A Personal Advocacy Postscript
Now that my involvement in the CFS Satellite Conference is completed and because of factors at this end, I am forced to step back from the advocacy arena. I hung in and contributed what I could to the conference because I felt if it could convey that CFS is a real and serious illness and that it could make a significant difference. And just as important, that it could refill the all too empty wells of hope in so many PWCs.
It was an eye opening experience for me to take part in the conference calls and other communications involved in this endeavor. I saw first hand that we patients do have some real allies in the government and how profoundly The CFIDS Association of America is working on our behalf. This isn't meant to be an endorsement for them or anyone, but rather a reflection of what I saw.
I still should not comment on the content of the conference -- I will leave that to all of you to evaluate once it has taken place.
As is expected in this type of project, there are bound to be opposing views and there are those whose perspectives we will most likely largely disagree with. But to a large degree I feel the conference does open a door to the publics greater understanding of CFS. And I hope a follow-up conference expanding upon treatment, clinical care, and disability will take place so it can further improve medical care and quality of life for PWCs.
The following pieces are not comments about the CFS Satellite Conference, but rather my personal observations and feelings after many years of advocacy and support involvement.
And may it always be said that despite CFS I could always be long-winded.
CFS - Where is the Science?
PWC Politics - a Personal Note
Chronic Fatigue Syndrome -- Where Are The Safety Nets?
People who have chronic fatigue syndrome (PWCs) are more than data points on a graph or lab rats for scientific study. They are human beings who are suffering tremendously while speculation and debates about chronic fatigue syndrome (CFS) continue.
Why can't the medical community and government officials step back from the debates and even the science long enough to see what will really help the PWCs right now? Since they, by their professions and positions are supposed to be doing this, why have they sidestepped what would help PWCs most right now?
Individual physical symptoms can in some cases be treated to some degree -- in other cases little helps. But the physiology of the illness while terrible to live with is only one of the factors that are destroying the lives of PWCs -- that are taking the lives of PWCs. And in many cases the physiology isn't even a factor.
Having to prove one's disability without the strength or resources to do so, when the deck is stacked to their disadvantage -- that is destroying lives. Why is the Social Security Administration still allowed to discriminate so blatantly against PWCs? Why haven't those in Congress and Health and Human Services who oversee the SSA mandated that changes be made?
Why have most of those in government and in the medical community avoided involvement in CFS public relations? I'm not speaking of them being involved in CFS advocacy because that would in some cases create some conflict of interests. What a government official is and isn't allowed to do is strictly regulated.
But they alone, the doctors and government officials have the power by their very positions to shatter the myths about CFS and return some credibility and hope to those who suffer from the illness. They alone have the ability to influence change that will decrease the economic and emotional hardships experienced day in and day out by so many PWCs.
Dealing with the illness CFS is like treating a patient -- you can't just treat one part of the body and ignore the rest. The physician used to be taught that clinical care meant treating the entire patient, not just the body. While doctors conduct checkups in examining rooms and conduct research in their laboratories, the public keeps hearing and reading myths and speculation that continues to color public opinion, understanding, and in turn public support for those who have CFS. And please note that "the public" isn't just all those faceless millions out there, but individual family members, friends, colleagues, and yes, even other doctors who are unsupportive and even turn their backs on so many PWCs.
Something as simple as understanding could have an immense impact on PWCs ability to get through each day. And with understand there would likely be more support and assistance. With understanding there could be real hope. And in the black bag of treatments, hope is the only universal treatment that will keep PWCs going until more effective medical treatments are found.
Where has the American Association of CFS (AACFS) been other than in the debating halls of a conference every two years? Part of their charter is to educate the public about CFS and yet they have been largely silent and have all too often yielded to what was politically safe. Is it that the AACFS is for all intensive purposes run by and controlled by researchers who get their funding from the government? Is it that they do not dare to bite the hand that feeds them? If they are not going to take on the very goals they set up for themselves then some other medical group, a clinical medical group, should be formed to do so and be supported by the patient population so they can do so.
And where is media responsibility? The media occasionally covers a little medical news about CFS in the middle pages of their publications or in a few minute medical clip at the end of the news. But all too often coverage has to do with sensationalism based on false myths, flashy headlines that will grab the reader or TV viewer. Again, where is media responsibility and the all too often lost art of journalistic investigation to uncover the facts, to check with sources and to investigate opposing views without imposing their own bias? Sensationalism may sell publications and grab TV viewers but it also destroys lives, lots of lives every time it happens. The media could make a huge difference in the lives of millions of people who have CFS if they would pick up their journalistic tools and look at the real science pertaining to CFS and what the illness does to the lives of those who have it.
Chronic Fatigue Syndrome -- Where Is The Science?
While people debate and speculate about the vast unknown of Chronic Fatigue Syndrome (CFS), lives are being destroyed by it,. Too many CFS lives are shriveling up like old grapes on a sun drenched vine while some of those who could make a difference bask in the sunlight of temporary medical recognition.
