CDCs Chronic Fatigue Syndrome vs. BFS/PNH

[SirTrouserz]

In searching for information regarding syndromes, I came across Chronic Fatigue Syndrome and a wealth of information about it by the CDC. The CDC lists symptoms, support groups, treatment options, colorful brochures and current research. They have age and demographic information and much more. It makes me wonder why BFS/PNH doesn't get the same treatment by the CDC. There is no one test to detect or a single known cause of CFS, so it seems we have that in common. It appears to be a complicated syndrome with many suspected causes that can cause a lot of anxiety for the person who has it- more commonalities.



I wonder why this condition is seemingly taken more seriously than ours? Is it just that more people have it? Maybe BFS/PNH is under another catagory that I am not familiar with, but I couldn't find it listed. I never got a brochure or any info from my neurologist, just a "Don't let the door hit you on your way out, to your psychiatrists appt".

I really think this needs to change and that it would help a lot of people if more information were put out there for everyone to see.
Sir_Trouserz

 

[stevenpaulo]

Simply put "numbers". CFS is far more widely known than BFS/PNH. Ask people if they've heard of CFS and it's likely they will have, ask them if they've heard of BFS/PNH and you'll get a blank look. Furthermore, to some degree. the same would apply to the medical profession At best you might get a diagnosis of BFS and if you're lucky, based on their own thoughts, some vague explanation as to cause, but that's about it.

Until this condition of ours starts to make it into the Dr's office in increasing numbers (doubtful), then it will warrant little attention and remain relatively unknown. What research is available is only published in medical journals or through the web and I don't think we can expect Dr's and neuro's to be aware of what is on hand. Support groups, colourful brochures and demographic information while a nice idea, are nowhere on the horizon.

The most likely category you're going to find BFS/PNH is under neurological conditions or hyperexcitable syndromes with the reference to Neuromyotonia being the nearest.

For the long term future we will have to accept that we are members of a fairly exclusive club where there is no waiting list or annual subscriptions and membership is likely to be lifelong. In the meantime our PN system will continue to be creative of it's own accord.

 

[SirTrouserz]

Why shouldn't we expect neurologists to be more aware of BFS and have some helpful information when we go in? My neurologist said that BFS is the most common source of twitching. That's where we're sent. Some neurologists see a few BFS cases a week. I think it's ok to expect more from them than most of us are getting. I think it's their job to know more about it if they are seeing us frequently. Even if the cause is unknown I would have like to have at least heard that much.

My problem with the 'numbers' issue is that we have no idea. We have no idea how many peeple are getting diagnosed each week or even if the numbers are increasing every year.

I think that a good part of solving medical mysteries like this often lies in patients asking for more information and speaking up about the problems they face. It's a two part process. We have no idea how many people never see the doctor because it's can be such a terrifying experience. Getting an EMG was one of the most difficult things I have ever done. I had a very difficult experience and I feel like, if I don't ask for more on my own behalf, then who will? CFS was thought to originate from anxiety and personality disorders at one point. Did the CFS members speak up?

The websites we have are wonderful- lifesavers- but I would also like medical recognition of our problem. Maybe I'm alone in this, but I would really like a better understanding of what makes the members of our club so special.

 

[EyeoftheWild]

I had CFS, it wasn't fun. I woke up tired and angry every morning. I gained weight, found sex a complete trial, and felt like my life was going down the toilet. I lost my career because of it, and felt a kind of low-level depression all the time. I was even told that it might be cancer at one point. Hey, if you go to enough Drs. it is bound to crop up. Anyway, I went to a Homeopath, who was also an MD, and he got me over a bad hump, but I was still energy-less, and thought that my life sucked.

Now I have BFS, and of the two I prefer bfs big time. Why? Because the bfs stimulated me to make changes, or rather became the conduit through which my spirit sprang forth. Bfs made me realize that life was fulcking worth it, that I was worth it. I cried my tears, freaked my freaks, laughed my laughs and then loved my loves.

