Do you have Chronic Fatigue Syndrome?

[survivor999]

http://www.cdc.gov/cfs/
Please explain

[otohara]

1. I Have Post Polio Syndrome, They Think Many People

who had mild cases of polio, now have CFS. I had full blown polio, but i do know a couple of people who now have CFS, and had mild cases of polio as children.

[seemslikeadream]

6. I did too otohara

was near death from polio at age 10. No lasting effects from polio (that I know of?)but may other health problems. I would appreciate it if you could pm me if you have any info that might be of help to me. Thanks

[catmother]

46. i have chronic fatigue syndrome. i also have scoliosis. some

of my docs think i might have had undiagnosed polio and then i would have post polio syndrome. whatever it is it sucks.

[PCIntern]

2. Yes...

I was a very early case, 1982, and went thru the usual crap before I got to a Doc who said to me, "You're sick...I don't know with what, but you're sick. Loooks like mono, but not quite." I had night sweats for over a year until one night I 'cured' them with HYPERthermia, serendipitously I might add. I drank about 8 cups of really hot tea and drove my temp way up and it plunged down to about 92. Although the bedsheets were soaking wet with sweat, and it took 3 years to get 98.6 back as a normal temp, I felt better.

There's much more...but I can't go into it now.


anyone who wants to send me a PM about this can.

[colbertforpresident]

3. chronic fatigue

chronic fatigue may be due to Lyme disease. It's an epidemic.
Most people with lyme disease don't even know they have it and
most doctors don't know how to diagnose it.

[uppityperson]

7. Indeed, welcome to DU and thyroid problems can cause CFS

Lots of reasons, agree that Lyme can cause it and most docs don't know how to diagnose or treat it. Also, low thyroid hormone levels can cause it.

[u4ic]

34. Thyroid problems don't cause CFS

the opposite, actually...

If one has CFS and is 'cured' by thyroid meds, then they didn't have it in the first place. Some similarity in symptoms doesn't make it the same illness...:hi:

[uppityperson]

35. True, meant CFS symptoms

You may be diagnosed as CFS, may think you have it since you have all the symptoms. It is worth getting a full thyroid panel done (tsh, t4, t3 minimum) to see how your levels are, then modify if needed. Low thyriod can cause all sorts of heck.

[u4ic]

41. Absolutely

also free T3, T4 too.

That's the problem with the 1994 CDC definition, it broadened up the spectrum, used 'fatigue' as the most prevalent hallmark and downplayed or ignored many other symptoms, esp the cardiovascular and neurological ones.

It became sort of a 'wastebasket' disease; problems occuring when either physicians knew that as such, and weren't taking their patients seriously; or patients who were being diagnosed as CFS when in fact they had other conditions which could have been corrected.

There is some interesting research going on now; I won't say a cure will be found just yet, but perhaps better diagnosis and treatment.

[me b zola]

22. Let me be the first....

Welcome to DU, colbertforpresident! :toast:

[colbertforpresident]

26. welcome to DU

Thank you for the welcome

[Sydnie]

29. You can diagnosis Lyme with a simple blood test

My daughter has contracted it twice so far in her short 14 years of life. The first time, it took a blood test to confirm it as the doctor had misdiagnosed it. The second time, we knew what it was days after the exposure.

Lyme is not always easily detectable at the onset, but a blood test will confirm or deny the probablilty that some one has it.

Welcome to DU. :hi:

[pitohui]

30. maybe "you" can diagnose lyme w. a simple blood test

it is in fact not always simple to diagnose and as a result one of my relatives is permanently incapacitated by chronic fatique syndrome caused by untreated lyme disease

she KNEW it was lyme disease, she lived in freakin connnecticut for the love of jeebus but she was in a "study" and the doctors knew better, by the time they did administer the test and then the antibiotic too much time had passed, the neurological symptoms were hers forever

it angers me that antibiotics are RX only in this country, she could have saved herself but the doctors barred the door to treatment

it is easily and frequently misdiagnosed, apparently esp. in females, we're all depressed ya know

[survivor999]

31. What do you mean? She was in a control group

in a clinical trial? Was there any malpractice involved?...

