To Whom it May Concern,
At first when I tried to start writing this, I worried that there was no point. What purpose is there is writing about a problem without having any kind of conclusive solution to end with? As an English major, I am used to making everything add up into a moral and end my papers with a rallying, exclamatory paragraph that I treat like a key to all problems in the world. I pretend that my insights have clarified more than just the novel I was writing about.
I recently wrote an article on Chronic Fatigue Syndrome because a professor at Stony Brook University has received a grant for the research he is doing on a home-based treatment program. I brushed up on who he is and got a general idea of what his program is about. I learned what I could in a space of about two days and formed a vague idea that I agreed with his outlook: if people are too ill to leave their homes in order to get treatment then a program designed to be performed by oneself in one’s home is a good solution.
After the article was published online I began receiving emails telling me that people were commenting on my story. I was startled to see a less than subtle common thread running through the responses. A majority of the comments were from people suffering from CFS, and every one of them demanded to know why the National Institute of Health was funding another of this “type” of project, as opposed to aiding those who are researching a biomedical treatment option. In other words, they stated that yet another program to make their symptoms more manageable was not the cure they called for.
Clearly, my thorough research had left me without an important bit of context. The comments made reference to other treatment programs that had similar goals to Professor Friedberg’s, including a trial in the UK that, the commenter proclaimed, was unsuccessful. Another response speculated that perhaps more funding would be given to finding a cure if CFS were seen as a cause of death.
I don’t suggest that I am an authoritative voice on this issue. However, I was blown away by the vehemence of the reactions my article provoked. I had the humbling experience of realizing that my ability to peek into another person’s reality, write 500 words on it and be done with it, was my luxury. I modestly stand by one of my initial reactions that perhaps both treatment types should be funded, and that Professor Friedberg does not intend his program to be a permanent substitute for a biomedical cure. I recognize that there must be an unfathomable level of frustration felt by people whose lives are altered by CFS and believe their voices to be unheard, or even ignored.
I was reminded, perhaps simple-mindedly, of another research project I had done on autism. In my studies I found a book called “Emergence: Labeled Autistic” written by a woman with autism who presented an outlook radically different than anything I had seen before. She suggested that children with autism should be looked at as having a different perspective, rather than an illness. She was a major activist for a school of thought that dismissed studies for cures of autism as being narrow-minded, even cruel. I was 14 at the time and perhaps the idea of a societal outcast being defended resonated with me. I interviewed one of my teachers who I knew had an autistic son. When I asked what he thought on the matter he looked at me strangely and said that he would do literally anything to find a cure for his son. I will never forget the words he wrote over his picture in my middle school yearbook: “find a cure someday.”
At first when I started this piece, I felt unsatisfied with the fact that I would not be able to come up with a neat resolution to the problems I would present. I felt that if an issue has no clear arrows pointing to a reasonable fix, then why discuss it in the first place. Won’t I just be spewing words? The importance, I now realize, lies in whether or not those words are heard.
Sincerely,
Marcela Maxfield
Marcela Maxfield
Latest posts by Marcela Maxfield (see all)
- Review of Squirm Burbee: A Vaudevillian Melodrama - November 15, 2011
- Letter on Chronic Fatigue Syndrome Concerns - November 14, 2011
- Stony Brook’s Friedburg on $600,000 Grant for Studies in Chronic Fatigue Syndrome - October 31, 2011
Thank you.
You wrote the first article with what you knew. And now you have learned from the feedback. However, I wish it had been less angry.
Having CFS myself, I understand the frustration of my fellows (I nearly said my people, but you would not have seen my Evita-like (from the movie) hand motions which I use to make people smile). Discourse is one thing, but negativity…
Does not the world suck enough? Why add to it. I prefer discourse and humor. It adds to the positivity in the world.
And it keeps my tears of frustration under control.
But back to why I commented: You wrote an article, you have received feedback, and you have learned and moved forward. Let that be enough. Leave the negativity behind.
My CFS, fibromyalgia, etc. are enough baggage. I try not to carry the negative.
Thank you for your article, and this letter. Please continue your work.
-Eridanus Darryl Kummerow
Yes, we are angry and fed-up because CFS sufferers have been ignored, even ridiculed, for such a long time. Unless, you or a family member has this illness, you cannot begin to imagine how devastating it is. An immune system in overdrive can be just as horrific as a poor-functioning immune system.
A new study out of Norway supports the theory that Chronic Fatigue Syndrome is an autoimmune disease. Cancer, HIV and diabetes are more likely to develop in people with poor immune function. I have no more control over my illness (CFS) and my hyped-up immune response, than a cancer patient does over his/her poor-functioning immune system, which may have led to their illness. Postitive thoughts, CBT and meditation may be beneficial for both CFS and cancer, but will cure neither. Exercise in fact will only exacerbate the symptoms of CFS. Exercise is designed by nature to stimulate the immune response, which is exactly what you don’t want to do to a CFS sufferer. What we are looking for is for some serious biomedical research which may one day lead to a cure for this terrible illness.