Illness, in general, is an illness of spirit, not of body. That is why it manifests itself so differently, yet consistently in so many people. I'm not talking about religion either. I am talking about that which makes you alive...the universal spark. My bfs was as bad as anyone, and I was already chronically ill, depressed, or whatever you want to call it. However, what ever miracle shook my brain and rattled my psyche, showed me that I shouldn't be looking at what was lost, but rather what could be.

I began to flourish. I began to look forward to twitching, because these fasciculations proved that my life was worth something, that the goals I had suppressed need not remain so.

Well, you may say, "hey, I was cruising along quite happily, and then bang I got bfs, so I don't believe you." Fine, if you don't believe me that is your prerogative, and you may well be right...I don't know. However, my feeling is that this was our spirit literally shouting at us to "make a difference." Make a difference for our own dreams, make a difference to world even. Do you think change is brought about by those who live in a cocoon of their own rationalization?

Okay, you ache, you cramp....me too, but not as often, and not as badly as I did once before. I even got the flu this year, and if you would have seen me hunched over, barely being able to walk you would have seen a sorry sight, indeed. The burning in my legs was so intense at each slight movement that I almost made my first post, in a very, very long time, about how I was afraid. But, I kept telling myself, "Basso, this set back is a chance for more spiritual growth...see it as such." I emerged stronger, and felt a deeper sense of what I had gleaned at the beginning of my bfs experience.

I will not let any of you off the hook, I have too much affection and respect for you to do that. I am here for you, and will listen to your travails, but I will encourage you every time to look beyond these physical struggles, so that you might identify the spiritual ones.

I also believe the real fear, the fear we all struggle with is just what might happen if we embrace who we really are. If you did what was really in your heart...what would you do? You might leave a spouse, you might go off to India to help the poor, you might quit your job to pursue what you really love. Questions, the questions that you dare not ask even in the privacy of your own mind can spin you around the universe.

Basso

 

[SirTrouserz]

Basso you always give us a lot to think about.

I want people to know about BFS. I want neurologists to not send us packing without some explanantion and treatment. I want people out there to know that if you start to twitch from head to toe, it probably doesn't mean you're going to die, even if you feel like you are. I want people to know that BFS is the most common cause of twitching and not all those other awful things we're familiar with. I want to know if BFS/PNH is increasing in numbers and what's causing it. I want us to fix what we can and make public what needs to be said.

When my twitching really began, I had finally gotten a very hard-to-get job at an ivy league university as a research assistant here in Philly. I had to go through a total of five interviews and alot of other nonsence I won't bore you with. I got the job! Then, my son and I started to get sick over and over and over again resulting in many missed days work this winter. My boss was unhappy, my son was sick, my dog (17 yrs old) died and my brother was in and out of the hospital. And all I could do was wonder why the universe didn't want me to have my chance at success. I commuted to the city in the worst days of winter sick as a dog. I was determined to get the training that would help my career and give me the opportunities I have been wanting for so long. It had taken me a long time to get my degree and, since I mostly been on my own since age 17, I've largely done most things on my own. This was my chance. Then, it ended up the grant money wasn't there for my job after all. They would have had to let go of several full-time workers to fulfill their commitment to me. There were terrible personnel problems at work. I had to take more time off because I had to see a neurologist and get my MRI, EMG, etc. I couldn't make the twitching stop and I was scared beyond words. I had to quit and felt like a complete failure although there was almost nothing more I could do at that point. I am trying to rebuild from that disappointment.

So, now here I am, an unemployed research assistant, stay-at-home mom with a mystery illness that's untreated and unknown. I twitch every day and wonder, Why am I twitching? I read the sad posts everyday from people scared to death and wonder why I never read about BFS anywhere. Would it help if more people knew a benign neurological condition actually existed? Why is it in the shadows? I want us all to band together in one big twitchy mob and say "No more! We deserve medical treatment!" Twitchers unite! Ok, now that would be a little unsightly, but you get the idea.

Basso, you're one of those people who makes life more interesting and thought provoking, but at this point I would be happy with a color brochure, a place on the CDC website, a little neurological respect and some articles in the paper. Is that too much to ask?

