Tuesday, September 18, 2007
Living with chronic fatigue
Imagine feeling profoundly lousy for months, even years at a stretch. On many days, you can't even get out of bed. Sleep doesn't help. You go to the doctor, get tests, but a diagnosis remains elusive - and treatments incomplete. That's what life can be like for people with chronic fatigue syndrome (CFS).

More than one million Americans have CFS, a debilitating illness researchers have been studying for some 20 years. There are few clues to what causes it (infectious agents? toxins?). And many questions (how do you treat CFS? Isn't it really just a 'fake' illness?).

Now, researchers in California say chronic fatigue syndrome may be linked to the presence of enteroviruses -- viral microorganisms that reside in your gut. Using endoscopies, researchers analyzed stomach tissue biopsy samples from patients with CFS - and found more than 80% of them had high levels of viruses in their digestive system. (All 165 patients had gastrointestinal complaints as part of their CFS litany of symptoms.)

Does this mean you should run to the doctor and demand a test? Not yet.

"Anybody who has chronic fatigue doesn't need to run out to their doctor and get an upper endoscopy, explains Dr. James King, president-elect of the American Academy of Family Physicians. "Even though this is very helpful and promising, it's not to the point that the treatment for chronic fatigue will change soon."

Do you think you might have chronic fatigue syndrome? If you have 4 or more of the following symptoms you may want to get checked:

* severe fatigue 6+ months or longer
*memory impairment
*sore throat
*swollen lymph nodes
*muscle & joint pain
*poor quality sleep
(Source: CDC)

While there is no cure for chronic fatigue syndrome in sight, researchers see this as an important jumping-off point: They can now study how these viruses behave, how to detect them, and how to kill them with anti-viral medications. The study is published in the Journal of Clinical Pathology.

Have you lived with chronic fatigue syndrome? For how long? What were your best days and worst days like?
I have had CFS and FMS for 13 years.
My life is constant pain, being tired and sick. The CFS and FMS is worse when I have to much activity, stress, excitment or emtional unheaval or not enough sleep. As I get older, they are getting worse. I just exist, no longer enjoy life. It hurts to much.
10 years with CFS and still no cure in sigh...please don't forget those suffering from this unrecognise disease.
I have suffered with CFS for 16 long years. The first 7 were almost unbearable. At year 8 I got brave & started walking once a week...not very fall at all, mind you!!! I would be much sicker for the next week after each walk, but over the course of 10 weeks, I improved. The last 9 years have been cycles of good and bad. I do now have a quality of life & am a very happy person. However, I am unable to work because I cannot do any activities with any regularity.

I look forward to hearing more about this latest finding. Thank you. Pam
My husband has been suffering with symptoms that resemble chronic for more than 6 months. He's always complaining of nonrestorative sleep and sometimes doesn't sleep at all. He's achy all over and his memory is very bad, along with the rest of the symptoms listed. Bloodwork and other tests prove negative. And this is always the pattern. Could he be a candidate for CFS?
I have had CFS for 9 years now, but have been unable to work for 2 years. I look forward to more research in this field and possibly more treatments to try. My days go slowly and my weeks go by fast! We have all come a long way in the past few years - at least now the disease is getting recognition as a REAL PHYSICAL ILLNESS! I hope respect follows! P.S. You don't look sick!
I have suffered from CFS since September 2005. In my case It all started with an Epstein Bar Viral infection together with CMV and HHV6, my liver was affected, GPO, GPT, etc... But after the infection EBV remained active for 18 months. I was treated with antivirals for 14 days last January 2007 (Zelitrex) and my EBV became negative in April. Since then I feel much better. I came back to work, but many symptoms still remain, and my energy is limited. I have had all kind of parasites in my intestines: Giardia Lambia, Blastocystis Hominis, Helicobacter Pilory, and recently they saw Entamoeba Histolytica which is a dangerous one that can be invasive... I treated it last month with Yodoxin and Metronidazol, lets see in 4 weeks if I am parasite free. I do recomend everybody to check for intestinal parasites with 3 samples 3 days in a row, they can be responsible to elevate your Nitric Oxide, Elastases, Rnase and all the immune abnormalities that we normally have... and parasites can be treated. Al the best.
Carlos
I've had CFS for just over a decade. I've lost friendships because of this. There are so many things I wish I could do, but I don't dare. The biggest symptom for me is if I exercise (yes, I've tried, and yes, I've started off slowly) but when I exercise, the soreness that used to last only a day now is unbearable for two or three days. And my emotions suffer after exercise or a lot of exertion. I'm only 34. Worst of all is when the symptoms sneak up and swamp you without warning, and then I call in sick. It's embarrassing and humiliating. You just always pray for a cure.
I've been living with the symptoms for 9 years now. I hesitate to call it CFS, to me that diagnosis has a stigma, it means they have given up trying find out what is really wrong. We are calling it hypersomulence.

The hardest part I've found is the isolation. It is almost impossible to make plans and keep them, some days just getting dressed takes all the energy I have and other days I can't even do that. Friends drifted away and it was just easier to let them go. And then there were those who couldn't understand and just thought I was malingering because there weren't any visible symptoms.

The worst days are spent laying in bed trying to sleep but the pain is too intense and it keeps waking me up.

The best days are spent working in the garden flirting with the boundary of too much exertion that leaves me a zombie for weeks.
I've been struggling with EBV, CFS, and IDS since the 70's.I have come to the painful realization that I can no longer work.The last few years, my GI tract has been a major source of distress. I've had 3 endo's and a colonoscopy.Dx: Chronic Gastritis & Duodenitis.
I've been a nurse for over 30 years and it amazes me how little is known about this dibilitating disease.
I was diagnosed with CFS when I was 26 years old. I suffered with CFS for over a year. At that time my doctor told me that he didn't know what to do anymore. He had tried everything but I still was feeling horrible. I decided that I had nothing to lose at this point and sought out treatment from a classical homeopath. I haven't had any problems with CFS for 15 years now.
Hi i have had cfs for 12years,i am a 43 year old male, married with 2 kids, i had a cyro megalio liver virus(think thats how its spelt) for 6 month thats what the doctor thinks started mine.If it was not for my loving wife and kids i know i would have topped myself before now.i was fit as a fiddle before getting this,its horrible, degrading,people that don't understand and are judgemental are the worst i wish they could get it for a week and understand how terrible it is.I hope and pray that this study does help and find a cure for all the poor suffers out there.gut problems is one of many complaints of cfs.
I'm a 31 year old white male with no history of MENTAL ILLNESS (I'll elaborate on the 'caps' later) and have had CFS since 1993.

When I was a child, I had several bouts with Strep Throat and Tonsillitis which were often severe in nature.

As I entered my teenage years, this ceased but something 'new' came about: I found that when I became overly stressed physiologically or sometimes physically; I began getting ill with what was similar in nature to Mononucleosis (though I was never diagnosed as having contracted Mono).

For treatment, I took antibiotics which DID have an effect on the unknown ailment or sometimes when I felt 'it' coming on, I would beat 'it' to the punch by resting, which would prevent a full scale eruption (EXTREMELY sore throat, fever upwards of a 104 degrees, body aches, chills).

This cycle would repeat itself, in a relapsing and remitting fashion coming and going until I was 26 years of age -- then my condition changed.

During late 2002, I was really into jogging; and the day after a particularly grueling workout, I became very ill with the same the same symptoms I had become previously accustomed to which lasted around month.

After recovering, I resumed my normal workout routine, except this time I came down with this nasty malaise immediately after working out and within a few hours became very sick -- again.

I was beside myself, and tried again to resume my exercise routine and again got the same results -- profound sickness.

At this point, I knew something was seriously amiss, so I decided to finally schedule an appointment with an Ear, Nose and Throat Doctor.

During my appointment, I explained in detail my prior history with Strep throat and what was currently going on -- but the Dr. reacted in a very crass manner and responded by saying verbatim "Well, what do you want me to tell you?" and in in turn, I responded angrily "Hell, your the Doctor, you tell me!"

'Surprisingly' he had no clue - thus his frustration - which, in hindsight, I was probably not the first person he'd seen with similar complaints.

However, something good did come out of our conversation: He referred me to Dr. Patricia Salvato in Houston, TX who specialized in treating patients with a disorder I'd only heard a few times before -- CFS or Chronic Fatigue Syndrome.

