Wednesday, September 28, 2005

Lyme Disease and Its Link to Fibromyalgia, Chronic Fatigue and Immune Dysfunction Syndrome and Chronic Fatigue

Symptoms sound oh so familiar...Lyme Disease and Its Link to Fibromyalgia, Chronic Fatigue and Immune Dysfunction Syndrome and Unrelenting Fatigue: "Patients with chronic Lyme disease most commonly have fatigue, joint and muscle pain, sleep disorders and cognitive problems, also known as 'brain fog'. In addition, infection with Borrelia often results in a low grade encephalopathy (infection of the brain) that can cause depression, bipolar disorder, panic attacks, numbness, tingling, burning, weakness, or twitching. It can also be associated with neurological disorders such as multiple sclerosis, dementia, such as Alzheimer's disease, and amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease). The infection often results in hormonal deficiencies, abnormal activation of coagulation and immune dysfunction, which can contribute to the cause of the symptoms.


Patients with chronic Lyme disease often complain of 'strange' or 'weird' symptoms that cannot be explained even after going to numerous doctors and often results in the patient being told that it is psychological. Patients are often told that they are hypochondriacs and are referred to psychiatrists and counselors for treatment....

To adequately detect and treat chronic Lyme disease, Physicians must understand that standard tests will miss the majority of these cases and standard treatment will fail the majority of the time. One must undergo more specialized testing and a multi-system integrative treatment approach to achieve success in the majority of patients."

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Thursday, September 22, 2005

Fibromyalgia - Fibromyalgia treatment UK

Fibromyalgia - Fibromyalgia treatment UK: "Chartered Physiotherapist and Nutritional Advisor, based in Derby, England. I was a sufferer of Fibromyalgia myself for over twenty years before I developed my Combination Approach, which helped me to attain better health than I had ever known."

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Fibromyalgia Forum : Ways to treat it....

Fibromyalgia Forum : Ways to treat it....: "How is it treated?
With:

1) Medication to improve deep sleep.

2) Regular sleep hours and an adequate amount of sleep.

3) Daily gentle aerobic exercise and stretching.

4) Avoidance of over exertion and stress.

5) Treatment of any coexisting sleep disorders.

6) Patient education.

Medication by itself is of little value in treating fibromyalgia. Successful treatment demands the patient's active involvement in treatment as well as lifestyle changes. Each of the six parts of treatment above is important. If any one is omitted, the chance of significant improvement is considerably reduced.


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Medications
A number of medications have been used to improve sleep in fibromyalgia. The oldest of these is amitriptyline (Elavil), a medication first used to treat depression. Amitriptyline and related medications probably work by improving the quality and depth of deep sleep rather than by any effect on mood. Although it probably works as well as any of the other medications, amitriptyline causes frequent bothersome side effects such as weight gain, dry mouth, daytime tiredness, and trouble concentrating more often than other medications with durations of action more appropriate for sleep so I usually try these other medications first. They include trazodone (Desyrel), diphenhydramine (Benadryl), cyclobenzaprine (Flexeril), alprazolam (Xanax), and carisoprodol (Soma).

Medication is started at a low dose and gradually increased until you sleep well at night and feel good during the day, encounter unacceptable side effects, or reach the prescribed maximum dose. Starting low and slow helps minimize initial side effects such as dizziness, nausea, and morning grogginess. By two to four weeks, most patients find that the side effects are settling down and the fibromyalgia symptoms are starting to improve.

It often takes a lot of fiddling with the dose to get it exactly right. It may be necessary to try several medications in succession or sometimes in combination. Some patients find that certain of these medications cause stimulation rather than sedation, as if one has had too many cups of coffee. When this "paradoxical effect" occurs it will be necessary to switch to another medication. Some medications may become less effective over time and the dose may then need to be increased slightly. Most patients will need to continue medication indefinitely, although sometimes the dose can be reduced once a good response to treatment has been achieved.