 

[beensuggested]

Here is a little background history with CFS/FMS. When I started practicing 16 years ago, by the way graduated med school a 9 , Doctors viewed CFS and fibromyalgia as "in your head". It was a "garbage pail" diagnosis, or it was a psych issue. I was one of the first practitioners in my area along with my dear friend and a rheumatologist a few towns over who would even treat these people. The recognition of these conditions and the subsequent research has occurred over a long period of time. We do have a study by the Mayo clinic for our condition and there seems to be more research occurring in the UK. So, I think we will get there, I really do. It is really about numbers. I have patients who present to me with weakness and pain and numbness etc and I ask them all - now , do they twitch. I have only had one patient tell me yes and describe very much what we describe. Many other do not even recongize any twitching. Truthfully the more of us that present to docs, the more likely this will gain some continued attention so we can get the color brochure

The worst part of this for me was not knowing of anyone else who had this and not really having a name for it. I have definite "control" issues and everything about this took away my control. I would listen to myself speak about things I was doing and I would hear myself say I "have" to do.... So Basso, I agree sometimes you need to also look at what makes you run...and how much you really "have" to do. I think most of us on this site are "control" people or people that "take care" of things. So if you are always running....isn't there some type of karmic giggle that this forces you to stop but your muscles keep going??

I too hope that this condition will become a little more recognized so that hopefully no one else has to go through those dark days. Maybe there will be a "cure" maybe not but I know each time something happens in my life, especially when they are things that I myself hadn't planned, I learn a new lesson. I have learned alot lately

Sir_Trouserz, I do feel your frustration. I hope that things get better and settle out for you and for all of us. Who knows maybe we can do a group photo for the color brochure )
Kit

 

[hCapitalize]

Yes CFS or ME has been like chronic back pain, something that cannot be easily measured or detected therefore it has been dismissed.

Indeed Carpal Tunnel syndrome has also suffered much the same abuse under the heading of RSI as a malingers charter.

I am glad we are getting away from all of that now.

 

[JosiahManning]

Thanks to all of you for some very thought provoking dialogue. This website has been a Godsend for me. I too hope that more information surfaces about BFS as a diagnosed/diagnosable condition. My neuro, in the 10 minutes he was willing to give me (in his defense he is very busy trying to help people that seem a lot sicker than me) last week told me that I was having some form of "benign fasciculations", but he did not go so far as to call it a "syndrome". His conclusion: "you are doing okay; now get on with your life."

And, now I have to make a confession along the lines of what Basso--an exceptionally talented and inspiring writer--was saying. Here until very recently I thought I might have one of the most dreadful of awful diseases. I now finally believe, in my heart (and in my head), that I do not. I have this benign syndrome instead, and its no fun. But, for much of the last two months I really believed that I would not get to watch my two young boys grow up--to teach them and mentor them--to go out and explore the world with my wonderful wife. Instead I would be a burden on my wife and a distant memory for my kids. The thought of what I was going to lose was crushing. I had so much left in my life to accomplish, if only to be given the chance to accomplish it.

And now I know that it is still out there waiting to be accomplished. Yes, I still twitch (my left bicep was giving me fits today), and my exercise tolerance is somewhat diminished (can't run as far or as fast), and my reflux continues to give me trouble, but you know what, I'll take it--ANY DAY! All of the things I just described are unpleasant, but not terribly so. My life continues, and I get to steer the ship.

My scare with ALS has taught me that we take so much in our lives for granted. Just being alive to be with those you love, to go for walks, to watch a sunset over the ocean or fireworks on the 4th of July. Yes, I have stress, and twitches galore to accompany an intermittent globus feeling in my neck, but I now appreciate more than ever before that I am incredibly lucky. If I live one more year or 60, I want to make sure that I am living every bit of it to the fullest. So, Basso, I don't know how you managed to turn things around the way you did, but I find your outlook inspiring. I've got BFS. Maybe it will go away, and maybe it won't. Either way, I plan to stick around for awhile, and live--and love.

Best wishes to all of you,

J.

 

[ZekesTraveller]

The made progress because they stopped saying it was benign and in their head aka anxiety. WOW now there is actually a physiological cause.

Positive thinking is great but it has never solved a single problem except in philosophy.