I then scheduled an appointment with Dr. Salvato, who explained to me what the hallmarks of CFS were, which, to my amazement, were almost identical to what I'd been experiencing for well over a decade and unlike the jerk who'd referred me to her, she was very warm and receptive to my issues. She genuinely seemed to care.

Dr. Salavato proceeded to perform various tests examining my immune system which showed an abnormally low level of NATURAL KILLER CELLS -- your bodies first line of defense against invading pathogens.

Additionally, several of my my IGA (antibodies) subtypes were either too high, or too low. The Dr then prescribed Glutathione injections (the body's master antioxidant) to help bolster my Natural Killer Cell count.

Unfortunately, these didn't help any and my tolerance to exercise was begging to exacerbate. I no longer could even jog a mile nor play team basketball without getting hellishly sick afterwards.

Furthermore, I had developed an intolerance to sunlight: anything beyond 15 minutes of UV prime-time would lead to post-exertional malaise, somtimes followed by full blown sickness.

Also, I developed Insomnia. No matter how tired I was, I couldn't sleep. Many times when I did finally crash out, I'd awake in feverish sweat, literally drenching my sheets with the salty fluid.

At this junture, I could no longer maintain gainful employment. I became very isolated and very depressed and after a couple of years, I began seriously contemplating suicide. I couldn't deal with what had become of my life and 'thought' for all intensive purposes, it was over.

At the suggestion of my mother, I went to speak with a renowned Psychiatrist, also in Houston, named Dr. George Glass. I didn't disclose to Dr. Glass what I believed my condition was - I just described the symptoms. His assessment was my condition was 'mental' in nature and was, in his words, 'B.S.' and furthermore, Dr. Salvato was 'a quack.' Suffice to say, he was very helpful.

I then went to the Mayo Clinic in Jacksonville, and was attended to by a Dr. Daniel Macklin. His demeanor was very dry (to say the least) and as I explained my symptoms, I intially got that same "I don't believe you" vibe. After a few minutes, it was obvious he didn't believe CFS existed, though to cover his proverbial buttocks, he did say that "In a hundred years we may all look back and realize just how stupid we were." Indeed you will.

They (The Mayo Clinic) however, did do an extraordinary amount of medical testing on me and did find the same abnormalities as Dr. Salvato in addition to one other -- high Albumin levels; which they noted as being consistent with 'dehydration. '

This wasn't the least bit surprising though, since I'd been waking with my eyes virtually glued to my lids for the past year and my life long ophthalmologist also noted that my tear ducts weren't producing as much fluid as they should be.

The icing on the cake though was an MRI of my brain which showed subtle white matter abnormalities, specifically demyelinization taking place (the same stuff that causes Multiple Sclerosis).

Now, this actually was quite a relief, since I thought "Hey, it WAS all in my head! This whole time, due to troubles in my upbringing, which never occurred, had caused a mental illness which did a profoundly good job of masquerading as a serious health disorder.

Course' I think 'we' know better and after years of researching CFS online, trying to find a cure, or, at the very least, 'something' that would help alleviate my symptoms (especially the post-exertional malaise) I've found nothing but a wall of Psychiatrist with God complexes and a bunch of impotent Bureaucrats.

By the CDC's OWN ADMISSION, CFS costs the United States over $9 BILLION DOLLARS in lost wages due to persons whom are too ill to work (like yours truly) -- yet how much money has the government allocated towards CFS funding? By my count, around $2 million dollars.

It's OUTRAGEROUS. People are sick here in the US of A, they're not getting the help they need whilst we're spending BILLIONS OF DOLLARS in this 'war' in IRAQ.

However, I blame the Psychiatric community more than any other for impeding the progress of CFS research. They've done everything in their power to implant that seed of doubt that CFS is "Just in your head" just like they've done with many other illness in the past.

Study the dubious history of Psychiatry and you'll see exactly what I'm talking about. It's literally inundated with epic screwups from shrinks labeling THEN what are NOW commonly accepted diseases as 'mental' and like CFS, they're idle talk during games of chess hindered research, leading to a treatment/cure.

Aside from the the-rapists, (get it?) the name Chronic Fatigue Syndrome is probably the most idiotic name ever stamped onto an ailment, since it trivializes the nature of the disorder by reducing it to merely 'Fatigue' which, everyone goes through -- whereas CFS causes multi-system dysfunction, leading to broad array of varying symptoms. I mean, does someone suggest a person has AIDS when they hear them cough? Yet, because of the misinterpretation caused by the name CFS, this nonsense happens all too often.

As Lara Hildebrandt (the author of Seabisquit and longtime sufferer of CFS) eloquently put it, "Comparing normal fatigue to CFS is like comparing a match to a Nuclear Bomb."

As for myself to today, well, I've resigned to the fact I'll probably have this disease for the rest of my life. I try not to focus on the negative instead look at what I do have as opposed to what I don't have, which, granted, is easier said than done. I don't know what tomorrow holds but I do know one thing - I AM NOT GIVING UP. PERIOD.
It starts off slowly, with one thing after another affecting your life. Soon, it snowballs into multiple areas where you can't seem to get a handle on it. Between the pain of CFS and FMS, and the depression, one puts oneself into survival mode, hoping that there will be some way of getting relief somehow, someday.
so I don't quite understadn this, how do intestinal viruses directly affect on'es concentration, joints, nymph nodes, and etc. What I want to know is, these symptoms are actaully quite rangy and ambiguous, do they have to occur all at once, or at different points in time?
Take heart fellow sufferers...the
force is with us...a little slow, maybe...but there.
I am ill for 17 years and have improved perceptively since year
three...very very slowly but still
a stabilization and preditability grew. I now work...in a modified position, full time.
I have been sick for 21 years. The disease has been a roller coaster and has had a profound impact on my life. I got sick at 28 and I am soon to be 50. That is depressing. What is not depressing is that finally we have identified a potential cause for CFS. Please keep up the reporting. Thanks. George in CA.
I am a health care professional suffering for over ten years with CFS and FMS. Many times at work I was much more ill than the patients I was caring for, but I am a single mom and was on survival mode. Before becoming ill I worked full time and had a very normal life. I knew I was very ill but all the doctors I went to just played it down or basicly did'nt believe me. I have totally given up on doctors. Because they can't easily pin point the problem it must be "all in my head". CFS is a very real illness and I hope they find the answer soon.
I am 26 years old and I got what is now being called "CFS" about 5 months after a surgery I had at the age of 24. One day I felt like I was getting sick, and the next I woke up and could barely move or think. The resistance of physicians to investigate what happened to me was unbelievable. Without so much as evaluating me, most of them told me to my face I was lying, or recommended I go on antidepressants. No tests for infections, no Lyme disease panel, no toxic exposure tests, nothing... Well antidepressants did nothing (because I'm not mentally ill), and I am still disabled to this day, at the ripe old age of 26. I lost my job, have no energy to do social activities, and had to move back in with my parents - who thankfully were nice enough to take on the burden of caring for an extremely ill child.

On the positive side, there seem to be a few physicians and researchers who are starting to "get it". Dr. Montoya at Stanford is running a trial funded by Roche pharmaceuticals to evaluate whether "Valcyte", and anti beta herpes virus drug (CMV,HHV6) can treat or even cure CFS in a subset of patients. Dr. Lerner in Detroit has been using these drugs for years with success - despite most regular doctors ignoring his research. I hope to be able to try this therapy soon, because after loosing my job, my life, and my dignity to this disease, I am hopeful for any improvement.

See: http://www.vicd.info
http://www.hhv6-foundation.org
htt://www.cfsviraltreatment.com
I have had CFS and Fibromyalgia for 30 years. You cannot imagine how debilitating this disease is. It has cost me my life. It has progressed to the point that I can't work, can barely "do" for myself. I lost job, house, everything to this, and doctors just want to put you on antidepressants. Depression is not the cause. It is the RESULT. I have spent my life feeling like I was living on the fringes, and getting pain meds is like pulling teeth.
I've been ill for 5+ years. It is an ongoing struggle with symptoms waxing and waning and often unpredictable in severity (which can include dysfunction of the cardiovascular system and central nervous system). One constant seems to be crushing fatigue. Many sufferers are isolated by this disease and often feel pressed to defend their illness, as it has been called the "invisible disease". There is still a lot of ignorance among medical professionals and it is very difficult to find doctors who will attempt to treat those suffering with CFS. The more public attention CFS gets, the better: awareness is a key part in helping to piece together this frustrating and quality-of-life-destroying puzzle.
It's been 13 looooong years since I was first diagnosed with CFS at U. of M. Hospital in Ann Arbor, MI. I've tried many things, all types of tests, but I still am slowly watching my world become smaller and smaller.

