethora of other symptoms, all worsened by stress or exertion. The term Chronic Fatigue Syndrome is used somewhat reluctantly by the patient community, who argue the term is an outdated misrepresentation of a disease which has made many housebound, and robbed them of their lives. May 12 is ME Awareness Day, and this year there is more reason to spread the word than ever before.
Without a diagnostic test available, the condition has baffled and divided the medical world for decades. With a significant number of psychiatric academics claiming it to be psychosomatic, research funding has been limited. Very limited indeed. Much to the frustration of the patient community, in USA, Federal spending per ME/CFS patient was until recently a paltry $5 annually, compared to $250 per MS patient and $2500 for HIV/AIDS.
Basket Case...
So, on top of their symptoms, ME/CFS patients have to deal with the emotional pain of being dismissed as a "basket case" by family, friends, doctors, and in the media. So, imagine feeling like shit for the rest of your life, while nearly everyone around you thinks you just need to dust yourself off and rejoin society. The fact that depression and suicide are often features of people with ME/CFS muddies the waters further, as does the undeniable fact that there must be some segment of the patient community who have self-diagnosed ME/CFS but may be suffering from another undiagnosed physical or psychological ailment.
Wait a second though. Scientific research hasn't come up with any answers, so it must be all in their heads, all of them... right? At this juncture, I think it's important to point out the difference between faith in the scientific method, and the scientific world itself. The scientific method is the best method we have for expanding mankind's understanding of the universe, but with humans at the steering wheel, scientific progress is hindered by bias, politics, assumption, and downright incompetence.
Many ailments taken very seriously today were once put down to hysteria, depression, or stress. Some, only recently. Helicobacter Pylori, a bacteria responsible for peptic ulcers, was only discovered in 1982. Before then it was postulated that stress, and even spicy food, caused the potentially fatal stomach disease. There is no reason to believe ME/CFS won't be the next disease to be torn from the grips of psychiatrists, and placed firmly into the hands of physicians. In fact, it may happen sooner than expected.
Hope For The Future...
Most ME/CFS patients know what it's like to be given hope, only for it to be shattered. They have been targeted by a ruthless (and not always well meaning) alternative medicine industry. Without any scientific backing, every sort of oil or herbal extract has been promised to give them their lives back. With doctors having no answers, why wouldn't they be vulnerable to trying these things? More disappointing still, the "XMRV debacle". The ME/CFS patient community exploded with excitement back in 2009, when a paper published in the journal Science claimed to have discovered a new retrovirus, XMRV, which appeared to be causing ME/CFS in humans. In the months that followed, further studies disproved the XMRV link. We were back to square one.. or were we?
Ever since the XMRV controversy, there has been a renewed scientific interest in CFS/ME. Suddenly it seemed, patients were being heard. The suffering of millions was being taken seriously for the first time ever. Around the globe, millions of dollars are finally being poured into ME/CFS research, from governments as well as charities. The race is on, and now in 2018 we are seeing progress at a rate nobody ever expected to see.
Vindication...
In 2017, using cutting edge techniques, researchers in Stanford University discovered a correlation between levels of certain cytokines (immune-signaling proteins) that track with illness severity. Not only was this very compelling evidence of a significant biological marker, it also made sense in the context of the illness. Of the 17 cytokines identified, 13 were types that cause inflammation. Chronic inflammation has often been theorized to play a significant role in CFS/ME symptoms. Speaking to NPR.ORG, lead author Dr. Jose Montoya, professor of infectious diseases at Stanford said; "This is a field that has been full of skepticism and misconception, where patients have been viewed to have invented their disease. These data clearly show the contrary, and demonstrate what can be achieved when we couple good research design with new technology". Elsewhere, Transient receptor potential melastatin 3 (TRPM3) have been identified as another potential biomarker for diagnosing CFS/ME. The TRPM3 cell receptors in CFS/ME patients are dysfunctional, according to another study, by Professor Sonya Marshall-Gradisnik. TRPM3 have interactions which effect the aforementioned cytokines, so now there are two distinct, yet related routes for further exploration. In short, we had smoke for decades, but now we can see the fire.
What comes next is hopefully what every CFS/ME patient has been dreaming of; further research, diagnostic tests, and eventually, treatments. But best of all though, vindication. With supporting evidence mounting fast, there has never been a better time for patients to proudly proclaim "THIS IS NOT ALL IN MY HEAD". People say "when you're a hammer, everything looks like a nail", but the world of psychiatry needs to do better. Psychiatrists need to decide which side of history they want to be on, because a storm is coming in their direction, and it's not going to be pretty.
Words: @condra. Images: Pixabay
Sources & Further Reading:
Impaired calcium mobilization in natural killer cells from chronic fatigue syndrome/myalgic encephalomyelitis patients is associated with transient receptor potential melastatin 3 ion channels
Scientists Edge Closer To Elusive Lab Test For Chronic Fatigue Syndrome
23 years of the discovery of Helicobacter pylori: Is the debate over?
Chasing the Shadow Virus: Chronic Fatigue Syndrome and XMRV
Cytokine signature associated with disease severity in chronic fatigue syndrome patients
Unrest Trailer