Some patients report that they find various herbal and other "alternative" remedies helpful. While I can't recommend such treatments because they haven't been adequately studied for efficacy or long term harm, I don't discourage patients from using them if they find them helpful. I would encourage you to try treatments for which there is scientific proof of efficacy first, though. The large majority of alternative treatments appear to be of no use or have no more than a placebo effect and are simply a waste of money."

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Taking charge of your Fibromyalgia

Inspiring....Fibromyalgia Online - NFA Newsletter: "Think of it this way for a moment: You have fibromyalgia, but it doesn�t have to have you. Taking charge of your life and being involved in an occupation keeps FM from owning you, defining you, and changing who you really are!

Even taking your health-related limitations and challenges into consideration, there are still many ways you might be able to make adjustments to a career you already have, or to explore the possibilities of finding an entirely new occupation! This might even be an opportunity to create your own business or pursue previously unrealized talents, skills and expertise you might otherwise never have tapped into!

It is absolutely possible for you to create a fulfilling, balanced and abundant life for yourself, despite having FM. You can learn to live beyond simply coping.

The point is then to find a job that maximizes your interests and talents, and does not aggravate your symptoms, or creates persistent high levels of stress, and allows for regular breaks or rest periods. The need is for a job that has some flexibility built into it....

The key here is to identify and define things that you really enjoy, and then find ways to make them happen! Set realistic goals for yourself and know your own limits, but keep your focus on those things that you are able to do, and be creative in your approach.

Acknowledge and deal with any feelings of negativity and don’t let them turn into roadblocks. Get them out of your head, into the open, and ask yourself why you feel that way, and if there is another way to look at the problem before you internalize, personalize, or react in a manner that will restrict your ability to succeed. Most of all, focus on your positives, acknowledge yourself, and celebrate every single thing that you achieve!

There are nearly endless possibilities for meaningful and purposeful employment for you to explore, and the possibilities are limited only by your imagination.

Above all else, remember this: You may have fibromyalgia, but it doesn’t have you!

Eve Reddin is a certified life coach who specializes in working with people whose lives are affected by life-altering illness. Eve is a stroke survivor and has both fibromyalgia and lupus. Her mission is to help others learn how to live richly rewarding lives beyond simply coping. For more information, go to www.abundant-life-coaching.net."

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Fibromyalgia on the job

Fibromyalgia Online - NFA Newsletter: "Stress, contorted positions, and repetitive motions can combine to cause fibromyalgia flare-ups—but there are ways to prevent your job from making you feel worse.

“When you have fibromyalgia and you’re in the workplace, you need to be aware of what bothers you,” says Barbara L. Kornblau, president of the American Occupational Therapy Association.

Kornblau, who has FM, recommends keeping a diary for about a week. Record what you are doing and how you feel every 15 minutes or so. At the end of the week, that document will show you what time of day you’re in the most pain, which day of the week is the most stressful, and which activities are the most uncomfortable for you.

With that knowledge, you can approach your boss with a request for accommodation, or turn to an occupational therapist or ergonomic consultant for advice."

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Fibromyalgia & Work

So pertinant right now....Fibromyalgia Online - NFA Newsletter: "To Work or Not to WorkIs That Your Question?"


Research studies carried out to assess the importance of work for women with fibromyalgia seemed to indicate that I was not the only one with these thoughts. In the year 2000 Swedish researchers Dr Henriksson and Dr Liedberg interviewed 176 women with fibromyalgia regarding their symptoms, sickness benefits, work situation, work conditions and adjustments, opinions regarding their own work ability, and satisfaction with the situation. These women reported the classic symptoms of fibromyalgia: pain, poor quality of sleep, abnormal tiredness, muscle stiffness, and increased pain after muscle exertion. Twenty-three percent gave fibromyalgia as the main reason for not working, which seemed very justified to me.