I no longer can work, I can't socialize. All my available energy must be used to keep myself, my apartment and my dog fed and clean. One of the worst things about CFS is that few believe in it so the isolation is compounded by disbelief. Even family and doctors don't understand it, much like MS was ten or so years ago.

Thank you for this forum and the opportunity to speak out on behalf of those of us who do their best to "live" with this very debilitating, silent illness.

I hope these comments will attract more attention to our plight and that real help will be forthcoming.
I have had CFS since 1994, after a mononucleosis infection that never quite went away. Although my health has never been the same, I managed to work until last year when I got significantly worse and had to leave my job. It took almost 13 years for an official CFS diagnosis to be made. I am in a subset of CFS that has a viral onset, and have persistently high antibodies for four viruses that make me very sick. I have many symptoms, but the most debilitating are a flu-like pain that is very distracting, and profound exhaustion.

I am currently participating in a study at Stanford that will assess the effectiveness of a powerful drug called Valcyte. Although there is hope for a breakthrough, I am worried that I will remain unable to work and feel uncertain about my future. Because this is an invisible illness, I look okay. The worst part of having CFS has been the lack of compassion and understanding from so many people in my life and the shame that I sometimes feel when talking about my illness.

The government has taken away the legitimacy of my disease by giving it a ridiculously trivial name and earmarking a woefully low amount of funding for research. Because of this, my credibility has been damaged, and the vast majority of people that I interact with do not take my illness seriously.
I have been very sick for the last 3 years - I've just gone back to work and am finding it very hard, but now I have three small children. I can't get anyone to test my for anything other than the standard causes of depression here in Canada. robgreenaway@hotmail.com (put CFS in the subject line if you email me)
I am a former physician/ clinical researcher with CFS, which occurred after an episode of what appeared to be the flu. I am no longer able to work. Fortunately, because I was a physician I was able to be diagnosed quickly and encountered little doubt from my doctors that I had a physical illness. However this is not true of most CFS sufferers, who are often labelled as "depressed" or "hypochondriacs."

I would like to thank CNN for their coverage of this research. Stanford University Infectious Diseases Department is currently conducting an innovative research project on CFS concering another virus, human herpes virus 6. Some people have recovered significantly with antivirals.

I believe that in the end, CFS will be found to be a viral illness with different viruses involved in individual cases.
Fatigue, malaise, and other various symptoms have been ongoing for approximately 35 years beginning before 1972. I became so overwhelmed with fatigue and malaise that it was very difficult to manage my home and take care of the needs of my husband and three young active children. During those times, I would tell myself that the problem was "in my head", and I would force myself to continue with my active home life, catching "naps" when I could and struggling day-to-day. During the 70's my doctors made me believe that the problems were psychological, and that I should be able to be rid of them through "fortitude." The attitudes of the doctors during that period of time caused me to be depressed and left me feeling totally inadequate as a mother and wife as I felt I was "lazy" and not a good homemaker.

Early 2002, a rheumatologist told me I had FMS. In 2005 another rheumatologist told me I might have early lupus and kept watch on labs and symptoms and placed me on Plaquenil to help alleviate inflammation and lessen any possible organ damage. On February 13, 2006, I had a confirmed lupus diagnosis via positive ds-DNA tests. HOWEVER, that diagnosis was "un-confirmed" in 2007 when other lab tests failed to validate the lupus diagnosis. The fatigue, so great, tests to rule out sleep disorders were run late 2005. It was at that time I was informed by my primary doctor I had chronic fatigue.

The fatigue involved with CFS is overwhelming. Those who have it are so very alone. It is a silent problem and we who have the problem may even look normal. I am now almost 61 and have struggled with invisible illness for over 35 years. Much of my life has been robbed of what other "normal" and healthy people have.

I'm grateful that the medical community and the general population have grown to realize that labels are just that; "FMS" is a label for whatever an underlying causes of the problem. Believe me, the problem is very real and can and does destroys lives.

My best days I could function fairly normally or what I perceived to be "normally," and on my worst days I have been in bed with total fatigue and pain and off work on total disability.
hi

i am a 35 year old male and i have had CFS for almost 7 years.

many people with CFS (or PWCs) are met by DRs who thinking they are making up their symptoms.

when i was diagnosed around the Fall of 2000, that was the norm.

thankfully that is now changing. articles like these help alot.

my DR was not one of those DRs who believed that CFS was made-up disease. he told me i have this condition called Chronic Fatigue Syndorme. he told me it used to be called Post Viral Fatigiue Syndrome.

the bad news he gave me was that currently it is not known what causes it and that there are no treatments other than to treat certain symptoms.

i am glad that the first DR that i saw for this knew that it was real and wanted to help. it is more than many with CFS were met with from the people that they entrusted their care to.

my DR mentioned Dr Nancy Klimas at the Univ of Miami. and over the years she has been a very strong advocate for our cause and a careful researcher.

there are other DRs out there who have committed themselves to help us not get lost in the system, and their job has been difficult because they too have been fighting this opinion that CFS is not a real disease.

there has been quite a few high profile notices recently about discoveries from the medical field relating to CFS. among them (but certainly not limited) are the finding of Dr Montoya at Stanford Univ and Dr Chia in Calif (not sure of his association to UCLA).

this is very exciting.

i saw Dr Chia not long back and he is a very compassionate man. i sincerely hope that he now gets the kind of financial support that he needs to further his research.

CFS is such a difficult consition to deal with because may of us look relatively healthy.

before i got sick, i was an extremely active person. i worked multiple jobs and worked out 4-5 times a week.

now i can barely walk around the block.

it's hard to put into words, but as the years go by, i can feel my health declining more and more.

but at the same time, my desire to re-engage life has never been stronger.

i certainly am buoyed by this new focus on CFS and hope that we can all rally around these recent successes to help build toward a cure.

thanks for your time
I was first diagnosed with CFIDS 32 years ago at age 20. I have had four episodes in total always triggered by severe viral illnesses and followed by partial recovery. Worst periods (months not days) are characterized by complete fatigue (unable to walk), little or no cognitive ability (inability to read, write well, or remember simmple things), and continous deep muscle pain. This is a complex illness that results in mitochondrial disfunction. It has to be treated symptomatically and you also have to try to get at the root cause related to the enterovirus.
I have lived with CFS now for almost 20 years. My illness has gotten progressively worse over the years to where I can no longer work.

I do have hope that there will be a cure and that is what keeps me going each day.
I've been sick for twenty years with CFS. It all started with the seasonal flu bug that everyone around me had. I was very sick and I knew that something was very different than when I got sick from the flu in the past. I never totally recovered and eventually I had to quit my job. Swollen lymph nodes, chronic sore throats, dizzy spells, exercise intolerance, heat and sun intolerance, brain fog, allergies, tinnitus are just a few of my symptoms. It is my opinion that CFS sufferers have a chronic infection. Our immune systems are not able to rid our bodies of these pathogens which could be bacterial, viral, and or fungal. I see more and more of my friends and family getting ill. CFS is a very real disease and it's strange doctors don't want to believe us. I led a very active lifestyle before this happened. How do we get the medical community to take us seriously? Many times our own familes don't believe us so no one is wearing ribbons and marching for a cure. Goodness knows we are not able to march on our own behalf because we are to sick. Who is there to care about us?
I am 31 years old and I have had CFS for 6 years now. My CFS started with an acute infection of the Epstein Barr Virus. Over the past year I have been worse than I have been in years.

People don't realize how awful this illness truely is because many times when they see us they think we don't look sick. This illness is awful and I pray for a cure every day.

On some of my worst days of this illness it is so bad that I literally feel like I am dying. Some nights I was even scared to go to sleep fearing that I would not wake up. On some of my best days of this illness I am able to get out and about and do some things. I might even feel somewhat ok but never normal or well. I have felt ill every single day for 6 years.

CFS is serious and much more than just feeling tired. We are physically ill and suffering. I hope a cause and a cure is found for CFS.

Thank you for reporting on CFS. Knowledge is a powerful thing. The more people know about it the closer we will get to a cure.
I've had it for 3 years and it has completely ruined my life. I keep going from doctor to doctor seeking help and nobody seems to care enough to look into it.