Rachael I agree with you 100%.
Marcela, I’m sorry you waded into this minefield unawares, but thank you for your humane, mature response to the experience. Yes, there is a lot of anger in our patient community. And the truth is that we all do enormous amounts of “self-management” at home every day of our lives, learning what works for us through trial and error. It isn’t too likely that this researcher will come up with something new that helps us. Since self-management at home is all that many of us have to rely on, it is galling to see money spent on this research, when what we all wish we had was a decent doctor with knowledge of the illness to help us through, or, better yet, good biomedical research to offer us hope for the future.
I hope you will continue to learn about our illness and write about it. It will be hard to sift through the bad information that is out there, both from “expert” sources and from patients with pet theories about causes, etc. I refer you to the excellent recent International Consensus Criteria on ME (for myalgic encephalomyelitis, the international name for CFS), published in the August 2011 issue of the Journal of Internal Medicine. The authors of this article are the top doctors for ME/CFS patients from around the world, and the article has a clear definition of the disease. These doctors would be excellent sources for you. I can particularly recommend Drs. Klimas, Bateman, and Bell, since I am familiar with their extensive work with patients. Good luck!
Dear Ms. Maxfield,
I am sorry for any abusive emails you might have received, though to your credit you seem to have looked past the vitriol and considered whether there was any underlying substance to the complaints. This is a very valuable quality to possess and/or make use of, and again is very much to your credit for doing so.
The problem here is two-fold. First, the main issue is that ME/CFS can be a very debilitating disease which can leave sufferers house- or even bedbound for life. While, as you say, behavioural therapy might be of some use in the absence of biomedical treatments, the behavioural therapies in question have been ‘done to death’ yet keep receiving funding in the near absence of funding for biomedical treatments. For instance the recent PACE and FINE trials in the UK received something like 6 or 7 million pounds, whereas at the same time there is absolutely no government funding whatsoever for biomedical research in the entire UK. This is what patients are upset about. Also, the results for these types of therapies are almost always the same- patients report marginal improvements on subjective reporting measures such as questionnaires, with no improvement whatsoever in objective measures of function such as actometer data, tests of cognitive function, etc. It’s the same thing over and over again.
The second issue is one that is a little more tricky. In the UK and the Netherlands, there are groups of psychiatrists with close ties to the medical insurance industry who have claimed for the past several decades that ME/CFS patients simply suffer from ‘dysfunctional illness beliefs’, with the ‘dysfunctional illness belief’ in question being the patient’s belief that they are suffering from an organic disease process, not that they actually have an organic disease. These psychiatrists then go about trying to ‘cure’ patients of these supposed ‘dysfunctional beliefs’ with what they call ‘CBT’. While Prof. Friedberg does not practice this type of ‘CBT’, and even explicitly argues against it, ‘CBT’ in any form has understandably been given a very bad reputation for ME/CFS patients.
From the Manual of cognitive behavioural treatment for CFS by Chalder, T, Deale, A, Sharpe, M, Wessely, S, 2002, in conjunction with the PACE trial- “CBT is based on a cognitive behavioural model of CFS. According to the model the symptoms and disability of CFS are perpetuated predominantly by dysfunctional illness beliefs and coping behaviours. These beliefs and behaviours interact with the patient’s emotional and physiological state and interpersonal situation to form self-perpetuating vicious circles of fatigue and disability…The patient is encouraged to think of the illness as ‘real’ but reversible by his or her own efforts’ rather than (as many patients do) as a fixed unalterable disease.”
So imagine that you were severely affected with a poorly understood disease to the point of being housebound and dependant on spouses, children, parents, etc. for you basic needs. Then imagine that there were a group of psychiatrists who are despised in the patient community for thier lack of understanding and/or consideration of the biomedical research into the disease who had been going around for the past several decades saying that ME/CFS patients could become ‘recovered’ if they would simply stop imagining that they were sick. As you probably experienced first hand, there is a significant amount of frustration and anger at these individuals in the patient community as a result of this, with this anger and frustration sometimes resulting in bystanders such as yourself being caught in the crossfire. Since you mention writing about autism, perhaps consider the plight of parents of autistic children who were once told that they were the cause of their childrens’ illness as a result of being too emotionally distant, ie the ‘refrigerator mother’ theory of autism. This is very similar to what is being imposed on ME/CFS patients today- ignorant psychiatrists spouting complete nonsense.