However, to my surprise I read that 50 percent of these 176 women were employed, 15 percent full-time. How did they do it? Fifty-eight percent of these working women went on to explain how their work situation had had to change due to their symptoms; they were obviously having to make modifications and perhaps move from full-time to part-time work. The study concluded: "The majority of women with fibromyalgia have limitations in their ability to work. The results indicate that individual adjustments in the work situation need to be made and that women who have found a level matching their ability may continue to work find it satisfactory"

A follow-up study by the same researchers was carried out in 2002 and reached similar conclusions:"The ability to remain at work depends not only on limitations in work capacity, but also on the capacity of society to adjust work environments and work tasks. More individual solutions are needed to allow women with fibromyalgia to maintain work roles"

These two studies clearly indicate that employers need to be prepared to be flexible and to allow people with physical limitations to work within their own capacity finding individual solutions to the various problems they encounter. Of course, working with an employer is always going to be tricky to some degree: they want someone who can get the job done on time and may only be prepared to compromise on certain issues. However, employers are beginning to realize the value of workers with physical limitations (encouraged by the Disability Discrimination Act) and are becoming more open to providing solutions."

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Friday, September 16, 2005

Is it Lupus - The St Thomas' Hospital "Alternative Criteria"

Is it Lupus - The St Thomas' Hospital "Alternative Criteria": "Is it Lupus? - The St. Thomas' Hospital 'Alternative Criteria'"

1. Teenage "growing pains" yes
2. Teenage migraine yes
3. "Glandular Fever" prolonged periods off school due to putative "glandular fever" sore throats, fatigue - yes
4. Severe reaction to insect bites - yes
5. Recurrent miscarriages - no
6. Septrin (and sulphonomide) allergy ?
7. Agoraphobia - varying from panic attacks in shops to fear of motorway driving - yes
8. Finger Flexor Tendonitis - maybe
10. Family history of autoimmune diseases?
11. Dry Shirmer's test
12. Borderline C4 ?
13. Normal CRP with raised ESR - one of the most important diagnostic aids. It is 20 years since we reported the persistently low CRP (C-Reactive Protein) levels seen in SLE. CRP zero and ESR (Erythrocyte Sedimentation Rate) 100?
14. Lymphopenia - Cytopenias (a deficiency of some cellular element of the blood) are included in the ACR classification criteria. They are also in my diagnostic criteria. For the purposes of the "diagnostically difficult" case, I have focussed on lymphopenia. In the patient with very non-specific complaints and essentially unremarkable blood tests, a borderline or low lymphocyte count is often overlooked. Common in lupus (although obviously not in any way specific), it is certainly worth including among the minor criteria.

All of us can diagnose lupus in the presence of a butterfly rash, nephritis and alopecia. the challenge comes at the other end of the spectrum. The atypical case. The mild case. The differential between real disease versus no organic disease whatsoever.

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Arthritis Research Center Foundation, Inc. - NDB Patients' Page - Blog - News - Enroll

Arthritis Research Center Foundation, Inc. - NDB Patients' Page - Blog - News - Enroll: "The National Data Bank for Rheumatic Diseases (NDB) is conducting research into factors that lead to the development of fibromyalgia. We need the help of people with fibromyalgia in researching this important issue. "

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Consultants Special Interests - Region: NY. Keyword: fibromyalgia

Consultants Special Interests - Region: NY. Keyword: fibromyalgia: "fibromyalgiaConsultantSunderland (NHS)
Washington (Private)Rheumatology, Inflammatory joint disease, Raynaud's phenomenon, systemic sclerosis, fibromyalgia, soft tissue rheumatism
'ConsultantCastleford (NHS)
Leeds (Private)
Pontefract (NHS)
Wakefield (NHS)Rheumatology, Paediatric rheumatology, unexplained pain syndromes, work related upper limb pain, fibromyalgia"

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Fibromyalgia at STIFF(uk)

Fibromyalgia at STIFF(uk): "STIFF(uk) - Support through information for fibromyalgia sufferers, their families and friends - aims -

* to provide mutual support for sufferers and their families;

* to disseminate information about FMS to the medical profession, the general public and the media;

* to provide confidential group and individual help and advice.