We need serious help. I'm sick of doctors telling me my symptoms are too vague, as if that has any bearing on how bad I feel.
I developed CFIDS about 7 years ago. I was diagnosed about 3 years ago. I suspect I may also suffer with FM.

My life as I knew it is over. The
"I can do it" person is all but gone. I do not allow myself to ponder the quality of my life very often because I end up feeling hopeless. I do pray and hope for a remission, a cure, something.

I recently found the website message board for individuals with CFIDS and FM. It is helping me to stop questioning my sanity or my suspicion that perhaps I am just a malingerer.

I do not discuss this disorder with many people and I certainly do not try to explain it. I only know that I feel awful most of the time--non-specific pain and muscle aches, traveling pain, nausea, sore throat. mental fog, exhaustion beyond description and more. When I have a good day (and compared to my old good day it is not much) I begin to think that this disease is finally leaving.
But it always returns.
I have had CFIDS and FMS for over 10 yrs. I am 56yrs old and on disability because of my illness.

It is like having the worst kind of flu almost 24 hours a day. How much are you able to do when you have the flu?

I have several virus' in my system along with this effecting my endocrine, central nervous system, very painful muscles, and cognitive function. Just to name a few.

I've been to more doctors than I can count and all different types. We have spent most of our money the last 10yrs on trying different protocols to help me.

My husband had to retire early to help care for me as I am homebound most of the time.

We (people with CFS/CFIDS/ME) need
help but basically have no one to turn to. The drs haven't been trained in how to treat this disease. My dr. crys with me because she doesn't know what to do or who else to send me to.

We are left alone to fend for ourselves...so very sad.
As a fellow CFS/CFIDS sufferer for 40 years, and having struggled successfully to attain a graduate degree in the medical/mental health services, I am struck by the number of postings of "anonymous". I have empathy for them all. I too am grateful for all the research efforts and for your reporting on this disorder which has SO WRONGLY STIGMATIZED those who suffer its incredibly debilitating symptoms. Like the health worker, single Mom, who reported that she worked even when she felt more ill than the patients she served, I found that was the only way to "survive" also. Many of us have had to deny our symptoms even to ourself and just "keep going" until we "drop" into truly recognizable disease states. This is frustrating not only at the personal level of so much physical pain and suffering but on a social level, as a group, without proper treatment and care, we are a wasted human resource. In my case if I had the supports- medical, nutritional, social, that I need, I would now be working in my field. Instead, I have been on the disability roles for 20 years now, have undergone numerous unnecessary surgeries, and have had other hospitalized illnesses that proper care and nutrition would have prevented....ALL AT TAXPAYER EXPENSE. Thank you for all your past coverage of this "dilemna disorder". CFS/CFIDS was found to have a genetic link per research conducted by the CDC in 2005. In the future, theoretically and hopefully, we could learn who is at risk and help them with better care to prevent the decline into disability. Medicaid does not pay for nutritional supplements which keep me functional and foodstamps do not afford a healthy diet in my case. Keep in mind many of us are also going to need nursing home care if finding more effective treatments does not occur soon. Therefore, this disorder is not just a problem for us who have CFS/CFIDS = chronic "flu" syndrome/chronic fatigue and immune dysfunction(deficiency) syndome, but a very costly health tax burden for all of society. Your ongoing good work in reporting on this issue and educating society will benefit everyone.
Very appreciatively yours, another "anonymous" but very real CFS/CFIDS patient.
(ps: I hope you will post this and focus a future report on helping all of us to know WHERE THERE IS HELP :>)
I was recently diagnosed with fibromyalgia and cfs. I am 30 years old and have always been very active but late last year I becam very ill and went to several doctors before I was finally diagnosed. There are some things I just can't do anymore and some days I can't get out of bed.
I have a 15 year old diagnosed with CFS 6 months ago. She is in a constant state of exhaustion, pain, and cannot concentrate due to brain fog. It is horrible to watch your child's life being taken. She had to drop out of school which she loved. She was an honor role student and athlete. Now, she is rarely able to leave the house. A doctor told us that as they see a rise in autism in boys, there is a rise in CFS in girs. Please help find a cure as a new generation suffers with this terrible disease.
I was diagnosed at age 12 with CFS. I was home schooled most of the time in high school because the teachers didn't want me wasting their time. They said I should just go home and be sick because I wasn't going to be there two days in a row. (I wish I could find them to tell them I just finished my Ph.D.). I have had good days and really bad days. I have learned how much I can do and try to cope with how much I can't handle. After 19 years of dealing with both the sickness and the doubt - I am tired of more than just feeling lousy all the time. Seeing that article and being able to tell my brother, my mother-in-law and my former teachers this all isn't in my head, made it a great day!
I too have suffered with CFS and FMS for many years. CFS of course, "in my head" "nothing's wrong with you" say the drs. I struggle through each day getting out of bed, dressing,driving,working, etc.Everything I do is painful and exhausting and haven't had a life for years. Many times, I just want to fall to the floor because of exhaustion and scream for someone to help me and to understand what I am going through.
CFS is not a disease of middle aged, well-to-do white women, as it is often been presented to public by the media. It could be anyone.

My son was a 10-year old fifth grader when he suddenly got ill with Chronic fatigue syndrome. The name is the greatest misnomer and really conveys nothing of the severity and cruelty of the condition. My son was homebound and bed bound for almost 6 years. he was in excruciating agony every waking hour and I was helpless to alleviate his suffering, as well as numerous doctors who took care of him.

Through the social network of patient advocacy, I met so many parents of young kids who just like us a fighting an uphill battle against the disease.

It had been 6 years and it is the most terrifying ordeal a parent can imagine, which destroys the life of your child, life of the family, ruins careers and family finances. The prospects are bleak since there is no definitive etiology established and no cure in sight.

There is many more CFS sufferers in the US than patients with AIDS, multiple sclerosis, lupus and other commonly known conditions. However government funding through the NIH of CFS research is almost non-existent. No wonder the disease is characterized as 'mysterious"!

Until chronic fatigue syndrome receives it share of government funding to conduct research, then millions of people like my son will continue to languish in this hopeless condition.
my sister has live with fm and cfs for the last 10 yrs. i feel for her sometimes, because she is in so much pain. her dr. told her the more she exercise the better she will feel, she works, goes to school, and go to the gym at least four times a week. she also teaches sunday school and wed.night services at our church. she is determined to have a full life. the only thing she is not sure if she wants to have children. she lives on hydrocodone daily. i hope this encourages someone out there.
Whoops, the initial post left out the hallmark symptom - Post Exertional Malaise.

A better definition is the Canadian Definition found here:

http://www.cfids-cab.org/MESA/ccpccd.pdf

Clinical Working Case Definition of ME/CFS.

* Fatigue: The patient must have a significant degree of new onset,
unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level.

* Post-Exertional Malaise There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post exertional malaise and a tendency for other associated symptoms within the patient's cluster of symptoms to worsen after exertion. There is a pathologically slow recovery period usually 24 hours or longer.

* Sleep Dysfunction:* There is unrefreshed sleep or sleep quantity or
rhythm disturbances such as reversed or chaotic diurnal sleep rhythms.

* Neurological/Cognitive Manifestations: Two or more of the following difficulties should be present: confusion, impairment of
concentration and short-term memory consolidation, disorientation, difficulty with information processing, categorizing and word retrieval, and perceptual and sensory disturbances e.g., spatial instability and disorientation and inability to focus vision.
There may be overload phenomena: cognitive, sensory e.g., photophobia and hypersensitivity to noise and/or emotional overload, which may lead to "crash" periods and/or anxiety.