[Sydnie]

32. That sucks

What kind of "study" was she in that they would allow that to happen? Why did she continue with the study and not seek other help? Having seen what it can do to you, I would have moved heaven and earth to get help for my daughter both times.

The first time my daughter had it, it took weeks for them to admit what I knew and test her for Lyme. She ended up with head MRI's to make sure that there was no damage to her brain. It was a scary time for sure. She was only five at the time and it was hard to explain to her just what was happening and why she was constantly hungry but would throw up as soon as she ate anything. I was pissed that they misdiagnosed it too.

I do know a woman that has developed full blown symptoms as well. It sucks BIG TIME. She has all the classic symptoms, the fatigue, the nausea, the joint pains and the mental confusion that comes and goes.

Wasn't there a story not long ago that talked about Lyme actually being an engineered disease that was released by accident in Lyme, Conn, thus the name?

[uppityperson]

37. Not exactly. Positive means yes, negative means we don't know.

If you have a positive test result, this means you have it, but it is not uncommon to get a negative even if you do have it.

I have a couple friends who had to fight to get a test done, even offering to pay for it themselves, then the tests came back negative and they had to travel to a high-lyme area to get diagnosed and treated by someone who knew more about it.

[newyawker99]

43. Hi colbertforpresident!!

Welcome to DU!! :toast:

[catmother]

44. i've read that. there is a doctor who says that it's lyme disease

that was not diagnosed properly. i was tested for "lyme". i was negative.

[OPERATIONMINDCRIME]

4. Yes, Severely.

Started right around when I was 18. I wouldn't wish it on my worst enemy.

[survivor999]

13. Was there a specific event

that started it all, if you remember? Like a disease or something else?

[OPERATIONMINDCRIME]

15. Not Really Sure. I Think It May Have Been Linked To My Stopping HGH

therapy. I've never really been sure and my memory is a bit hazy now looking back (13 years ago) but I know I started really having fatigue problems at around 18 and it started getting worse from there. When I think back to around that time the only thing I can link it to is that I had stopped the Growth Hormone therapy I had been on for 10 years.

[OPERATIONMINDCRIME]

5. And To Those That Say It Doesn't Exist, Shame On You.

Yeah, just because you're in your own little comfortable world with no clue about the condition means that it doesn't exist. I can't think of anything more arrogantly ignorant.

[KT2000]

48. Hooray and thanks for that!

What happened that made "believing" someone else's illness or not was in any way OK.
But I know someone who does not believe people are really paralyzed. She thinks they are not trying hard enough!

Anyone who has CFS, Fibromyalgia, chemical sensitivity learns quickly that a lot more than science goes into the medical understanding of these illnesses - such as political/economic (CORPORATE) pressure.

In medicine there are "party lines" that must be adopted concerning these illnesses. They are communicated in journals through articles that are called "review of the literature." The author begins with a premise that negates the reality of the illness and uses the lack of data to back up the premise.
Great minds at work!

At one time TB was considered a condition of people with lax morals and artistic tendencies.

[Karenca]

8. Yes------From PTSD. nt

[Quixote1818]

9. I have heard that Chronic-Fatigue is much worse than just feeling tired

When you have Chronic-Fatigue it's more than just feeling tired, you feel yucky and tired at the same time. I get that feeling a couple of times a month but certainly not frequently.


I use to be in a job I absolutely hated and I did feel yucky and tired most of the time. I think it has a lot to do with psychology and depression.

[mcscajun]

17. You are correct; it's about more than just being tired.

The fatigue of CFS is accompanied by characteristic symptoms lasting at least six months. These symptoms include:

* difficulties with memory and concentration
* problems with sleep
* persistent muscle pain
* joint pain (without redness or swelling)
* headaches
* tender lymph nodes
* increased malaise (fatigue and sickness) following exertion
* sore throat

Other Symptoms

The symptoms listed above are the symptoms used to diagnose this illness. However, many CFS patients may experience other symptoms, including:

* irritable bowel
* depression or psychological problems (irritability, mood swings, anxiety, panic attacks)
* chills and night sweats
* visual disturbances (blurring, sensitivity to light, eye pain)
* allergies or sensitivities to foods, odors, chemicals, medications or noise
* brain fog (feeling like you're in a mental fog)
* difficulty maintaining upright position, dizziness, balance problems or fainting

http://www.cdc.gov/cfs/

[colbertforpresident]

27. Lyme Disease symptoms

Symptoms of Lyme Disease
The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)
Rash at site of bite
Rashes on other parts of your body
Rash basically circular and spreading out (or generalized)
Raised rash, disappearing and recurring


Head, Face, Neck


Unexplained hair loss
Headache, mild or severe, Seizures
Pressure in Head, White Matter Lesions in Head (MRI)
Twitching of facial or other muscles
Facial paralysis (Bell's Palsy)
Tingling of nose, (tip of) tongue, cheek or facial flushing
Stiff or painful neck
Jaw pain or stiffness
Dental problems (unexplained)
Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose


Eyes/Vision


Double or blurry vision
Increased floating spots
Pain in eyes, or swelling around eyes
Oversensitivity to light
Flashing lights/Peripheral waves/phantom images in corner of eyes


Ears/Hearing


Decreased hearing in one or both ears, plugged ears
Buzzing in ears
Pain in ears, oversensitivity to sounds
Ringing in one or both ears


Digestive and Excretory Systems


Diarrhea
Constipation
Irritable bladder (trouble starting, stopping) or Interstitial cystitis
Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)


Musculoskeletal System


Bone pain, joint pain or swelling, carpal tunnel syndrome
Stiffness of joints, back, neck, tennis elbow
Muscle pain or cramps, (Fibromyalgia)


Respiratory and Circulatory Systems


Shortness of breath, can't get full/satisfying breath, cough
Chest pain or rib soreness
Night sweats or unexplained chills
Heart palpitations or extra beats
Endocarditis, Heart blockage


Neurologic System


Tremors or unexplained shaking
Burning or stabbing sensations in the body
Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
Pressure in the head
Numbness in body, tingling, pinpricks
Poor balance, dizziness, difficulty walking
Increased motion sickness
Lightheadedness, wooziness


Psychological well-being


Mood swings, irritability, bi-polar disorder
Unusual depression
Disorientation (getting or feeling lost)
Feeling as if you are losing your mind
Over-emotional reactions, crying easily
Too much sleep, or insomnia
Difficulty falling or staying asleep
Narcolepsy, sleep apnea
Panic attacks, anxiety


Mental Capability


Memory loss (short or long term)
Confusion, difficulty in thinking
Difficulty with concentration or reading
Going to the wrong place
Speech difficulty (slurred or slow)
Stammering speech
Forgetting how to perform simple tasks


Reproduction and Sexuality


Loss of sex drive
Sexual dysfunction
Unexplained menstral pain, irregularity
Unexplained breast pain, discharge
Testicular or pelvic pain


General Well-being


Unexplained weight gain, loss
Extreme fatigue
Swollen glands/lymph nodes
Unexplained fevers (high or low grade)
Continual infections (sinus, kidney, eye, etc.)
Symptoms seem to change, come and go
Pain migrates (moves) to different body parts
Early on, experienced a "flu-like" illness, after which you have not since felt well.
Low body temperature

Allergies/Chemical sensitivities

Increased affect from alcohol and possible worse hangover

[uppityperson]

39. Amy Tan, Joy Luck Club author finally got diag/treated for lyme,link story

http://www.amytan.net/LymeDisease.aspx

Amy Tan on Lyme Disease

I have late-stage neuroborreliosis. I have had this disease since 1999.

My case is in many ways typical. Like many, I had little awareness of Lyme disease, for I did not live in what was considered the tick-infested hotbeds on the East Coast. I am a Californian -that’s where I file my taxes- and I live among the hills of San Francisco with its tick-free, concrete sidewalks. For a good long while it did not seem significant that I also have a home in New York, that I weekend in the country, and my main form of exercise is hiking. In addition to trekking in the woodlands of Mendocino, Sonoma, and Santa Cruz counties in California, I have also sojourned to leafy spots in Connecticut and upstate New York. I once loved to sit in the tall grass next to the river, and lean my back against a shady oak tree.

