“Everybody gets so much information all day long that they lose their common sense”, Gertrude Stein
To write that I am frustrated, angry, and discouraged over the recent hoopla this week in the news from the U.S. Institute of Medicine (IOM) report on Chronic Fatigue Syndrome is to be putting it mildly. As is usual with someone who has CFS and fibromyalgia (FM) I awoke several times last night. During those wakeful periods I wanted to write this blog with great haste in protest for whomever would read this rant from me. I have to admonish my readers that the report is not to be viewed with great enthusiasm. The IOM state that CFS should now to be regarded as a disease. I write this knowing that the majority of my readers want these conditions to be regarded as such and for which a medication can be taken and our conditions would be cured. But as I have repeatedly written over many years, this cluster of symptoms which make up a syndrome cannot be ‘cured’ with the usual allopathic or alternative medicines. It is far more complex than that. Hunts for viral, bacterial and hormonal causes have been on-going for many decades. I had hoped that this was all behind us. Is this trend going to be re-invented?
The first indication of this awakening of the American health experts to the reality of CFS and FMS came to my attention from an article of André Picard, whose articles I respect and admire tremendously. It is from the newspaper The Globe and Mail, Tuesday, February 17, 2015 A11 and is in regard to Chronic Fatigue. While the f word (fibromyalgia) is only mentioned once it is nonetheless aligned with chronic fatigue and I have conjoined the two for many years. In fact there may be quadruplets involved here if we combine multiple chemical sensitivities (mentioned by Picard) and PTSD. Happily, Picard calls CFS and FMS a ‘disorder’ in spite of the fact that the U.S. Institute of Medicine has reported CFS as a disease. I continue to call it a ‘dis-ease’ or a syndrome and will not give in to the claim or possibility of a microbe causing disease, in spite of the fact that it does indeed cause secondary illnesses.
The second sighting of this American report was noted February 21, 2015 on the CBC news. So now, after decades of the sufferings of millions of people world-wide, the voices of those of us with several of these invisible, but alike, dis-eases will be legitimated. Furthermore, the ways in which it is to be a bona fide condition worthy of being taken seriously is to call it an actual disease.
So, how closely are CFS and FMS related? I have debated this for many years. I have searched, researched and contemplated about the relationships between the two as well as what I once called Gulf War Syndrome, shell shock, battle fatigue (now called Post Traumatic Stress Disorder) and the elusive Multiple Chemical Sensitivities- all of which are invisible, said to affect women more commonly than men (with the notable exception of PTSD) and cannot be diagnosed with standard medical tests. My conclusion for all of these disorders is the same as it has been since my book and all the blogs I have since written. THESE ARE CONDITIONS THAT ARE CAUSED BY A HYPER-AROUSED CENTRAL NERVOUS SYSTEM IN HIGHLY SENSITIVE PERSONS. These disorders are not exclusive to highly sensitive women but men and children as well.
It is important to discuss the commonalities among the four dis-eases of CFS, FMS, MCC and PTSD. I will do so using the four main ‘symptoms’ discussed in the Picard article:
1) An inability to engage in pre-illness levels of activity that persists for at least six months, accompanied by fatigue. While generally this ‘pre-illness‘ is predominantly applied to CFS, the other conditions can be not only related to illness but are often attributed to traumatic events such as car accidents, violence and situations that cause the nervous system to go into hyper-arousal.
2) The worsening of symptoms after any type of exertion (physical, mental or emotional). This symptom, post exercise malaise, is seen as key. This symptom is highly evident in both CFS and FMS but can also be seen with MCC and PTSD.
3) Un-refreshing sleep. Therein lies a commonality among all the disorders.
4) Cognitive impairment. Once again the four dis-eases experience this to a greater or lesser extent. Also known as “brain fog”.
5) The inability to stand upright for other than short periods of time, a symptom known as “orthostatic intolerance” which is extremely common in CFS and FMS and may or may not affect the other two disorders.
While it might seem as though there is a great difference between MCC and FMS to CFS and PTSD, in fact the following is a list of the many symptoms of MCC and PTSD: muscle and joint aches and pains, fatigue, rashes, itching, memory loss and confusion, all of which are common with the other three mentioned syndromes. As with the other disorders, anxiety, panic, inability to tolerate loud noises, bright lights, excitement, highly reactive to smells, frequent digestive disorders and so on are the exact reported symptoms of all four. In short, all the mentioned dis-eases are similar to such an extent that it is difficult to differentiate among them. They remain controversial, lack any kinds of standard tests to help with treatment and have a gender bias (with the notable exception of PTSD, because of the nature of the higher number of men in the military who have faced combat). One important distinction however, is that people with CFS have been known to recover, unlike FMS sufferers.
These are all Medically Unexplained Illnesses ( my italics; also see other blogs where I have discussed this issue)with symptoms that are common to all and cannot be separated from one another. As I have discussed repeatedly, the realm of study and research for these conditions should be with the neuroscientists who have made tremendous strides with brain studies regarding pain and the brain, and various strategies for changing the brain. Among them which I seem to be presenting over and over again are: mindfulness meditation, light exercise, talk therapy, deep breathing, avoiding caffeine, and especially helpful is taking on activities that are new to you, creative, repetitive, innovative and enjoyable which will stimulate new neural pathways in the brain, and finally paying attention to situations which bring on added stress and living in as calm an environment as possible.
I liken the nervous system of those of us with all these invisible syndromes to an elastic band which has been stretched to its limit. We are never cured of this highly sensitive nervous system. Whether or not it is nature or nurture cannot be proven. We can only work with the hand we have been dealt. Almost, if not all of the hundreds of people, mostly women, whom I have heard from and made comments on this web site, or interviewed personally have been overly empathetic, intuitive, and care givers in one form or another. I have not been surprised at the number of nurses who have FMS and CFS, and gay men, as well as other marginalized people whose lives have been filled with trauma. Some say that after a period of time CFS can be cured without lasting effects. I cannot attest to that, but I can say that those of us with FMS have life long challenges. I confess to not hearing from men in the military. I can only speculate that these are highly sensitive men whose nervous systems have been stretched beyond endurance.
So it seems that the IOM has been tasked by the U.S. Department of Health and Human Services, the National Institute of Health , the Agency for Healthcare Research and Quality, the Centers for Disease Control and Prevention , the Food and Drug Administration, the Social Security Administration- all to examine evidence base for CFS. What on earth are they to do? Is CFS and FMS just now being discovered? Have they ever read any of the comments on this and many other websites exploring the commonalities among all of us world wide, suffering from these conditions which are so closely related? What do they hope to find that wasn’t explored decades ago? It is not a disease! There isn’t a cure for a permanently hyper-aroused nervous system, always on alert and hyper-vigilant. We are highly sensitive people who, like Elaine Aron discusses in her many books, are like canaries in a coal mine. ( Please note: Aron does not equate the conditions I have just discussed with the highly sensitive person; her extensive work is about the type of people we are and she does not discuss specific disorders associated with this type of person, instead she believes it is a ‘gift’ to be a HSP; the theoretical relationship is mine and I do not want to misrepresent her). We have rich and complex inner lives. We startle easily; we process sensory data differently than other people; our nervous systems differ from the general population. We are highly empathetic and often intuitive beyond what is usual. This entire trend to label us as a disease entity boggles my mind- when I am not in a state of anger. I have to remind myself to breathe…