* At Least One Symptom from Two of the Following Categories:

a. Autonomic Manifestations: orthostatic intolerance, neurally mediated hypotenstion (NMH), postural orthostatic tachycardia
syndrome (POTS), delayed postural hypotension; light-headedness;
extreme pallor; nausea and irritable bowel syndrome; urinary
frequency and bladder dysfunction; palpitations with or
without cardiac arrhythmias; exertional dyspnea.

b. Neuroendocrine Manifestations: loss of thermostatic stability,
subnormal body temperature and marked diurnal fluctuation,
sweating episodes, recurrent feelings of feverishness and cold
extremities; intolerance of extremes of heat and cold; marked
weight change;anorexia or abnormal appetite; loss of adaptability
and worsening of symptoms with stress.


c. Immune Manifestations: tender lymph nodes, recurrent sore
throat, recurrent flu-like symptoms, general malaise, new sensitivities
to food, medications and/or chemicals.
I have CFS,FMS,RLS and the list goes on. I was dignoised in 2005 with the top three listed, and have been in so much pain, and have been to doctors and all they seem to want to do for me is tell me excersise is the best thing for it. Well I would like to know how does one excersise if one can not even get out of bed for the pain? They seem not to be able to answer this. Just the past few weeks I have been to my family doctor and told him their has to be some kind of meds out that can at least help, so he has put me on a few, and of course they are not helping yet.
I went as far as having bariatric surgery thinking maybe if I can loose my weight the pain might go away. Well I lost 100 lbs and still full of pain. That to me was a drastic measure to take. Well I'm done playing around there has to be something out that can help with this. And I'm going to find it.
To those of you that have know idea what people experience that have CFS, FMS, RLS here this might help you, try doing a hard work out and getting your muscles very soar, now stay up for at least 48hrs without any sleep, and make sure you do nothing for the pain, now try to make your self get up out of the chair and go to work, or make a meal for the family, or even get dressed, do you think you can do it? Not! All your body is telling you is you need sleep, so you try to lay down and go to sleep, but the pain is so bad your mind can only focus on the pain and not sleep, so you get up and sit longer and a few more days of no sleep, and the pain is now worse and now your body is so out of wack you slip into a state of depression and there is nothing you can do about it. Now the good part, the doctors don't know what to do for you either. Great thing to have huh? So all of you out there that say's it's all in the head, need to research it a little better and try to understand that it is a very real illness or syndrome, what ever you want to call it, but do call it real!
my son was diagnois with ray nauds disease / syndrome. He was just sent to ramadi iraq. My question to you is iraq the right climate for his condition. When he was training in N. Carolina he said he had a hard time shooting plus his feet hurt so bad to walk on. So he also has it in his feet as well as his hands. Or should they change his M.O.S.Please advise me in the right direction.I feel that this is a very serious matter.
9-22-07 re: posting of 5:09 AM ET
To the Mother of the soldier with "ray nauds disease/syndrome" recently sent to "Ramadi, Iraq:

Due to the many issues in today's world surrounding the quality of care by the medical profession (in or out of the military) and not knowing your son's condition, I am as concerned as you are about this situation. As a former counselor for the military in a "hardship duty" area, I believe soldiers who are experiencing the level of discomfort (for any reason) that you are reporting, should not be put in a "battle-ready" situation if they are not "fit for battle".
To do so endangers not only their own life but those of their fellow soldiers.

I would advise you to learn all you can about resources who can assist you to advocate for the health and welfare of your son.
Everyone from medical professionals to attorneys (in and out of the military). I would write to get copies of his medical records, diagnoses, lab tests, treatments and the like, needed to advocate effectively on his behalf, for use now and for his future medical care needs. Your son would have to agree to this effort and sign for these records to be released to you on his behalf.

If your son does NOT WANT to be relocated nor to have his medical concerns/complaints revealed to his superiors, I think you need to respect his wishes. But I would also ask him to consider (a respectful "warning") the possibility that if he cannot perform his duties adequately, he
may be risking responsibilty for the injury (even death) of others.

If his medical condition warrants a change in MOS, location, or even discharge for medical reasons, this is preferable to having to carry the burden for life of contributing to the death or injury of others if it could be avoided. His own condition may also deteriorate unnecessarily as a result of inappropriate military assignments, as you have suggested.

Perhaps there is a counseling clinic where your son is stationed that would be a resource for both of you. Perhaps contacting a Veterans Hospital Social worker who could give you some referral information would be helpful.

Medical information should still be considered CONFIDENTIAL COMMUNICATIONS but do inquire BEFORE you have a conversation, on behalf of your son, as to whether the person to whom you speak will respect this right of CONFIDENTIALITY.

Always get the NAME (spelled correctly) of the person you speak with and record their phone number, title, date of the conversation, and some notes about what was dicussed as well as what conclusion or action was and will be taken. Not wishing to sound or be "negative", we must be realistic about the problems injured veterans faced in receiving proper care that made the news not that long ago.

In the meantime, be sure to stay in touch with your son often and encourage him with your love. You might send "treats" or "care packages" to him with items that he can share with his comrades. You might ask him the names of his close "buddies" also. Whether his friends become concerned, or not, about his health could be helpful in determining just how serious his health condition may or may not be. Their information might be important in your advoacy efforts on his behalf.

Personally I believe there is a God, who is "good", and who is watching over everyone and everything. You will have peace if you just do your best, and so will your son. Our best is all we can do. Then we must accept the results.
I do wish you, your son, and all those in similar difficult situations, ALL THE BEST, and
GOD BLESS YOU,
A former overseas military
counselor.
the CNN poll was very flawed with the question do you want bad foods banned and the answer is of course not but that does not mean we want it with all the corporate crap that been shoved in it such as lab created Transfats, HFCS, artificial flavor and color, nitrates, MSG etc that should of never been put in food to begin with

And yes you can stay thin in America I am 44 6.1 and 161lbs
And I drink organic soda but it pricy as I avoid HFCS like the plague as I get sick from it now
As contrary to the big corn lobby’s HFCS is not the same as sugar and much worse as it robs iron chromium and copper from the body
My mom has had CFS for fourteen years. At first, nothing that her doctors suggested helped or alleviated her symptoms much. She turned to alternative medicine, going to a host of chiropractors, acupuncturists, craneo-sacral therapists and many others and finally discovered Jin Shin Jyutsu (JSJ). JSJ is an ancient Japanese healing art which is non-invasive and relaxing. After discovering this and receiving treatments once a week or more, she began to feel MUCH BETTER! Now, she still experiences occasional bad days and an increased sensitivity to illness, but she is able to do most things that she wants. In fact, it was such a success that she became a certified practitioner herself. JSJ might not completely cure CFS but it certainly helps and is worth looking into! (It also helps with most other things, from minor stomach aches all the way to autism) Best of luck to everyone.
I am a Critical Care RN that was diagnosed with FM four years ago and now CFS. I am 43 years old and have not been able to work for over a year due to these conditions. The fatigue is so bad at times that taking a breath is exhausting. If you do not have either disease, you can not understand. I am not obese nor lazy but have a illness that many think are only for middle age obese women. My hope is the physicians, researchers and the medical community as a whole will begin to understand this is not a crazy or uneducated yuppy housewife disease but one that deserves respect. Thank you for bringing this issue to the forefront and discussing it on your program.
Suffer from Fibromyalgia for over 13 years. Three years ago diagnosed with CFS added to the Fibromyalgia Diagnosis. At least with the Fibromyalgia I was able to work, but now I'm unable to work or even be reliable enough for family and a lot of times for myself.
These conditions really need more press, we need funds for research, so we can get our lives back.
Dear DR Gupta.
Thank you for the intrest in Amarecas Health ,you helping us all .
I have CHRONIC FATIGUE AND IMMUNE DYSFUNCTION AND FIBROMIALGIA,NOW SINCE EARLY 1970.It started with mononucleosis
Nobady could help me ,I was given shock treatments,put in one after a other mental ward ,for a diabolic dease.
CFIDS-FM,CHANGES YOUR LIFE FOR EVER .
IT IS AMAREICAS UNKNOWN EPEDIMIC,AND WE ARE REJECTED ,BY MAINSTREAM MEDIACAL PROFEESION .
Our children have it ,y Doughter has it .
In 1996 I wrote the Book "beyond the dark cloud ",at that time after recieving international email and updates ,regarding this owefull Illness,
I was asured that this Illness is a NEURO IMMUNE DYSORDER .WY DO WE GET TREATED LIKE SECOND HAND CITIZIN?WY DO DR.,NOT HAVE MORE INTREST TO HELP US ?
Please be our Spokes POERSEN ,WE NEED A DOTOR HOW CARES AND WHANT TO HELP US .
To much suffring and rejection is going on ,many take there Lifes
Kindest REgards
Thea Schlosser
AUTHOR ,FOUNDER OF ,CFIDS MEDIA AWARENESS IN 1993
I have suffered from CFS for over 20 yrs. It totally changes your life. I had to stop working, husband couldn't take my illness and left, each day you don't know what is in store for you. It is a constant battle to do things...but not too much. Friends and family seem to not understand. You end up alone a lot and having to get yourself through feeling sick and being very tired and achy all the time. We need as much medical help and research as we can, plus an awaremess of what we go through.
15 years of CFS for me, following Epstein Barr virus (mono). I never got well after that EB hit me, and I feel as if a virus is dragging my body down every day.
Praying for research and meds to help us with this daily battle.
I found it interesting to read an earlier anonymous post where the gentleman described recurrent throat infections. I suffered
repeated Strep infections as a young adult. They were treated by antibiotics, year after year, until my system shut down, having no friendly bacteria left to digest food.