I passed off my early symptoms -a stiff neck, insomnia, a constant headache, and a bad back followed by a frozen shoulder- as the unpleasant aftermath of too much airplane travel. I was often tired and jittery, but that, I reasoned, was the consequence of an active and exciting life. Who was I to complain? I had a wonderful life, a great husband, lovely homes, a successful career. I was rarely sick and went to the doctor only for my annual checkup. Even when I came down with the fever, aches and pains of the "flu" earlier in the summer, I had managed to beat it back without developing any of the respiratory sequelae. What a great immune system I had!

When my feet grew tingly and then numb, I mentioned to my doctor that I had had an unusual rash earlier that year. It had begun with a tiny black dot that I guessed might have been a pinprick-sized blood blister. It grew more rounded as it filled, and then I either scratched it out or it fell out on its own, leaving a tiny pit and a growing red rash, which, curiously, did not itch, but lasted a month. Because that rash seemed so unusual, as did my neuropathy, I wondered aloud whether they were related. My doctor said no.(more at link, good to read, hope she is getting better)

[Faux pas]

10. I have fibromyalgia, which they think is related to CFS. I also was

just diagnosed with a totally whacked out thyroid, scored 22.7 out of a possible 5. I'm pretty sure the fibro was caused by PTSD, I've been in 11 (eleven) car accidents. LOL, yes, I'm thankful to be walking.

[uppityperson]

11. once you get your thyroid settled down, should be much better

chronic fatigue, depression, fibomyalgia, carpal tunnel, all these can be related to thyroid malfunction.

[Faux pas]

12. Thanks uppity, that's what I'm hoping for. It's amazing how badly

those pesky little hormones can mess you up.

[uppityperson]

14. minor tiny bits that control a lot of stuff

Common perception is thyroid hormones control weight and temperature only. balogna. Sometimes you have to try a couple kinds of medicine to find one that works also. Good luck!

[Faux pas]

25. Thank you, I'll take all the luck anyone can spare. I go for the

nuclear imaging the 29th and 30th....not looking forward to it, but, if it helps me find a way to feel human (what a concept) again, I'll be brave. LOL

You live anywhere near Gig Harbor? Have friends up that way.

[Lorien]

38. But not always. I suffer from three of those conditions and my thyroid

is perfectly fine. :shrug:

[uppityperson]

40. not always, but can contribute.

at least 1/3 adults in USA have thyroid problems, many unknown, and most doctors/blood tests aren't diagnostic as they should be. Laboratory (something something association?) has put out a notice to change "normals" as they are too broad, too many people have "normal" tests yet suffer symtpoms. Then the "prefered" treatement for hypothyroid is synthetic thyroid hormone which does work well for many, but doesn't for enough that natural should be considered more often. Natural is made of dessicated pig thyroid glands, leading to a problem for a strict vegetarian, and is not as closely calibrated as synthetics are, but it has little bits of stuff that synthetic doesn't that is needed for many of us. Both synthetic and natural are very cheap also, I pay $11 for 3 months worth.

So, there you go.

[mcscajun]

16. I was "always tired" and always yawning throughout the day for years

but last year, I was diagnosed with "sleep disordered breathing" -- meaning I had numerous episodes of shallow breathing during the night, leaving my brain deprived of the appropriate levels of oxygen, and accounting for my tossing and turning, minor bouts with insomnia, bizarre and vivid dreams, and other problems. I thought I was getting enough hours in, but hours don't count if your sleep is not "productive".

Unless you have a lot more symptoms of CFS than just fatigue and headaches, get a sleep study done. It's painless. :) If they don't find anything, then move on to other possibilities.

[marions ghost]

18. excellent point

my Dad has always complained of fatigue for years. But when he sleeps at night he often wakes himself up and pops up and down all night long, often reports bizarre dreams. I think he has sleep apnea. He scoffs but I think he should see a doctor about it. On the other hand, I wouldn't like to see him taking drugs for sleeping as it wouldn't be such a good idea with other health issues.