If we keep this benign thing up in 20 years we will still be posting things like think positive...that will cure you. CFS will get a cure because they took action today instead of simply thinking positive.

 

[SirTrouserz]

Two things Zeke:
1) What do you think we should do to improve treatment of BFS?
2) Positive thinking does make a defineable physiological difference in our health. There's been a lot of scientific evidence that stress worsens many medical conditions and that people with social support live longer and get better sooner from numerous illnesses. The body and the mind are inseperable. That doesn't mean that there's not an organic cause to our syndrome, but how we feel and think definitely affects our physical health.
Let me know what you think,
Sir_Trouserz

 

[SirTrouserz]

Basso,

Glad you brought up the statistics, because here are a few things I thought were interesting. I wanted to see where BFS members lived, so here are some rough estimates from last week:

Location Not Listed 64.00%
US 24.00%
Various Other Countries 6.00%
UK 4.00%
Canada 2.00%

It was challenging to do because of the way we list locations on the site. The biggest surprise to me was how many people don't even list what country they live in, let alone city or state. What would that indicate?

I guess it's not surprising to find out membership by state in the US is associated with population. The larger states have more members than the smaller ones.

California 2.00%
Florida 1.20%
Illinois 1.15%
NJ 1.01%
NY 1.94%
PA 1.70%
Texas 1.57%

Lastly, here are some of the other places where there are BFS members reside. Please forgive my lack of geographical knowledge if they overlap, etc.

Anguilla
Austria
Brazil
Belgium
Bosnia
Christmas Island
Colombia
Crotia
Dubai
Finland
France
French Polynesia
Egypt
Israel
Italy
Germany
Greece
Guinea
Holland
Japan
Kuwait
Liechtenstein
Lithuania
Mexico
Netherlands
New Zealand
Norway
Niger
Poland
Saudi Arabia
South Africa
South Korea
Spain
Sweden
Switzerland
Uganda
United Arab Emirates

Quite a representation even if there are only 1 or 2 people living in these locations.

There was also someone hailing from Twitchville, USA, which I don't think exists, but would be a great place to have our BFS conference if it did. There were also 2 people from Planet Earth, 1 of whom was named Morris_M. That's ridiculous because everyone knows Morris_M was from Ork .

Thank you for the positive encouragment Basso, in all regards. You and Zeke should try to play nice however, as there arn't all that many of us, and there is power in numbers.

We all know improving medical treatment doesn't necessarily have anything to do with medication either. As you mentioned, the way a doctor chooses to interact with a patient involves either positive and negative thoughts. Being able to recognize a syndrome and explain it to the patient would be a nice first step for us. That happens way too infrequently.

Happy Friday the 13th everyone! Maybe it will bring good luck.
Sir_Trouserz

PS Basso, did you happen to edit your comments from earlier?! There are some things those raised catholic like to talk about more than others. I was raised catholic, too. I should have guessed

 

[ZekesTraveller]

I am not saying thinking positive does not help you get through hard times in anyone’s life. It just does not cure anything without action. My suggestion remains the same some real action like helping fund research and pushing our agenda but as long as this naive notion that positive thinking ALONE will solve anything will condemn us all too living wit this condition with no progress while every other illness gets serious attention. Maybe in my lifetime no cure will be found but it could help someone down the line.

Bassos please understand that I do not come from a liberal arts background so I am primitive in that fashion. My mind works in logical steps not wishful thinking. I am glad that this method has worked for you but it does not work for everyone else. To me it seems that every time someone posts a concern you make it a joke as if you wanted to limit any further serious discussion. Why is this? Are you for real or a you trying to kill the discussion?

I also see that you have been at this for very very long and understand that for you this may be a nothing matter but it is not the same for everyone. I want a real medical look into this illness. I have also expressed that people keep an open mind and learn to deal with this illness but making jokes does not help because it limits real progress and reduces this illness into a joke. It makes people think that just living with it is OK and that they should not participate in some action or demand research. This exact behavior is why CFS never got any respect in the past because it was suppose to be in the sufferers mind only!