STIFF(uk) is a small national UK based charity which provides information and support to sufferers of Fibromyalgia Syndrome. "

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Arthritis Research Campaign | Fibromyalgia

Arthritis Research Campaign | Fibromyalgia: "Sometimes tiredness (fatigue) can be the most severe aspect of fibromyalgia. There may be overall tiredness and lack of energy, or muscular fatigue and loss of stamina. Either way, it can be difficult to climb the stairs, do the household chores, go shopping or go to work. Becoming less fit makes matters worse. Waking in the morning feeling unrefreshed is common.

Less frequent but still troublesome symptoms include:

poor circulation tingling, numbness or swelling
of the hands and feet
headache, irritability or feeling low or weepy
forgetfulness or poor concentration
feeling an urgent need to pass water
irritable bowels (diarrhoea and abdominal pain).

Of course symptoms like these can have other causes, and your doctor can help decide whether any further tests or advice are needed. The severity of the symptoms and the effects of fibromyalgia can vary considerably, and this range of severity can cause problems in diagnosing the condition and lead to varying medical opinions. A particular feature of fibromyalgia is the need to have the symptoms recognised and to be taken seriously."

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NHS Direct Online

Welcome to NHS Direct Online: "Fibromyalgia is a complex chronic (long-term) condition. Around 9 out of 10 people affected are women. It can affect people of all ages but is more common in older people.

The condition name comes from the Latin word fibro; meaning fibrous tissues (tendons, ligaments), ‘my’ meaning muscles, and ‘algia’ meaning pain. It used to be known as fibrositis, which literally meant inflammation of the muscles and soft tissue but was renamed fibromyalgia in the 1980s because studies found there is no inflammation or nerve injury.

Full recovery is very uncommon and the likelihood of recurrence is high. The condition is not necessarily physically debilitating, and with good support and treatment it may not severely damage quality of life. Fibromyalgia does not reduce life span."

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Blood tests taken

Took the following to my GP yesterday after therapist suggested I go back to try to find out if there is any physiological cause for my continual fatigue, pain and malaise...awaiting results which is a result!

Possible causes chronic tiredness, joint & muscle pain…
Ruled out:
Diabetes
Anaemia
Infection
Possibilities
Fibromyalgia – is it worth following up this suggestion for more advice & whole syndrome approach – rule out other diagnoses, which can co-occur or mimic? Hughes syndrome, Lupus, - do get discrete rash across nose and cheeks and upper arms, Sjoergen’s Syndrome, antiphospholipid syndrome, Sub clinical deficiency of Vitamin D
Any other auto immune stuff that causes joint and muscle pain without obvious swelling?

NHS Direct suggest: Routine laboratory and x-ray testing may be conducted along with a complete medical history and physical examination to rule out those conditions with symptoms similar to fibromyalgia. These include chronic fatigue syndrome, lupus, under-active thyroid, multiple sclerosis, myositis, rheumatoid arthritis, and Sjogren's syndrome.

Your GP may refer you to a specialist in connective tissue disorders (a rheumatologist) to rule out arthritis and get more information.

History of allergies – penicillin & food intolerances – hot flushes most common soon after meals (next worst when asleep)…

Any tests available so I can further improve my diet? Already eat all home cooked, low carb Mediterranean type diet?…high fruit veg fish olive oil etc, 2 –3 cups tea a day other wise drink water

Meds
Every night
Mirtazapine 150mg antidepressant
Zirtek antihistamine

As needed
Co-codamol
Diclofenac
Migraleve
Mebeverine & loperamide – less often since dairy free

New - inhalers




History:

Dr B mentioned possible diagnosis of fibromyalgia April 04 – upper torso T- shirt of pain, tired, tired, tired, joint/ muscle pains, brain fog, memory problems – especially words, names, dates. …….advice…to exercise – whatever suits, minimal alcohol, keep a diary… explains history of joint pains, numbness, tingling, weakness etc? Still find even 30 mins exercise causes major fatigue for following day or 3

Also visual disturbance said to be classic migraine. ( Had frequent full 2-3 day migraines with vomiting, pain etc until given beta blockers during final exams at Uni 1990. Rare reoccurrence since of full type but frequent visual problems ~ past 4 years.