Some medical and government researchers speculate and theorize about the unknown. Speculation may be the source of what becomes scientific exploration, but it is not science in itself. Throwing forth theories of psychiatric causations of CFS or that psychiatric illness is a primary factor in CFS just because there isn't enough understanding of the illness and it's physiology isn't science.
I don't say this lightly and I don't mean to throw out the baby with the bath water. There is no doubt that CFS with all its impact both neurophysiologically and emotionally does often produce psychological impact. And there may even be neurophysiologic similarities or overlap between CFS and various kinds of neurophysiology involved in some psychiatric illness. But this isn't to say that they are the same.
The neurologic system and the immune system may be tremendously complex, but they have very limited vocabularies with which to express themselves. Because of this, many kinds of impact upon them may be expressed with the same words. To say that CFS is or is caused by a psychiatric condition because in some ways they express themselves similarly is like saying CFS is the same as stroke, AIDS, Alzheimer's or a broken leg.
As a side note I must say that it's very sad that psychiatric has become in the eyes of some a dirty word. It's not. Whether an illness has origins in the brain or in the kidneys it's still an illness. So to have therapy, counseling and CBT become dirty words to some. This to is a shame, for they can help considerably in coping and lessening the impact of this illness. That's not to say that they are cures and shouldn't be seen as such. Instead they should be seen as one more tool to help us get through our CFS days.
Also, psychiatric and neurophsychiatric research must be done on CFS and should be seen as no less necessary and no less positive than any of the other kinds of research being conducted on CFS. The reason I say this is because the underlying answers to the cause of CFS seem to lie somewhere in basic science -- in the expanse of not yet understood science. The best way to uncover that understanding is to approach it from all directions rather than relying on singular narrow excursions one at a time.
Science is the a systematic methodology of finding fact with all sorts of checks and balances. It's slow and precise, but it must be unbending. But interestingly, science seems to mean different things to different people. Speculation, particularly if it comes from a well known name, in some peoples' eyes interestingly becomes fact as soon as it appears in a peer reviewed medical journal. And yet those same people will tell you other information published in those same journals isn't fact until it can be duplicated and triplicated in laboratories, until there is a means of physical measurement, something can be seen under a microscope.
What we have is tag teams of scientists that each support their team mates in the medical-political ring. This sure isn't serving science or the patients who have CFS and in many ways is indirectly contributing to the hardships patients go through.
Can a black hole be seen through a telescope? No. Only the absence of light and other matter can be seen and yet in time we could prove and accept that the black hole is real. The same metaphor applies to CFS. While scientists search for a marker unique to CFS to prove its existence, must we wait and allow more and more lives to be destroyed?
Why can't we say, "Understanding -- to be continued" and accept the fact that CFS is very real, that people ARE being very disabled by it, and rally every resource possible to help people suffering from CFS? Why must old debates that have long been disproved continue to fester and continue to impose hardships. Why is anyone listening to self-proclaimed experts who have direct connections with corporate entities that only wish to protect their financial assets? Why must people with CFS (PWCs) still be forced to jump through hoops of fire to prove they are disabled? Do we make stroke or spinal injury victims walk unaided and fall down to prove they are disabled?
PWC Politics -- A Personal Note
It's very understandable and justified that PWCs are frustrated and angry because of the discrimination, disregard, negative politics, and media sensationalism they face while suffering so greatly. What is unfortunate is that some direct that anger within their ranks largely due to misinformation and misunderstanding rather than directing it where it deserves to be placed and directing their energy where it will do the most good.
It is a shame that a small number of individuals are bent on directing anger and incorrect information at CFS groups largely to support their own personal needs and agendas. This infighting does as much if not more to destroy PWCs' hope than anything else. I hope the PWC community will find the way to open the doors of communication so that energy can go in the directions that will do the most good for all PWCs rather than feed the needs of a few. Also, any individuals who would so willingly reek havoc on another CFS organization or upon individuals in the CFS community should not be trusted or followed -- for such activities will only close more doors than it opens.
What the CFS community needs to do is communicate amongst themselves, utilize strategies that have worked, all be it too slowly, and find new strategies to get to those who can bring change. Ripping down the inner supporting walls of a structure only makes the entire structure collapse. The CFS community needs to build on the structure it has.
The only way we are going to achieve real progress is to build bi-directional bridges of cooperation between the PWC community, the medical community and the government agencies. As frustrated with some of the HHS agencies as we may be, no amount of anger or activity is going to make them go away. We need to find ways to make the system work.
The same can be said for building bridges between the patient organizations. None of these groups have done everything right or everything wrong -- that's not humanly possible. But if all these groups agree to disagree on some matters and work together on other matters progress can be made. One doesn't get through a locked doors by trying to kick them down. That only works in the movies. If the CFS community can't even accomplish these things, how can it hope to find something as elusive as the cause or an effective treatment for CFS?
Please remember that the very fragile hopes of millions rests in the hands of a few and with that comes a tremendous responsibility.
If you've gotten through all of this and feel any of it is worth passing along to others, please feel free to do so.
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