Alive and Twitching
My goal is to have real participation into research and a cure. I guess you could call that positive thinking if you wanted. Besides there is also vast research that says stress makes us stronger (exercise, reading writing, arithmetic etc etc). And I ask what can us as communities do to help get the ball rolling for a cure? Maybe EyeoftheWild can be the comedy act to sell tickets. That's OK with me because everyone needs to play a role. But a real effort needs to be made. Our emotions are chemicals in a certain balance not some flight of fancy or tutu vision of the world. The fact that you can reduce a human’s emotional response by chemicals dictates that positive thinking is great but still solves nothing if it is not coupled with real action and determination.

I am getting sick of bringing this up and I really can't do it without the rest of you! But I guarantee you that as time passes we will be in the same place if we reduce this illness to a joke every time someone brings a concern for replies.

There are two choices

1. Think of this illness as a joke
Or
2. Help with research, funding and POSITIVE thinking toward a cure. Once we get that kicked of we can start cracking jokes to get awareness. Basso could be our Jerry Lewis. After all Jerry does bring in some real cash year after year!

I realize that one person alone can do nothing. That is why I ask for your help. Maybe in this fashion you and I would no longer envy CFS and EyeoftheWild could crack jokes all day long. Powers in numbers is the exact thing I want. You as well as I know that simple jokes will get us nowhere. As Caesar say we need harness the power of the pack! Is that a joke!

"have you thought of helping with the global warming issue? JK " This is the kind of shyt that *beep* me offffff! Someone post a real concern and we get an attempt at humor where it is not warented.

"Doctors viewed CFS and fibromyalgia as "in your head". It was a "garbage pail" diagnosis, or it was a psych issue. I was one of the first practitioners in my area along with my dear friend and a rheumatologist a few towns over who would even treat these people. The recognition of these conditions and the subsequent research has occurred over a long period of time. We do have a study by the Mayo clinic for our condition and there seems to be more research occurring in the UK. So, I think we will get there, I really do. It is really about numbers. I have patients who present to me with weakness and pain and numbness etc and I ask them all - now , do they twitch. I have only had one patient tell me yes and describe very much what we describe. Many other do not even recongize any twitching. Truthfully the more of us that present to docs, the more likely this will gain some continued attention so we can get the color brochure." This is the kind of stuff we need!

 

[jsageurge]

With dilemmas such as this, I do the only sane, logical, rational and “scientific” (evidence based on effectiveness) thing that the average western minded software engineer would do. I consult the I Ching.

 

[ZekesTraveller]

July 17, 2007

Chronic Fatigue No Longer Seen as ‘Yuppie Flu’

By DAVID TULLER
For decades, people suffering from chronic fatigue syndrome have struggled to convince doctors, employers, friends and even family members that they were not imagining their debilitating symptoms. Skeptics called the illness “yuppie flu” and “shirker syndrome.”

But the syndrome is now finally gaining some official respect. The Centers for Disease Control and Prevention, which in 1999 acknowledged that it had diverted millions of dollars allocated by Congress for chronic fatigue syndrome research to other programs, has released studies that linked the condition to genetic mutations and abnormalities in gene expression involved in key physiological processes. The centers have also sponsored a $6 million public awareness campaign about the illness. And last month, the C.D.C. released survey data suggesting that the prevalence of the syndrome is far higher than previously thought, although these findings have stirred controversy among patients and scientists. Some scientists and many patients remain highly critical of the C.D.C.’s record on chronic fatigue syndrome, or C.F.S. But nearly everyone now agrees that the syndrome is real.

“People with C.F.S. are as sick and as functionally impaired as someone with AIDS, with breast cancer, with chronic obstructive pulmonary disease,” said Dr. William Reeves, the lead expert on the illness at the C.D.C., who helped expose the centers’ misuse of chronic fatigue financing.

Chronic fatigue syndrome was first identified as a distinct entity in the 1980s. (A virtually identical illness had been identified in Britain three decades earlier and called myalgic encephalomyelitis.) The illness causes overwhelming fatigue, sleep disorders and other severe symptoms and afflicts more women than men. No consistent biomarkers have been identified and no treatments have been approved for addressing the underlying causes, although some medications provide symptomatic relief.