I finally got a referral to an ENT for what my quack internist thought was a "nasal polyp". The ENT was a kind, experienced doctor. He wondered why I hadn't been referred to him sooner, and removed my tonsils within a week. The throat infections, and sinus and ear infections all but ceased. (DUH)!
I give this example because it was strikingly similar to the treatment I received for the next four to five years.

I came to realize that patients themselves are the only ones who can truly research, educate the medical community, and advocate for quality, effective medical care.

I'm disappointed by medical "unprofessionals" who cavalierly say, as a psychiatrist did to me last week, "Well Fibromyalgia is of course, psychosomatic. You admit yourself that when your stress levels are high and you aren't getting enough rest that your symptoms are exacerbated, so you can see my point." He mentioned something about mononeucleosis, which I had been diagnosed with early in my marriage. I told him that.

He replied, "Simple. The virus that causes mono is Epstein-Barr, which practically everyone in the country has. On top of that you're depressed, so your depression causes your so-called FM/CFS."

He quickly prescribed three new medications. So much for this so-called illness, from this so-called physician. If it didn't exist, what was he treating? I spent a week trying the new medication before throwing them out and returning to see my internist - who is much more educated about FM/CFS than most, because of my efforts.

* * * * * * * * * *
History of an Illness

Between 1995-1999, I complained to my internist about migraine headaches, severe neck pain and a feeling of electric sparks shooting down my right arm. I was treated by pain killers and muscle relaxers, and sent to PT. I didn't know that I had a serious condition. The PT sessions invariably increased my pain and caused a recurrence of the shock-like phenomenon.

Finally I went to our family acupuncturist, who quickly warned me that I had an impingement with a herniated disk, and recommended an immediate MRI.

I had fusion surgery in 1999. Within the year that followed, I became extremely ill. I constantly ran a temp of between 99-100 degrees Farenheit. My doctor was mystified, saying that a temperature was the most common indicator of an infection, but I showed no signs of any diagnosable condition.

My body's normal temp is in the mid-97 degree range F. I felt exhausted at the physical, mental and emotional level, which quickly brought my life to a near-halt.

During that period of time it was common for me to sleep 23 out of 24 hours each day, but not feel as though I'd gotten any rest. I cry today as I remember my two young children standing by my bed begging, "Please, Mom, get out of bed. Just get out of bed".

My muscles and joints became exquisitely tender. I was given various pain and sleep medications by my doctor, which really only made things worse - I wound up still exhausted, in pain, and an Rx drunk on top of it all. My doctor really had no idea what was wrong with me, and was able to provide only symptomatic relief. By this point I was losing quite a bit of weight, which frightened my family.

Finally I returned to my acupuncturist - who has been the most knowledgeable, prudent and successful practitioner in a frustratingly long list of treatment providers. He explained that I had Fibromyalgia, and began treating me. The needles and herbs provided most relief I had ever experienced.

I worked with a chiropractor prior to my orthopedic neck surgery. As I described my FM/CFS symptoms, he said, "What did you do to your neck?" I mentioned I'd been in a serious car accident 10 years earlier, sustaining a whiplash injury. He said he had yet to meet a patient with CFS who didn't have a history of neck trauma. He said there was a theory that any sort of injury to the cervical spinal column either released a component that led to the disease, or allowed one to enter the spinal fluid.

I later learned that any invasive procedure can commonly cause a tremendous increase in pain in those with FM/CFDS. I felt a previous surgery site "light up" (arthroscopy in my knee from 5 years earlier).

My weight loss continued, to the point where I lost 10 lbs. over a three-day period of time. My internist was quite alarmed, believing that I had cancer. He rushed through a number of tests, but they showed no sign of pathology. My symptoms, on top of the sleep deprivation and severe pain, were now overshadowed by deadly nausea. I wasn't hungry, and even when I did eat a small snack, I felt awful. It was like being seasick for 6 months. I remember telling my mother that I would rather be in pain than have this awful queasiness.

Finally, when I was skin and bones, (5'-3" and 110 lbs), I was referred to a gastroenterologist. Another kind, skilled physician, he scheduled an upper and lower GI, and a CAT scan.

I was frustrated to learn that once again, the tests showed that I was perfectly healthy. He told me that his diagnosis was one of "exclusion"...Irritable Bowel Disease. I asked how that could affect my stomach and cause such nausea. He said, "IBS can cause problems all the way up to your mouth."

Fortunately, it began to subside after I began treatment with the acupuncturist. By this time I had started to read everything published on FM/CFS, and learned that IBS was a common component.

It was now several years later (2001-2002), and the pain and sleep medications I'd taken for so long were causing more problems than the underlying disease, so I quit them cold turkey.

I began to pray, and join support groups. I also entered serious therapy with a sympathetic psychologist. Unfortunately this therapist was also a sufferer, and when our sessions began to be dominated by his symptoms, his pain level and just how miserable he was, I decided I needed to do something else.

I joined a 12-step group and learned about the principles of a God-centered life, and that to reach spiritual maturity was to choose to be in charge of one's own destiny.

That helped me more than any treatment, liniment, talk-therapy, or stoopid medications (three of which, by the way, were later recalled by the FDA as causing strokes or heart attacks, and even one that causes obsessive behaviors! Viva, Las Vegas!
Celebrex, Zelnorm, and Mirapex).

As if I needed more evidence by that time to convince me that I could trust only myself and the wisdom of an almighty God in the care of my health...

I am down to 2 medications these days...Trazodone, which puts me to sleep, not at the ideal, "black sleep" level, but at least it's rest, and a stimulant medication to keep me awake during the day.

I am better for the changes that I have made in my life. I met many wonderful people who encouraged me along the way. I reached out to others and try to be helpful, even in small or anonymous ways.

Sometimes even today the pain is tremendous. People ask me to describe it, and I can only tell them that it's as though the underside of my skin has a 1st-or-2nd degree burn, or as if I'm covered with ugly purple and black bruises, which are invisible, announcing their presence only upon daily life activities such as standing, sitting, breathing, resting, sleeping, being hugged or any other movement.

I feel as though my kids have suffered enough, so I minimize my complaints unless I'm having a really awful day.

I found out that my local YMCA opens before 6:00AM, and I've begun a mild workout program, bolstered by my memory-foam pillow, of course. The crowd at that hour is mostly made up of seniors, and many of them are there for the same reasons - chronic pain, albeit arthritis. If they can do it, so can I.

I've also learned that I can be in pain, without being one myself.

A dear friend of mine was recently diagnosed with epilepsy. She suffered several serious orthopedic injuries from falling (seizure blackouts, really) before being properly examined. The medications she must take have left her sapped of energy, drive and motivation.

She and I are able to encourage one another, and I explained that it is during these times that God helps us identify our true friends. For the most part, people who have never had a chronic illness will not ever understand the rest of us.

Getting angry about it is going to negatively affect my health. If I held resentments against the ugly doctors and uncaring therapists, it would be akin to drinking poison and waiting for them folks to die.

Each day, I seek joy. And I am grateful to God for each moment of reprieve, when I am so enjoying watching my daughter whispering and giggling with her cousins (she's 13) about the latest movie, that has...dramatic pause..."ROMANCE and KISSING", or talking to my adult son about some new phenomenon in science, or welcoming my dear husband home from work, that I realize how blessed I am.

I agree that there is a lot of ground to make up. Eventually, a major celebrity, politician or athlete will be stricken, and will have the courage to come forward.

In the meantime, continue talking to physicians, pharmacists, researchers, holistic practitioners and other sufferers. Be gentle, but bold.

I live in Southern California, and as my family walked the local marina, I noticed a group of foreign scientists whose medical bags disclosed that they were attending a conference sponsored by the American College of Rheumatology.

I quickly ran up to them and told them that I was counting on their successful research and how it could cause relief to sufferers enduring this spectrum of diseases.