· Mirena coil – 4 years, side effects are wonderful for alleviating PMS & associated worsening of all aches & pains
· Chest infection after holiday in Greece October 2003/ again 04 & 05
· Polyp removed from bowel following ~2 years severe digestive problems.IBS & sickness & diarrhoea. Dairy problems became apparent, switch to soya & dairy free made huge difference.
· Re-occuring mild incontinence
· Major endogenous depression 1990(?) … hospital 6months. Curtailed postgraduate studies. Seemed to follow/ be triggered by something which made bottom of legs/ ankles swollen, red & itchy – Dr suggested a virus of some sort
· Allergic to penicillin


There's no specific treatment for chronic fatigue syndrome. In general, doctors aim to relieve symptoms by using a combination of treatments, which may include:

Lifestyle changes. Your doctor may encourage you to slow down and to avoid excessive physical and psychological stress. This may save your energy for essential activities at home or work and help you cut back on less important activities.
Gradual but steady exercise.

Treatment of psychiatric problems. Mood has lifted….
Treatment of existing pain. Acetaminophen (Tylenol, others) or nonsteroidal anti-inflammatory drugs (NSAIDs) such as aspirin and ibuprofen (Advil, Motrin, others) may be helpful to reduce pain and fever.
Treatment of allergy-like symptoms. Antihistamines.
Treatment of low blood pressure (hypotension). The drugs fludrocortisone (Florinef), atenolol (Tenormin), and midodrine (ProAmatine) may be useful for certain people with chronic fatigue syndrome.
Treatment for problems of the nervous system. Symptoms such as dizziness and extreme skin tenderness can sometimes be relieved by clonazepam (Klonopin). Your doctor may prescribe medications such as lorazepam (Ativan) and alprazolam (Xanax) to relieve symptoms of anxiety.

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UK Patient and Patients medical Information and case studies from Patients Talking

New web site for patients to keep diaries....

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Wednesday, September 14, 2005

Volunteer Centre Northallerton

Discussed pros cons of volunteering at counselling yesterday as a means to getting me out of house/rut/feeling useful etc etc also suggested I try again with Dr B re tiredness and any possible physiological cause...

Volunteer Centre Northallerton:
SUPPORT NEEDS: VOLUNTEERS DO’S AND DON’T’S

• Tell us about any health problems or support needs and how these affect you, such as lack of concentrations, tiredness, indecisiveness etc. This will give us the information we need to support you and we will be able to inform voluntary organisations of your needs.
• Ask us to be as flexible as possible about the hours you work.
• Ask if you can have a mentor who can give you support.
• Suggest that the organisation puts on some disability awareness training for staff and volunteers.
• Ask for any training that would raise your confidence.
• Ask for tasks you can manage without causing you too much stress or anxiety.

Finally please remember:

• Don’t take on too much too soon, gradually build up your voluntary work.
• Don’t bottle up concerns or questions you have, please feel able to talk to us.
• Don’t hide if you become unwell, let us know and we can give you the support and flexibility you need.
• Don’t just leave – let us know why. We may be able to make some changes which would enable you to continue your voluntary work or we can learn from the feedback you give us.

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Monday, September 12, 2005

ECT lasting effects

Last week my psychotherapist mentioned the possibility of my suffering lasting effects from the ECT.....I know my memory is not what is was before, at Durham friends used to jokingly/jealously accuse me of having a photographic memory...I was able to remember the book, its place in the library, the page and exact quote pertaining to the topic discussed for example. Amongst other problems I often cannot remember having read a book or seen a film until well into it. Words I wish to write emerge jumbled from the pen. Dates and names are very very problematic.

Response to UK mental health bill: "'Williams (1941) has shown that the E.E.G. may remain abnormal for many years after a head injury and has demonstrated a relationship between E.E.G. abnormalities and the severity of the injury, as judged by the length of post-traumatic amnesia.' ('Electro-Encephalographic Studies of Psychopathic Personalities,' Denis Hill and Donald Watterson, J. Neurol. and Psychiat., 5-6, 1942-3)"

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Thursday, September 08, 2005

Fibromialgia. Web de Alfred Blasi

Fibromialgia. Web de Alfred Blasi: "Fibromylagia is a recognised DISEASE by the WHO in 1992 and classified under the ICD-10 ( International Classification of Disease) with the code M-709.