Patients say the word “fatigue” does not begin to describe their condition. Donna Flowers of Los Gatos, Calif., a physical therapist and former professional figure skater, said the profound exhaustion was unlike anything she had ever experienced.

“I slept for 12 to 14 hours a day but still felt sleep-deprived,” said Ms. Flowers, 51, who fell ill several years ago after a bout of mononucleosis. “I had what we call ‘brain fog.’ I couldn’t think straight, and I could barely read. I couldn’t get the energy to go out of the door. I thought I was doomed. I wanted to die.”

Studies have shown that people with the syndrome experience abnormalities in the central and autonomic nervous systems, the immune system, cognitive functions, the stress response pathways and other major biological functions. Researchers believe the illness will ultimately prove to have multiple causes, including genetic predisposition and exposure to microbial agents, toxins and other physical and emotional traumas. Studies have linked the onset of chronic fatigue syndrome with an acute bout of Lyme disease, Q fever, Ross River virus, parvovirus, mononucleosis and other infectious diseases.

“It’s unlikely that this big cluster of people who fit the symptoms all have the same triggers,” said Kimberly McCleary, president of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, the advocacy group in charge of the C.D.C.-sponsored awareness campaign. “You’re looking not just at apples and oranges but pineapples, hot dogs and skateboards, too.”

Under the most widely used case definition, a diagnosis of chronic fatigue syndrome requires six months of unexplained fatigue as well as four of eight other persistent symptoms: impaired memory and concentration, sore throat, tender lymph nodes, muscle pain, joint pain, headaches, disturbed sleeping patterns and post-exercise malaise.

The broadness of the definition has led to varying estimates of the syndrome’s prevalence. Based on previous surveys, the C.D.C. has estimated that more than a million Americans have the illness.

Last month, however, the disease control centers reported that a randomized telephone survey in Georgia, using a less restrictive methodology to identify cases, found that about 1 in 40 adults ages 18 to 59 met the diagnostic criteria — an estimate 6 to 10 times higher than previously reported rates.

However, many patients and researchers fear that the expanded prevalence rate could complicate the search for consistent findings across patient cohorts. These critics say the new figures are greatly inflated and include many people who are likely to be suffering not from chronic fatigue syndrome but from psychiatric illnesses.

“There are many, many conditions that are psychological in nature that share symptoms with this illness but do not share much of the underlying biology,” said John Herd, 55, a former medical illustrator and a C.F.S. patient for two decades.

Researchers and patient advocates have faulted other aspects of the C.D.C.’s research. Dr. Jonathan Kerr, a microbiologist and chronic fatigue expert at St. George’s University of London, said the C.D.C.’s gene expression findings last year were “rather meaningless” because they were not confirmed through more advanced laboratory techniques. Kristin Loomis, executive director of the HHV-6 Foundation, a research advocacy group for a form of herpes virus that has been linked to C.F.S., said studying subsets of patients with similar profiles was more likely to generate useful findings than Dr. Reeves’s population-based approach.

Dr. Reeves responded that understanding of the disease and of some newer research technologies is still in its infancy, so methodological disagreements were to be expected. He defended the population-based approach as necessary for obtaining a broad picture and replicable results. “To me, this is the usual scientific dialogue,” he said.

Dr. Joseph Montoya, a Stanford infectious disease specialist pursuing the kind of research favored by Ms. Loomis, caused a buzz last December when he reported remarkable improvement in 9 out of 12 patients given a powerful antiviral medication, valganciclovir. Dr. Montoya has just begun a randomized controlled trial of the drug, which is approved for other uses.

Dr. Montoya said some cases of the syndrome were caused when an acute infection set off a recurrence of latent infections of Epstein Barr virus and HHV-6, two pathogens that most people are exposed to in childhood. Ms. Flowers, the former figure skater, had high levels of antibodies to both viruses and was one of Dr. Montoya’s initial C.F.S. patients.

Six months after starting treatment, Ms. Flowers said, she was able to go snowboarding and take yoga and ballet classes. “Now I pace myself, but I’m probably 75 percent of normal,” she said.