I explained the numbers of patients and their caregivers whose lives had been disrupted and devastated.

The physicians, as it turned out, were European. They were surprised by my forwardness, perhaps thinking me rude. I didn't care. As I finished my plea, but I could tell that I had made an impression on one of them.

Peace and love to you all~
SEPTEMBER 25, 2007

TO: DR. SANJAY GUPTA and
AMY BURKHOLDER, PRODUCER,
MEDICAL NEWS, CNN

RE: CFS/CFIDS ITEM AND BLOG
WHICH BEGAN 09-18-07

At this reading, there are 50 responses in your blog regarding CFS/CFIDS.

Most of them are very sad to read because they detail so much suffering and dysfunction. Problems are experienced at every level - physical, emotional, intellectual, family life, social relationships, mental health, financial and etc.

MAY I NOW SUGGEST THAT YOU CONSIDER A FOLLOW-UP PROGRAM ON CFS/CFIDS THAT FOCUSES ON SOLUTIONS?

Perhaps you could air a program that focuses on solutions for CFS/CFIDS such as:

1- The progress being made in research findings to date on the SOURCES of the disorder, like the genetic findings of the CDC in 2005, viral studies, the differences in blood cells and proteins in patients with the diagnosis etc.

and,

2- Successes in the "treatment" and management of the symptoms in terms of what types of things actually give some relief and make live more "liveable" even though one still has the disorder.

There still seems to be no common treatment and no cure.

Some people mentioned naturopathic/alternative medical approaches. Also helpful would be a discussion of the effect of using nutritional supplements, probiotics, and alternatives for pain management that have aided those with the disorder.
Information is also needed on the role of physical "exercise" which seems to cause a flare-up of symptoms. All these and more could be shared in a blog so that everyone could benefit from the experiences of others with the disorder, and possibly those who attempt to "treat" them.

I think you could perform a great service for all those who suffer this disorder (and those who love them and feel "helpless to help"). Many of those in the blog seemed to indicate that they are "crying out" for some "help". They need to know how to obtain some relief as well as a way to get back to "having a life" again. I know there is hope and you can help them to find it.

My hope is that you will consider this suggestion so that soon we will benefit by another report on the results of your investigative journalism.
Hopefully :> a report such as:

"HOPE FOR CFS/CFIDS -STRATEGIES
FOR RELIEVING THE PAIN AND
DYSFUNCTION OF CFS/CFIDS".


FIBROMYALGIA was also mentioned and seems to often accompany a diagnosis of CFS. Perhaps you could research that relationship also.

THANK YOU FOR YOUR EFFORTS AND THE OPPORTUNITY FOR BLOGGERS TO SHARE THEIR PAINFUL EXPERIENCES. HOPEFULLY THE NEXT REPORT WILL BE A SHARING OF HAPPIER SUCCESSES :>

Sincerely,
S. Marie, MSW
Thanks to all who have written here, I know it must have been a difficult task given the brain fog so many of us must endure. I too have CFS and next month will mark 11 years for me with this illness. If you are looking for information on symptoms, research, support and much more, please visit www.immunesupport.com. It has helped me and I hope it will help you. And please, never give up hope because better treatments, more research and better understanding of this illness are coming!
I have had M.E. (aka CFS) for 32 years, & it has been a downward spiral.
The news items over the last year have given me a glimmer of hope, to know that research teams are looking for an answer.
Having been a virtual hermit for the past several years, it is bittersweet to see the number of people writing here who are in the same boat. On the one hand it is a relief to know I am not alone, on the other I would not wish this on anyone.
I hold very fast to the promises of God : "this illness is not unto death"; "For I know the plans I have for you,... to give you a future & a hope"; "a bruised reed He will not break"; "God hasn't given us a spirit of fear, but of power, of love, & of a sound mind."
Greetings from New Zealand!
I was diagnosed over a year and a half ago though I hadn't felt right for over a year before that. I am a 31 year old woman. I have believed this to be a virus. What else could explain the complete exhaustion, pain etc (so many symptoms) someone feels that just appears out of nowhere like mono? I can pinpoint the moment when I began to feel incapable of doing anything beyond existing.

But I wanted to say: There is hope. A year ago I was unable to walk, I was dizzy all the time, ALL THE TIME, I couldn't cook or bathe or stand, or work on my own, I had trouble sitting because I was just so tired. Of course there were other symptoms: pain, heart palpitations, trouble breathing, chest pain, headaches and migraines, inability to concentrate or even hold a conversation. My boyfriend at the time would have to carry me everywhere. It was horrible. Horrible. Now, though I am not where I was at the peak of health, I can walk and work (from home) and go about my life, have fun (FUN!). I get tired, but I pay attention to my body, so if i need to nap some days, I nap. This is not unlike a 'normal, healthy' person. I attribute this to 3 things:

1. Positive thinking and action (yes, that's what i said. At some point I just started to believe, really believe, that I was getting better even if I felt terrible. I simply refused to accept that it would be that bad for the rest of my life. I wanted to live. I accepted the journey and the lessons I was learning. I began to make myself go out and socialize even though I didn't feel like it.(I just want everyone to be clear too that my problem was not depression. It was CFS. Any depression I felt was a result of the fact that I had felt my life was taken away from me)

2. Specialist treatment: I began to see a chronic fatigue and fibromyalgia specialist (i won't give his name because then my message may be pulled), but he took more blood tests than my health provider was willing to do and found some things were off. He gave me T3 thyroid. Naturally derived.

3. I believe this virus (which as I mentioned it my theory) can go dormant...maybe for a lifetime...if you eat the right things and keep your immune system up. I eat no preservatives, no packaged or fast food anything, no sodas, no booze, very little sugar. I did begin to eat meat which I had not done before...but everything without additives. No dairy.

I'm writing this because people do get better. I have met others who have gotten better. Others who do things like run miles everyday and bikes around town. CFS can be treated, you just have to be aggressive and find the right doctor, do the right things, be positive, and (if necessary) ride the wave out and accept it as an opportunity to learn and grow and realize and appreciate and become a better, stronger, person.
I have had CFS for since 1996 at the age of 35 and it has severely compromised the quality of my life. Once an active athletic and socail being, working and positive individual,living life and feeling that life had unlimited possibilities.. I am not bedridden 80 to 100 percent for eleven years. My life has changed from cognitive and CNS difficulties (a drop in my IQ, finding words,seizure-like episodes,headches, loss of memory, ect.), muscular and joint pain, a passionate heart wanting to participate in life but stuck in a body that has dibilatating weakness, flu-like symptoms almost daily, GI issues and more. Sadly the isolation that comes along with a severe illness that the media, public, family and medical community still does not understand or validate. "If you look great how can you feel so awful?" This illness afffects every pathway in my body. No matter how much money I have spent to find specialist all over the country and have been a lab rat in order to improve my quality of life...their is no cure, there is not enough research and not enough awarenss. The pain, the limitations dictated by my entire body has been relentless and life altering but the worse thing is the lack of awareness by the medical community.
I have had CFS for more than eleven years since 1996. I once was an athlete, artist,traveler, working and social individual feeling life had unlimited possibilities.
CFS has caused me to be bedridden 80-100 Percent during these past 11 years. This illness affects every pathway in my body. This illness affect my CNS, meaing seizure-like episodes, drop in IQ, loss of memory, difficulties in finding the correct word, difficulites and processing my thoughts, headaches, dizziness etc. I live with flu-like symptoms almost daily, muscle and joint pain, and disabling weakness/fatigue. My immune system is compromised so I get infections often. GI issues and much more.
More than anyone could understand, I want to be that active individual the participates in life...I visualize it in my head. I want to speak without difficulties, travel and live the best possible life I can.
I have spent money while being a lab-rat with experimental treatments and seeking out the top doctors in the country so my health would improve. Unforturnately, my health has not improved over the past 11 years. My life has changed with isolation and loss...it's boring being limited to your bed and television most of your life.
Because of the pain and multiple limitations words can't express the affect this illness has on myself and those who love me. There is no CURE and worse of all the medical community is Neglectful and uneduacted on how severe CFS is even after the CDC press conference almost one year ago. The lack of validation from the medical community and the lack of awareness is the worse aspect of the CFS. We need research, a louder voice and doctors who get all the intricate health problems that come with this unforgiving illness.
Sincerely,
Julie Richmond,VA
I've been disabled by CFS and FM since 1991. I was bedridden for the first two years of the illness, and after that, it went to mostly housebound. I got sick at age 21. I am now 38 years old. And I still can't work from this disease.