[mcscajun]

20. Drugs are the least likely of prescriptions to be made

for sleep disturbances IF he gets the right doctor and sleep apnea or sleep disordered breathing is diagnosed. Restless leg syndrome is a whole other matter. As to sleep disordered breathing, whether hypopnea or full-blown apnea, there are a variety of non-medication treatments. CPAP is one of these.

If CPAP (Continuous Positive Airway Pressure) or BIPAP (Bilevel Positive Airway Pressure) is prescribed and tolerated it will correct most sleep disordered breathing without medication.

Take a look here, and maybe show this to your Dad. Good health to him. :)

http://www.entnet.org/healthinfo/snoring/cpap.cfm

http://www.cpaptalk.com

[marions ghost]

21. thank you!

I had no idea there was something other than chemicals for sleep disorders. I will show my Dad this info as a way to get him interested in the subject again. I'm convinced he really doesn't have to suffer so much with this problem. It makes having to be around him for extended periods difficult because I never know what his energy level will be like. Often if he's had a particularly restless night it takes him a day to recover...then he's OK the next day, then he's a cranky zombie the next...a roller coaster. He is partnerless so visits us kids a lot, and the time will come when he's with us (or another sister) all the time. So I'd like to see him get a handle on this. In other ways he's a joy to be around, funny, wise and very with it for his age. His memory is phenomenal, despite this chronic sleep deprivation problem. I call Dad "the midnight rambler" but really, this disordered sleep thing is not a joke.

Again thanks for reply. :)

[mcscajun]

23. You're welcome. I'd be curious to hear follow-up, if you are so

inclined. :)

[marions ghost]

24. I'll make a note of that mcscajun...

n/t

[Swamp Rat]

19. I have chronic B.S.

Bushler Syndrome

[OhioChick]

28. I have FMS, which is similar...

My child has MPD. (Myofascial Pain Dysfunction)

Prof. Garth L. Nicolson has done some extensive research regarding some of these disorders and the connection to Mycoplasmal infections.

Chronic fatigue is reported by 20% of all patients seeking medical care and is considered as a nonspecific sign that is associated with many well known medical conditions. Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME), and Fibromyalgia Syndrome (FMS) patients suffer from complex overlapping signs and symptoms. (see 'Signs/Symptoms' Questions, above) CFS is primarily characterized by persisting or relapsing fatigue without previous history of comparable symptoms that does not resolve with rest. In these patients other clinical conditions are absent that can explain the signs and symptoms such as malignancies or autoimmune diseases. In contrast, FMS patients have overall muscle pain, tenderness, and weakness as primary complaints, but they have most if not all of the commonly found signs and symptoms for CFS. We previously proposed that CFS/ME patients might be suffering from chronic infections that can cause, in part, their complex signs and symptoms. For example, systemic mycoplasmal infections can cause chronic fatigue, muscle pain and a variety of additional signs and symptoms, some of which are related to dysfunctional immune responses and in extreme cases autoimmune-like disorders. Some mycoplasmas can invade virtually every human tissue and can compromise the immune system, permitting opportunistic infections by other bacteria, viruses, fungi and yeast. When mycoplasmas exit certain cells, such as synovial cells, nerve cells, among others that can be infected, they can stimulate autoimmune response. Our recently published studies demonstrated a possible link between mycoplasmal infections and CFS and FMS, since we found high frequencies of mycoplasmal infections in these patients. Previously we examined patients with chronic illnesses for the presence of mycoplasmal infections. We found that about one half of patients with Gulf War Illness and two third of patients with CFS/ME and FMS were positive for mycoplasmal infections in their blood. The Gulf War Veterans suffer from signs and symptoms similar to patients diagnosed with CFS and FMS. They can be treated using antibiotics effective against mycoplasmal infections, and once they recover, their blood is no longer positive for the presence of mycoplasmal infections. Our recent results indicate that Rheumatoid Arthritis is also associated with mycoplasmal infections. (see 'Autoimmune Diseases')

Recent reports and publications indicate that in addition to mycoplasmal infections, CFS/ME and FMS patients have other chronic infections caused by other intracellular bacteria and viruses. For example, patients with Lyme Disease, caused by intracellular Borrelia infections, have been diagnosed with CFS/ME. Also, CFS/ME and FMS patients can have intracellular Chlamydia species infections. These patients can also have infections by other bacteria that enter their bodies through 'leaky gut' problems. Chronically ill patients often have inflammatory bowel syndrome and other gut problems, and this can allow pathogenic bacteria to enter their systems.