Copenhagens definition of 1993 says: Fibromaylgia is a painful widespread condition not articulated, that concerns predominantly the muscular zones and presents an exagerated sensibility in multiple predefined points.

Fibromyalgia has been recognised since 1994 in the International Association for the study for pain (IASP) and is classified with the code x33 x8a.

Here are some of the tests that they should run which are very important and that are not normally done.

According to many specialists, 40% of the patients diagnosed as fibromylagia are actually another still not studied disease. Therefore the confirmation of the diagnosis is fundamental on the part of one or more Rheumatologists. There are many diseases that in the beginning can produce the same symptoms as Fibromyalgia e.g. (Sclerosis and Leukemia) there are other diseases and alterations which are with almost complete certainty not analised in fibromyalgic patients.

These are the names of the ailments:
Rheumatic Arthritis
Lupus Eritematosa Systemic
Sjoergen’s Syndrome
Subclinical deificiency of Vitamin D with Secondary Hyperparathyroidism
Miopathic Hypothryoid
Sindrome of Antifosfolipidos Antibodies
Antipolymers Antibodies
Arthrosis from bad ergonomic conditions at work or in their lives
Multiskeletal Contractions due to mental stress
Osteopenia for anovulaction or a deficit Luteinic phase
Miopathias from viral diseases(SFC) Syndrome of affectation neuromuscular
Miopathias Mitocondrial due to chemical substances
chronic fatigue due to Anemia or Iron deficiency
Osteoporosis
Rheumatic Polimialgia and temporary Athritis
Autoimmune Mellitus Diabetes
Adrenal diseases autoimmune
Esclerodermia
poisoning from heavy metals of any type e.g. Mercury etc etc and then on the other hand apparently all endocrinological diseases can affect and cause pain in the muscles."

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Biology of chronic fatigue gains focus

The Boston Globe: "By Judy Foreman | September 5, 2005

For years, many doctors and others dismissed people with Chronic Fatigue Syndrome as depressed, lazy, or just plain whiny.
Now, a slew of research -- more than 2,000 scientific papers by some counts -- is suggesting that chronic fatigue is not a psychiatric illness, but a nasty mix of immunological, neurological, and hormonal abnormalities.

Several types of brain scans, for instance, have found different patterns of blood flow to certain regions of the brain in patients with chronic fatigue, and other studies have shown that patients have difficulty in thinking and processing information, and are unable to do several mental tasks at once.

''There are objective brain abnormalities in many patients with CFS that are consistent with the symptoms patients describe,' said Dr. Anthony Komaroff, a chronic fatigue expert and editor-in-chief of Harvard's Health Publications, a division of Harvard Medical School.

Chronic fatigue, which has no known cure, is more than feeling tired all the time. Definitions vary, but the one the federal government uses says it is characterized by persistent, unexplained fatigue lasting at least six months, as well as four of the following: sore throat, tender lymph nodes, muscle pain, multi-joint pain, headaches, un-refreshing sleep, malaise after exercise, and impaired memory or concentration.

The syndrome -- which can come on after an acute infection, a head injury, a major life stress, or from no obvious triggers at all -- now affects 800,000 to 2.5 million Americans, most of them women, said Dr. William Reeves, chief of CFS research at the federal Centers for Disease Control and Prevention.

But the ailment is tricky to diagnose because its symptoms overlap with those of other conditions such as depression, Gulf War Syndrome and fibromyalgia. A federal study now underway is designed to measure the activity of thousands of genes in 190 people, some with CFS, some without, to find a distinctive genetic fingerprint for chronic fatigue.

The goal, said Reeves, is a blood test for chronic fatigue.

''This illness is a nightmare that is extraordinary," said Dr. David Bell, a specialist in Lyndonville, N.Y.

''If you're lucky, you get over CFS in a couple of years. If you're not, it stays with you for the rest of your life.""

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