Many patients point to another problem with chronic fatigue syndrome: the name itself, which they say trivializes their condition and has discouraged researchers, drug companies and government agencies from taking it seriously. Many patients prefer the older British term, myalgic encephalomyelitis, which means “muscle pain with inflammation of the brain and spinal chord,” or a more generic term, myalgic encephalopathy.“You can change people’s attributions of the seriousness of the illness if you have a more medical-sounding name,” said Dr. Leonard Jason, a professor of community psychology at DePaul University in Chicago.



Home
World U.S. N.Y. / Region Business Technology Science Health Sports Opinion Arts Style Travel Jobs Real Estate Automobiles Back to Top
Copyright 2007 The New York Times Company
Privacy Policy Search Corrections RSS First Look Help Contact Us Work for Us Site Map

 

[EyeoftheWild]

Zeke, fifteen years ago I would have read that article and said, "you see, it's not in my head...holy shyt," or words to that effect. The issue is not positive thinking vs a drug, but rather how one is going to live one's life.

It seems in our "modern" age that chronic illness abounds. Experts can't agree on what tack to take with them, and there are no end of theories. I recently listened to a BBC broadcast on-line where they postulated that inflammation is at the root of many illnesses, including cancer. It was stated by these eminent scientists that it might just be the theory that brings all the specialization back under one roof.

It is difficult to think positively, or even speak positively when we feel our bodies are being assaulted, each and every day. Been there, done that, sucked so bad there wasn't even a barf bag. I was offered all manner of drugs, including anti-depressants. It is a long depressing story and one that ends with BFS. (Begin, first start) Before bfs I waited for a "cure." I tried modern meds, homeopathy (which I actually think has a lot of merit), diet, not dieting, exercise, not exercising, juices, and supplements. I figured I would just live with my low-level energy, low-level depression my entire life, and then just bite it. I became so dulled to things that I originally once loved, that I couldn't even remember what I had loved, or even why. I was dad, husband, etc, but not really Basso. In other words, I get where you are coming from.

There are those who have reduced my exhortations to believe in one's own wellness as "positive thinking," "smelling the roses," and what have you. However, that is not where I am coming from. I rarely, if ever say, "hang in there," or "relax," or "try not to worry." That is evidence of the positive thinking mantra if ever there is one. No, what I am saying, as are many of my bfs colleagues, is that there is a broader way of perceiving life, a way that doesn't place us in the role of unwitting victim.

CFS is a much worse illness, because a person is terribly exhausted, but not afraid. Therefore, there is not the catalyst that bfs has to change one's thinking, and thus approach to life. Your life was great before this, well and good, but now you have an opportunity to shift your reality.

Even if you become a champion for the acronym BCFS, you will not feel any better. This is not a physical illness, but rather a spiritual one manifest physically. The cure is not to "fix" us, but rather to identify what gives meaning to life...and then pay homage to that life, by living with what force we can muster.

I am not against anyone furthering the scientific debate, but part of that debate has to be the science of the psyche, and the role that being a human life force on a planet, in a solar system, in a universe of a universe, plays. We can read studies and testimonials until we are drunk with information...I say, better to be drunk on life itself.

Basso

 

[ZekesTraveller]

Basso thanks for your input.

I do agree that the mind has a powerful role to play in any illness one encounters in his or her lifetime. I would just like to add that I am not caught in a whirlpool where BCFS has consumed my life. This is where I think you may be making a judgment error on my mode of thinking. What I mean is that I get through life very well regardless of my BCFS. As a matter of fact I view life very similar to your views even if my posts don't always reflect that similarity.

I have also tried the varied items you listed and I would have to agree that developing ones mental mantle is the best defense against BCFS plus Klonopin.

Actually I hate the term BCFS and prefer the term PNHE for the same reasons people who have CFS hate the term CFS.

Why do you say that this is not a physical illness? These are the same type of arguments people with CFS were subjected too in the early days.

Also, I think the report is correct when they state that CFS may have more than one cause. For some it might be the mind for others it might be an actual physical assault by some pathogen. Maybe with BCFS it is the same thing. When I came down with this illness I was under a tremendous amount of stress with the mystery flu to boot! So, I don't discard the possibility that I myself may be one of those that may have the "mind" form of BCFS. But I will keep an open mind about this illness also having a physical cause.