Patients with CFS/ME and FMS can also have viral infections that complicate their conditions and cause morbidity. Such infections can occur with or without the bacterial infections described above. Viruses that have been associated with CFS/ME and FMS are Human Herpes Virus-6 (HHV-6) and Cytomeglovirus (CMV). These viruses have been found at high incidence in chronically ill patients, and especially those with CFS/ME. Patients with CFS/ME or FMS can have predominantly intracellular bacterial infections, predominantly viral infections, or a combination of intracellular bacterial and viral infections. This may be one reason why the underlying causes of these chronic illnesses are so difficult to determine and effectively treat. The other reason could be the persistent nature of the infections and their ability to hide inside cells where they are essentially refractory to immune system responses, their slow growing natures and their relative insensitivity to therapeutic drugs (see references below).
http://www.immed.org/illness/fatigue_illness_research.html

[u4ic]

33. Yes

Going on 15 years. I've been through the wringer, from being almost completely bedridden to being able to work f/t (work only, not enough strength for a social life or hobbies); and everything in between.

Don't use the CDC definition - the Canadian Clinical Definition is by far the most comprehensive and specific. The CDC changed it in 1994, and it broadened the spectrum; many people were being diagnosed with it that really didn't have it at all.

It isn't just about being tired, it is a neuro-endocrine immune disorder, affecting those systems. (fyi, M.E. is Myalgic Encephalomyelitis, what CFS/CFIDS is known as in most other countries; some would argue that it is a subset of CFS.

There is also evidence of either a hit and run injury to the brain from a virus, and/or a virus attacking the heart, as many have diastolic cardiomyopathy. (or that could be another subset)



The Canadian Expert Consensus Panel has published a medical milestone, the first clinical case definition for the disease known as myalgic encephalomyelitis/chronic fatigue syndrome. This definition is clearly a vast improvement over the CDC's 1994 Fukuda criteria, which led to misunderstanding in both research and treatment modalities by making "fatigue" a compulsory symptom but by downplaying or making optional the disease's hallmark of post-exertional sickness and other cardinal ME/CFS symptoms. In sharp contrast to the Fukuda criteria, this new clinical case definition makes it compulsory that in order to be diagnosed with ME/CFS, a patient must become symptomatically ill after exercise and must also have neurological, neurocognitive, neuroendocrine, dysautonomic, circulatory, and immune manifestations. In short, symptoms other than fatigue must be present for a patient to meet the criteria. The complete 109-page article "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols," was published in the Journal of Chronic Fatigue Syndrome, Vol. 11 (1) 2003, pp. 7-116.


1. POST-EXERTIONAL MALAISE AND FATIGUE: There is a loss of physical and mental stamina, rapid muscular and cognitive fatigability, post-exertional fatigue, malaise and/or pain, and a tendency for other symptoms to worsen. A pathologically slow recovery period (it takes more than 24 hours to recover). Symptoms exacerbated by stress of any kind. Patient must have a marked degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level.

2. SLEEP DISORDER: Unrefreshing sleep or poor sleep quality; rhythm disturbance.

3. PAIN: Arthralgia and/or myalgia without clinical evidence of inflammatory responses of joint swelling or redness. Pain can be experienced in the muscles, joints, or neck and is sometimes migratory in nature. Often, there are significant headaches of new type, pattern, or severity.

4. NEUROLOGICAL/COGNITIVE MANIFESTATIONS: Two or more of the following difficulties should be present: confusion, impairment of concentration and short-term memory consolidation, difficulty with information processing, categorizing, and word retrieval, intermittent dyslexia, perceptual/sensory disturbances, disorientation, and ataxia. There may be overload phenomena: informational, cognitive, and sensory overload -- e.g., photophobia and hypersensitivity to noise -- and/or emotional overload which may lead to relapses and/or anxiety.