For an example of research that patients would like to see more of, one needs look no further than a recent study from Norway on the use of the anti-cancer drug Rituximab for treating ME/CFS patients. The authors of the Rituximab study state that since there is a global improvement on all ME/CFS-related symptoms in those patients who respond to treatment, they think the drug is working on a very fundamental level, ie potentially the cause of the disease itself. Due to the delayed response pattern, they are studying whether ME/CFS is actually an autoimmune disease. http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0026358
Thank you for your revisiting the issue and for your openness to consider others’ points of view. All too often when people who write on the issue get ‘caught in the crossfire’ as you apparently did, they simply become more entrenched in their views and some will even take sport in provoking ME/CFS patients further. Your ability to consider other views than your own will undoubtedly serve you well in the future.
Regards,
John Mitchell jr.
This is so beautifully put, John. I have rarely read something that describes what I call the “gaslighting” of ME/CFS patients so clearly (from the movie “Gaslight,” in which a man tries to drive his wife crazy by denying the reality of her perceptions). Thanks!
“dysfunctional illness beliefs” That’s ill in itself…Oh and John, well put. I enjoyed the read
Dear Marcela, you may write a good story but you are obviously incompetent (or lazy) as a journalist and to me your “opinion” above is damned by your use of literary license (i.e. lying) when you said, “you learned what you could in a couple of days” because if you had just googled DR Fred Friedburg you would have quickly noticed that he is the president of the International Association for CFS/ME and if you had bothered to read just some of the letters on the home page of this association website, that Fred has written as President, you would know what you are talking about. Your poorly researched article definitely did not reflect Fred’s “outlook” especially on the ‘similar trial in the UK’, and if you had done a better job at learning about his outlook and portraying it – the reaction would have been different.
Hence from your over use of literary licence re you doing research on Dr Friedburg; I suspect your story re your teacher and autism is probably fiction.
The vehemence sadly reflects the suffering and neglect. People are not just “affected” by CFS like hay fever or something, people’s lives can be destroyed. Young people can find themselves bedbound too weak to even have visitors. Whilst their lives are ruined, careers ended, social life cut, the dream of having kids over, the UK and USA government turn down funding into biomedical research and fund Dr Friedmans type instead. If it hadn’t already been done before there would be some justification but it has so there isn’t. I read that in the USA state funding for CFS is actually on par with hay fever! One of the lowest funded conditions yet so potentially devastating & long lasting causing a level of disability on par with MS and heart disease.
its incredibly sad that you are right.
CFS is not only extremely difficult to deal with because of it’s disabling symptoms, but its impossible to measure the pain it causes when people don’t believe you or help you. When someone has cancer people rally around them. That brightens peoples spirits. People with CFS are told they are not sick. They are told they are lazy. They are told to work through it. It’s one thing to be sick and have the support of Doctors, friends and family. Its another to be sick AND to be looked at with doubt. I pray every day a cure is found for this nasty disease that has shattered peoples lives.
I very much appreciate the reflective reaction you offered here, seeking out the source of people’s anguish, rather than responding to the excesses you say you experienced. It is yet another example of how RATIONAL faith/trust is badly needed (not an oxymoron) in this world.
Thank you for adding to the discussion of CFS. As a patient of this dreaded disease for eight years, my own opinion is that the more discussion the better, the more research the better, the more options for treatment… the better.
Just as my family doctors have been befuddled when psychiatrists have said this is a medical problem and that I should be taken off of antidepressants and any other psychotropic medication, I feel confident that the more research that is done (even in the wrong direction) will eventually reveal that CFS is a medical problem that will require biomedical research and solutions.
Dr. Eric Kandel (currently at Columbia University)is the only US psychiatrist to win the Nobel Prize. He won for his work on the concept of central sensitization. In doing so, he revealed the physical phenomena (in the CNS) behind certain animal behavior. He continues his work by insisting that legitimate psychiatry should be able to identify the physical process behind human behavior. He even believes that psychoanalysis (if legitimate) should be able to identify changes in brain structure or chemistry.
I mention this as a CFS patient who has changed his opinion of CBT. While I do not believe that CBT can cure CFS, I do believe that CBT can alleviate damage that has been done to the CNS by the adverse effect of the immune system on mitochondrial function.
Medical advocates of CBT must realize that the therapy is meant to help repair the damge done by disease (just as physical therapy might be used after surgery). At the same time, CFS patients can avail themselves to the benefits of CBT to repair damage to the CNS prior to a biomedical solution (just as physical therapy is sometimes used in an attempt to avoid surgery).
And CBT does not have to be done by a therapist in a medical setting. Choose any activity that engages the brain and peripheral nervous system. I have chosen to learn to play the guitar. The process of using the brain in conjuction with the peripheral nervous system will have a positive (and real) effect on correcting damage done by the disease. Even better, it is a positive and enjoyable experience in my life. Pick something you enjoy and take it slow.