By the way, what if any medications do you take for this syndrome?

The reason I went vegan was because I do agree that inflammation is an underlying cause of so many of our modern illnesses mostly due to the type of food Americans eat which is mostly junk. Canadians may not have the horrible eating habits that we have in America...yet!

I once read somewhere that the price of affluence is extinction and in America we certainly are eating ourselves to death! Just today I read that people are showing up at the doctors office with Type 1 AND Type 2 diabetes. A lot of this has to do with the attitudes we bring in as a society. Maybe we just need to chill for a while and get back to nature. You call it spirituality.... I call it getting back to the way God intended...natural. Same thing.... different name. I don’t know how it is in Canada but here families don’t even sit down for diner anymore. Most of the time they get their plates and go to their rooms to watch their preferred TV program. That’s our fault as a nation…. ranting!

Anyways, I wish this did eventually go away. I call it going down to the noise floor. While others call it getting past it. Again it is the same thing but with different words.

[/i]

 

[EyeoftheWild]

I don't take any meds, except for a daily ranitidine for gerd. I used to enjoy single malt whiskey, and called it medicinal, but I forgo all alcohol these days.

I think that you are right on the money regarding the affluent nature of our society, and it's affect on health. We have achieved startling success, and are now witnessing the down-side of this success. Canada has not been immune to the plethora of ailments that are becoming so prominent, and we have the same awful eating habits. I do think you guys have much bigger portions though, if restaurants are anything to go by.

So, we have become less attached to our families, more attached to our material things, and now we suffer from all manner of auto-immune disorders. I think your rant is definitely part of the truth of how we view ourselves, and our lack of wellness.

The answer to this dilemma seems in having a revolution, a loving revolution. I have tried my darnedest to interest people in an orgy in the Off-Topic lounge, but so far there have been no takers.

Basso

 

[SirTrouserz]

Hi All,

Thanks for all the great input! That was a great article on CFS Zeke. When I was telling a relative about BFS recently she mentioned that someone else we know has CFS. She said it was difficult for that person to use their hands and that the exhaustion was terrible. It did make me wonder if there is any connection between the two syndromes as well, given some of their other similarities.

Those are great ideas, too, Phil. I found the lack of recognition by neurological associations very troubling.

I have just a few questions about the goals you listed Phil.

1. We require a new name for BFS. I agree, but I think part of the problem is BFS has had too many names and too little recognition. The old articles list "Cramp-fasciculation" syndrome, PNH and there are others. I like the name you came up, but scientific organizations would probably be more likely to recognize a name already established. I don't know for sure, but it was just a thought.

I think all your ideas are great, but recognition seems to be like the first step. Do you think we should we start by petitioning the US National Institute of Neurological Disorders and Stroke to at least gain recognition of the syndrome?

Other than the Mayo study and a few other articles, BFS is somewhat absent from view by anyone but us. Maybe we could ask the moderators of this site to add on some new features to the Index in order to support some of our goals?

I also think we need:
1) a way of creating petitions for us to sign
2) a new way of doing polls that allows for compilation of information over a long term and that involves more of the people on the data base

I'm not computer savy, but if the BFS website is not a good place for these things, maybe we can create a new website for them.

Thanks for all the great input and lively discussions )
Sir_Trouserz

 

[raptorx]

I am going to jump in here to say that I do agree about changing the name, it seems the medical field doesn't acknowledge the current name anyway. So, a flashy new name like Chronic Neuromuscular Synapse Disorder might just catch their attention! (Besides it is politer than my pet name for it, Bull F** Shyt.)
I also have to agree that it is most disheartening to go to a neuro and have him shrug and say I don't see anything wrong, have you thought about counseling? This is what I am sure has left many of us googling, and eventually lead us here. (It took over a year to finally google the exact combo of words to lead me to this site) Wemove.org has nothing about it. I think getting us onto other sites like theirs, CDC and Nihd, would help raise awareness.
I guess I sort of feel left out in the cold. Without knowledge about bfs, what hope is there for any real help? After all knowledge is power!
Now where are we going to find a celebrity?