I suffer from cognitive symptoms, such as, light, sound, scent sensitivity. I have short term memory loss, and audio processing disorder where many times it sounds like everyone is speaking in a foreign language.

I cannot exercise from this disease. And I was at the peak of health when I got sick.

I suffer from constant pain, fatigue, and muscle spasms. I also have the digestive problems and acid reflux. And constant drops in blood pressure has been one of my worst symptoms.

If I'm stressed, I get swollen glands and a whole host of other symptoms.

But one of the worst things I suffer from is the discrimination from my family. I have relatives who do not believe this disease is real. And they are incredibly cruel to me. You can't fake a weakening of the left ventricle of your heart or Hashimoto's hypothyroidism. You can't fake other autoimmune tests.

I wish more than anything else that the public was well informed that this disease is real and disabling, even more disabling than many other conditions out there.
I am 34/female NY. I am constantly tired. It has left me with very few friends. I am a substitute teacher for several years now because I cannot pass my certification exam due to the constant fatigue which I have to deal with everyday. I cannot concentrate on reading well at all. Sometimes I wish I would just pass away because no one understands when you say Im tired. They think its nothing. My body feels like a dead weight. I have gone to many doctors all who dont know and dont care because there is no $ in constant fatigue for them. I am really at the end of my rope. I can hardly get through the day without having to lay down. I need help but no one helps me. I get sore throats very easily. You really cant live when you have no energy. No one understands. This is the worse thing anyone could have. Its like you are invisible and no one cares to help you. I dont know what I am going to do becuase I cannot work everyday anymore due to my tiredness.
If you've taken the time to read this far down, go one step further....

get this book:

The Mindbody Prescription: Healing the Body, Healing the Pain ~ by John E. Sarno

Also consider getting tested for sleep disorder.

~S~
many of you probably have LYME DISEASE. I was told "cfs" and then i went to a GREAT doctor who does not believe in passing out labels such as cfs but looking for an underlying cause. what he found was lyme disease, batonella, chalmydia P, and higher than normal levels of mercury. CFS is a classification umbrella for patients with fatigue. what causes one person's fatigue and illness might not your cause. now i find i have late lyme disease( confirmed by blood tests). it's not enough to be diagnosed cfs, find out WHY the best one can.
anna
I've been tested for everything under the sun. I forced one doctor to do the Lymes test again....still neg.
While one commenter above had a Psychiatrist call Dr. Patricia Salvato a quack (oh and many of mine have too). She is still the only doctor that has given me any hope or relief in almost 10 years! And not once has she ever made me feel I'm insane or an idiot, where all the others have.
I fly from Utah to Houston to see her once or twice a year. It's too bad that other doctors throw out other people's research as bunk without even reading or trying to understand it. Not to mention Dr. Salvato took 3 hours with me on my fist visit and all I had to pay was my $20 deductible...even for the lab work which is done in her office. All the others sent me into financial ruin. It was not necessary.
This illness is not caused by one thing or managed by everyone in the same way. But much has been understood in the last 10 years. Hopefully soon the US government will stop using medical books from 1987 so those of us that can no longer hold gainful employment because of our 'condition' can get disability. A lot has changed in that time.
I do take the Glutathione injections mentioned above, from Dr. Salvato, and they are helping me. Will I ever be able to be 'normal' or work full-time? I don't know. But what I do know is I'm functioning lately where from 2005-2006 I was incapable of the smallest details. And with two small children, that is not acceptable. Right now if this is as good as it will get for me, I can live with this. But two years ago, I didn't want to live any longer if I had to suffer that much that often. Life is getting better. I have real hope for a real future now.
I hope and pray for us all that they can find out more, what caused our constant suffering, and how to actually CURE IT!
God bless you all and your families.
To "Anna" ... I suffer from CFISD/CFS [officially diagnosed for a year and a half now] the FIRST thing my specialist doctor did was to give me a test for Lyme Disease and ruled OUT Lyme Disease!! I think a lot of us on this site could have done without your comment which more or less is stating we are a bunch of dumb butts who haven't done our research. There are numerous tests that doctors who know what they are dealing with can give to determine several things relative to CFS/CFISD: test your Adenosine Triphosphate [ATP] which reveals your energy level; the Glutathione test, your sed rate [for inflamation], etc. There are "normal" levels on these tests and also markers that when low or high are what the docs see in people who have CFS/CFISD. Please give us the benefit of the doubt before you shoot off your comment; this disease is debilitating enough as it is without having to read your crass comment. Thank you!
I too am being treated by Dr. Patricia Salvato and she is NOT a quack. Before I went to Dr. Salvato, three totally different people told me I should go to her; I finally decided it was a definite sign that I needed to go see her.

Prior to that my boyfriend was telling me that I was going to kill myself trying to work. There were days that I just sat at my desk and cried I was in so much pain; other days I couldn't even leave my desk to go to lunch because I didn't have the energy!! I couldn't sleep at night, my heart was palpitating all the time, I had shortness of breath, would fall asleep at my desk from the lack of sleep; I thought I was literally going to fall over and die at work!!

Thank God for Dr. Salvato!! The first thing she did was a test to rule out Lyme Disease; she then did a battery of tests and called me back to her office and confirmed to me how sick I really was - which, after all I had been through [even though it is NOT what I wanted to hear] it was a big sigh of relief. From that day I have not been able to return to work, and part of me is so relieved, partly because of the lack of sympathy I received from my boss and my supervisor. I don't think either of them ever believed I was sick. And to this day I think they still don't believe me - funny huh? Yeah right, like I really would rather give up my independence, my townhouse, go live with my parents, give up all social activities, etc. NO, I would rather be working.

BUT I will say that I have made improvements because of my strong faith and belief that God is going to see me through this thing. I think he is preparing me so that I can witness to other of my great healing.

I have been seeing a lady who is doing biofeedback using the L.I.F.E. system. The first thing she told me that I needed to do was a "parasite" cleanse, which I did. Then I did a "total body cleanse" and I have began to feel better. My numbers are better too.

I am on a litany of herbs and supplements. One supplement that is very helpful is from Dr. Salvato and is called ATP-20. I have accidentially run out of it before and WHAM the CFS hit me like a ton of bricks - so there is some relief out there.

Also, I am in agreement with Dr. Gupta's research that this disease begins in the gut. In my research I have found that "all disease begins in the gut" - I have read this over and over on the internet and in books. And part of the problem I was having was severe constipation. The supplements my biofeedback person has given me has helped me tremendously!

I am in agreement with the person who posted above that you can get better with positive thinking. Yes, it suxs to have CFS/CFISD but I am trying to make the best out of a very bad situation and I truly believe I am going to recover. I HAVE to, I'm not settling for anything but. I think if we do our best to adjust our attitudes then we are making a big step in the right direction.

Also, I have found that there are support groups out there for CFS/CFISD. For those out there who do not have support from friends or family please try your church or counseling or try to find some sort of support group. Ask for help!! You've got to try!! I'm sorry, I just feel for the people out there whose stories I read who do not have support.

Keep your chin up; do research on the net; read books, watch Joel Osteen on t.v.!! Serious! I'll be praying for you all. Tessa
TO 34/FEMALE NY. Is there any way you can travel to Houston Texas to see Dr. Patricia Salvato? She can help you!! She is listed and you could find her; OR she may be able to recommend someone who could help you in NY!! You obviously DO have CFS and NO you can't continue to work. Do you have family who could help you out? Check out resources in NY, your church? There is a supplement called ATP-20 that helps - Dr. Salvato can get it for you! Also, look into doing some "cleansing" ... you need to do a "parasite" cleanse and also take probiotics. Garden of Life has the best probiotics, get Primal Defense!! It's all on the internet.

There is the FMLA - Family Medical Leave Act. If you can get a diagnosis and take a leave that is a start to get some rest.
My job paid me for about two and a half months; then after six months I had to file for long term disability and also social security disability. I prayed for God's help and He helped me. I was "awarded" -as they say at the social security office- disability benefits after a record 51 days after I filed my claim. It took a little longer on the long term disability - 5 months to be exact - they are sticklers but you have to have faith that God will see you though it and He will. Please do not give up!! I wish I could help you more. The best advice I can give you is to contact Dr. Patricia Salvato in Houston, Texas!! Good luck! I'll be praying for you!!
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