5. AT LEAST ONE SYMPTOM OUT OF TWO OF THE FOLLOWING CATEGORIES:

AUTONOMIC MANIFESTATIONS: Orthostatic Intolerance: e.g., neurally mediated hypotension (NMH), postural orthostatic tachycardia syndrome (POTS), delayed postural hypotension, vertigo, light-headedness, extreme pallor, intestinal or bladder disturbances with or without irritable bowel syndrome (IBS) or bladder dysfunction, palpitations with or without cardiac arrhythmia, vasomotor instability, and respiratory irregularities.

NEUROENDOCRINE MANIFESTATIONS: loss of thermostatic stability, heat/cold intolerance, anorexia or abnormal appetite, marked weight change, hypoglycemia, loss of adaptability and tolerance for stress, worsening of symptoms with stress and slow recovery, and emotional lability.

IMMUNE MANIFESTATIONS: tender lymph nodes, sore throat, flu-like symptoms, general malaise, development of new allergies or changes in status of old ones, and hypersensitivity to medications and/or chemicals.

6. The illness persists for at least 6 months. It usually has an acute onset, but onset also may be gradual. Preliminary diagnosis may be possible earlier. The disturbances generally form symptom clusters that are often unique to a particular patient. The manifestations may fluctuate and change over time. Symptoms exacerbate with exertion or stress.


This summary is paraphrased from Dr. Kenny van DeMeirleir's book Chronic Fatigue Syndrome: A Biological Approach, February 2002, CRC Press, pg. 275. A few edits and suggestions were added by the M.E. Society of America. As we have noted, the M.E. Society of America holds that this is the best case definition so far, although it is not perfect. Listing more cardiac and neurological symptoms (e.g., chest pain, left-side chest aches, tachycardia, and neuropathy pain), and emphasizing muscle weakness and faintness instead of “fatigue,” would have more accurately represented the symptomatology and vastly improved the criteria (please see our M.E. Definitional Framework on this website). Nevertheless, the Canadian Consensus Panel clinical case definition more accurately represents the experience and manifestations of the disease than other current case definitions. Again, for the 30-page diagnostic ME/CFS case definition click
http://www.cfids-cab.org/MESA/ccpccd.pdf

http://www.cfids-cab.org/MESA/ccpc.html

[Lorien]

36. Yep, CFS and fibromyalgia. n/t

[hyphenate]

42. Fibromyalgia and CFS are

supposedly two different fronts of the same ailment. I have symptoms of both. And yes, I was diagnosed over 13 years ago.

Sometimes the pain is debilitating, sometimes its the exhaustion. Lately it's the exhaustion.

[lonestarnot]

45. Couldn't be because I work my ass off 24/7 could it?

[catmother]

47. i've had it for 17 years. about a year and a half before i left

new york, i got a job at 30 rockefeller plaza. the floor i was working on was under construction. it's an old building. some areas where they were working had big plastic sheets around it. shortly after starting work there i became ill. i was in and out of work. finally i was diagnosed with walking pneumonia. it took months of antibiotics to recover. and i never felt the same after that. when i moved to phoenix, i was here about 5 weeks and i took ill one night. i couldn't get warm. had on pajamas, a robe, the fireplace was on and we pulled out an electric heater that we brought from new york. i was in bed for days and finally a neighbor took me to a doctor. again i had pneumonia. the doc was a naturapath and pulled me through with natural means. about another year later i came down with it again. this time i went to my DO who suggested i get a pneumonia shot. i did -- haven't had pneumonia since, but my naturapath and a CFS specialist diagnosed me with CFS. they did all kinds of tests, had to rule out lupus, and MS and all those great things. i get good days and bad days. i have to sleep at least 10 hours and stress sets it in motion. as i've gotten older it's gotten worse.

i have to take some pretty heavy dose drugs every night to sleep. i've tried all kinds of things. i eat healthy. i take tons of vitamins. tried all kinds of things that were supposed to help. nothing did. so i just take the attitude that things could be worse. i am a member of the CFIDS association and get all their newsletters. my doc attends all the conferences and let's me know if anything new is working for people.

i have not worked in 17 years.

the reason i mentioned the construction in the building is because there might have been asbestos, or who knows what in a building that old.